So I'm just going to do a quick update on Jack here. There is more to tell, like about his yearly scans. And the fact that no one listens to parents. And ECI and how we now have a $500 bill for the evaluation that finally convinced them that HELLO, he's falling behind. Which I have been saying for 9 months now. But they don't listen to parents. Even parents with degrees in Early Childhood Education. But again, that is another story.
Jack had an EEG about a month ago. He didn't have any seizures while he was hooked up (it was a 24 hour EEG where we brought him home) but we figured the doc could still get some info from it.
When I spoke with him, he said that Jack is having a lot of discharges in his right frontal lobe, which is where the seizures are coming from. Discharges aren't actual seizures, they are small abnormalities in a localized area, whereas seizures affect the whole brain. The discharges are quick too and seizures last a lot longer.
Anyways, he says that the discharges being in one area is good and an improvement. Previously they have been is a few areas. Basically, he thinks that this means that Jack is a much stronger surgery candidate at this point.
We have to go to Houston on July 1st for a MEG scan (and come up with $1500 to get it done). The scan should tell us how deep within the brain tissue the seizures are coming from. If they are just on the surface that area can easily be removed, if it is from further down it is less likely they can remove it. And yes, we are back to talking about cutting out a part of my child's brain (which makes me want to vomit). But the doc is pretty sure that keto isn't going to be his miracle, even though it has helped tremendously. He is still having about 5 seizures a week and he is falling behind developmentally which means the seizures are taking their tole. We have to do what we can to get them stopped and this is the next (and last) option.
Please say prayers for him.
Showing posts with label seizures. Show all posts
Showing posts with label seizures. Show all posts
Saturday, June 11, 2011
Friday, February 4, 2011
22 months
Dear Jack,
A few days ago you turned 22 months old. And while I am always amazed at how quickly time passes I am painfully aware that your 2nd birthday is only 2 months away and that before long you will be a full fledged toddler. Holy crap!
We have had a lot of doctor's appointments this month, the most important being with the neurologist. Because you are still having some seizures, we are increasing your ratio on the diet which means more fat. How is that possible, one might ask. Well, it's been an adjustment. And around the same time you decided that you were going to fight about eating at every one of your meals. I can't even count the number of times that I've had to leave the room to calm down enough to come back and encourage you to eat. And I've even had to literally force-feed you a few time, which is awful. For both of us.
I spent about 8 hours of cooking over 2 days to re-stock the freezer and have a bit in there to pull from. Right after doing that you decided that you don't want ANY of those meals. You now refuse to eat eggs too, which used to be your all-time favorite and our go-to food if we couldn't get anything down you. For the most part you have been a very good eater, but the last few weeks have been challenging to say the least. You have also had a runny nose for the last 3 weeks so it's impossible to tell if the lack of interest in eating is because of the snot or the ratio change.
But that being said, I wouldn't trade it for anything. Ok, a cure, I'd trade it for that. Anyways, it has helped you so much and our lives are very normal most of the time. Sure it involves a lot of cooking and planning and thinking but it has given us such a reduction is seizures that we can go to playgroup, we can have a trip to the park without worrying that you're going to fall because of a seizure, and it had reduced the worry to the point that we can plan and do normal kid things. If we can get these last few ironed out, I would be the happiest mommy on the planet.
And I don't regret any of it for a second. I sometimes worry that people will look at our struggles and think that we somehow love you less, or wish you were different. Knowing what we could be dealing with, you are nothing short of a living, breathing, miracle. I haven't held back in sharing what we're going through because it might help others and because there is no point in hiding the challenges or pretending that we don't worry. But our love for you has never faltered baby boy. In fact, I think that it is because we love you so much that we worry and struggle sometimes. But because of you, I am a better person. Because of TSC I have so much more compassion then I ever did before. I certainly never knew how strong I was until you came along. The love of a mother is an amazingly strong force, even a little scary at times and I never knew I was capable of loving someone like that.
You are the sweetest child I know. You love to give hugs, blow kisses, say thank you, help put your dishes away after eating and sometimes you even help clean up your toys. You can light up a room and make anyone smile. You are the biggest flirt on the planet and always try your hardest to get the attention of any girl around. You always do something to melt my heart and even when I'm frustrated with your toddler ways, you are the cutest thing on the planet.
We have started taking swimming lessons again and are having a blast. There are only 2 other kids in the class and you are a rock star. You jump in and swim while holding your breath for 4 seconds without thinking it's a big deal at all. You start to sing the song before the instructor even does and you are a back float champion. They have never seen a little boy so comfortable and content to float on his back in the water like you do.
You saw snow yesterday for the 2nd time and you weren't too impressed. All you wanted to do was swing but your swing was filled with snow and when you shook your glove off to clean out the swing you cried because it was cold.
The other thing you are really into doing is dancing. Man, can you boogie. We don't watch TV often, but sometimes I put on Veggie Tales just to watch you do this to the opening music.
I love you my sweet monkey, more than you will ever know.
Mama
A few days ago you turned 22 months old. And while I am always amazed at how quickly time passes I am painfully aware that your 2nd birthday is only 2 months away and that before long you will be a full fledged toddler. Holy crap!
We have had a lot of doctor's appointments this month, the most important being with the neurologist. Because you are still having some seizures, we are increasing your ratio on the diet which means more fat. How is that possible, one might ask. Well, it's been an adjustment. And around the same time you decided that you were going to fight about eating at every one of your meals. I can't even count the number of times that I've had to leave the room to calm down enough to come back and encourage you to eat. And I've even had to literally force-feed you a few time, which is awful. For both of us.
I spent about 8 hours of cooking over 2 days to re-stock the freezer and have a bit in there to pull from. Right after doing that you decided that you don't want ANY of those meals. You now refuse to eat eggs too, which used to be your all-time favorite and our go-to food if we couldn't get anything down you. For the most part you have been a very good eater, but the last few weeks have been challenging to say the least. You have also had a runny nose for the last 3 weeks so it's impossible to tell if the lack of interest in eating is because of the snot or the ratio change.
But that being said, I wouldn't trade it for anything. Ok, a cure, I'd trade it for that. Anyways, it has helped you so much and our lives are very normal most of the time. Sure it involves a lot of cooking and planning and thinking but it has given us such a reduction is seizures that we can go to playgroup, we can have a trip to the park without worrying that you're going to fall because of a seizure, and it had reduced the worry to the point that we can plan and do normal kid things. If we can get these last few ironed out, I would be the happiest mommy on the planet.
And I don't regret any of it for a second. I sometimes worry that people will look at our struggles and think that we somehow love you less, or wish you were different. Knowing what we could be dealing with, you are nothing short of a living, breathing, miracle. I haven't held back in sharing what we're going through because it might help others and because there is no point in hiding the challenges or pretending that we don't worry. But our love for you has never faltered baby boy. In fact, I think that it is because we love you so much that we worry and struggle sometimes. But because of you, I am a better person. Because of TSC I have so much more compassion then I ever did before. I certainly never knew how strong I was until you came along. The love of a mother is an amazingly strong force, even a little scary at times and I never knew I was capable of loving someone like that.
You are the sweetest child I know. You love to give hugs, blow kisses, say thank you, help put your dishes away after eating and sometimes you even help clean up your toys. You can light up a room and make anyone smile. You are the biggest flirt on the planet and always try your hardest to get the attention of any girl around. You always do something to melt my heart and even when I'm frustrated with your toddler ways, you are the cutest thing on the planet.
We have started taking swimming lessons again and are having a blast. There are only 2 other kids in the class and you are a rock star. You jump in and swim while holding your breath for 4 seconds without thinking it's a big deal at all. You start to sing the song before the instructor even does and you are a back float champion. They have never seen a little boy so comfortable and content to float on his back in the water like you do.
You saw snow yesterday for the 2nd time and you weren't too impressed. All you wanted to do was swing but your swing was filled with snow and when you shook your glove off to clean out the swing you cried because it was cold.
The other thing you are really into doing is dancing. Man, can you boogie. We don't watch TV often, but sometimes I put on Veggie Tales just to watch you do this to the opening music.
I love you my sweet monkey, more than you will ever know.
Mama
Tuesday, January 18, 2011
An EEG in pictures
For those who have never been though a 24 hour EEG with a young child, it's impossible to even properly describe. Picture your worst nightmare, make it last 24 hours (or one week like our last EEG) and throw in a very cranky toddler.
The only things that have been more stressful are the seizures themselves and the lack of anything working to treat them.
I didn't take any pictures of hooking him up because it took both me and Jonathan holding him down to get it done. It sucks. I HATE the process almost as much as I hate seizures. When we do the 20 min one in the doctors office it is less stressful. The tech's over there are much calmer and more experienced plus they don't have to cement them to his head. The whole process just sucks and according to the tech's it will until he 4 or 5. God help us.
The only up-side of this EEG, and the reason I was able to take pictures, is because we actually got sent home with the monitor on! YAY! We got to be at home, out in the world, and most importantly, out of a tiny hospital room tethered to the wall.
When we left the hospital we headed to the mall because it was cold and wet outside. We rode the carousel a few times, and the train that runs in the mall. Jack LOVES the carousel, has a frequent rider card, and has been known to cry when we make him get off. He had a good time walking around and it wasn't to obvious that anything was going on. Either that or people were too scared to say anything.
When he was ready for a nap we headed to the car. The doctor actually wanted us to let him nap in the car so that we could get a seizure on the EEG. The problem was that the car wouldn't start. Long story short, the battery was dead and my mom's boyfriend, Ron, came and rescued me and Jack while Jonathan dealt with Sears and the battery. I suppose it would have been worse had Jack and I been on our own and I had no food for him, EEK! But it was sucky timing. I dropped Ron back off at his house and drove Jack around in his car. He had 1 seizure for sure and another episode that I suspect was a seizure.
That evening my mom came over to hang out with the little man. She also brought us dinner and wine! And our friend Rita came over too.
This is what his head looks like all bandaged up. The EEG leads are glued (AKA cemented) to his head and then wrapped. He pulled at it for a little while but eventually left it alone.
Then he had to wear the backpack, which he did really well. He has an ace bandage on his head here because at 3 AM we had to wake him up to re-wrap his head because everything but the leads came off. He didn't go back down until 5:30. Just add EEG tech to my list of mom duties. That's one that they didn't teach me in college.
I love this hat! And it was the best thing to put over everything they tape to his head. Dr. Kane ran into us one of the times we were at the hospital and he really liked it too :-)
And this is the way we all felt about the whole thing.
He did get bundled up to go on a car ride. And this hat and gloves set just cracks me up.
That night I had a pallet on the floor of his room. I "slept" with my glasses on and the monitor right in front of me so that every time he moved I could check and make sure he wasn't tangled, or pulling on his head, or having a seizure. I got maybe 3 hours of very interrupted sleep. Thankfully Jonathan took over early in the morning and let me sleep another 1.5 hours.
And he did a lot more car riding around the house too. You can kind of see the leads that are glued to his head in this picture.
24 hours later it was back to the hospital to get un-hooked. It's much easier and quicker than the hooking up process. Part of what sucks is waiting for 45 min each time, even though we're there on time. And as soon as he saw the tech again, he turned the other way and tried to get away. Thankfully he didn't fuss when we picked him up and took him, but I was concerned at his reaction.
We got back to the room and the tech took the box out and said, "I've never seen this code before on the screen. I'm not sure if it recorded." I stopped breathing. I was going to have a breakdown if it didn't record. She called another tech and found out that one of the batteries came lose, but that's why they put in 2 new batteries when they hook them up. Thankfully it did record and everything was fine. But Oh My God, don't do that to us.
This is what his head looks like under all of the bandages. I think there are 27 leads. Each one has to be measured, marked, and the cemented to his head so you can see why it takes a while. Then they all have to be tested to make sure they work.
The they just bathe his head is acatone mixed with baby oil and give him a scalp massage to get them off. And after he gave the tech a big hug, said thank you, and blew her kisses. He is the sweetest child ever.
As for the results, we won't know anything until Thursday when we see the neurologist. I know that he had 1 seizure. He also had what I've been wondering about while he slept in his crib, so I'm really glad that they'll be able to tell me if it is a seizure. He did not have one of the new seizures that he's been having and I'm just now beginning to wonder if he's having yet another kind a seizure. So he's now had infantile spasms, partial seizures, what I think are tonic seizures (or maybe tonic clonic, I'm not sure which) and now possibly complex partial seizures and/or myoclonic drops. That is far too many seizures for a child who's not even 2.
I'm not sure what's going to happen at the appointment. I suspect we may be sent to Houston for a scan thus sending us back down the surgery road. But I also think that his meds need to be reduced and maybe the diet tweaked a bit.
I'm not sure what is best for Jack at this point, but I do know that we have to do what we can to get the seizures to stop. I rarely have pity parties for us because I know that it's not going to help. And we really are the lucky ones. Jack is still the child who everyone looks at and thinks that he's completely normal, I'm just worried that if we don't get these seizures to stop, he won't remain that child. And while I do not pity him in any way, I still worry for him.
The only things that have been more stressful are the seizures themselves and the lack of anything working to treat them.
I didn't take any pictures of hooking him up because it took both me and Jonathan holding him down to get it done. It sucks. I HATE the process almost as much as I hate seizures. When we do the 20 min one in the doctors office it is less stressful. The tech's over there are much calmer and more experienced plus they don't have to cement them to his head. The whole process just sucks and according to the tech's it will until he 4 or 5. God help us.
The only up-side of this EEG, and the reason I was able to take pictures, is because we actually got sent home with the monitor on! YAY! We got to be at home, out in the world, and most importantly, out of a tiny hospital room tethered to the wall.
When we left the hospital we headed to the mall because it was cold and wet outside. We rode the carousel a few times, and the train that runs in the mall. Jack LOVES the carousel, has a frequent rider card, and has been known to cry when we make him get off. He had a good time walking around and it wasn't to obvious that anything was going on. Either that or people were too scared to say anything.
When he was ready for a nap we headed to the car. The doctor actually wanted us to let him nap in the car so that we could get a seizure on the EEG. The problem was that the car wouldn't start. Long story short, the battery was dead and my mom's boyfriend, Ron, came and rescued me and Jack while Jonathan dealt with Sears and the battery. I suppose it would have been worse had Jack and I been on our own and I had no food for him, EEK! But it was sucky timing. I dropped Ron back off at his house and drove Jack around in his car. He had 1 seizure for sure and another episode that I suspect was a seizure.
That evening my mom came over to hang out with the little man. She also brought us dinner and wine! And our friend Rita came over too.
This is what his head looks like all bandaged up. The EEG leads are glued (AKA cemented) to his head and then wrapped. He pulled at it for a little while but eventually left it alone.
Then he had to wear the backpack, which he did really well. He has an ace bandage on his head here because at 3 AM we had to wake him up to re-wrap his head because everything but the leads came off. He didn't go back down until 5:30. Just add EEG tech to my list of mom duties. That's one that they didn't teach me in college.
I love this hat! And it was the best thing to put over everything they tape to his head. Dr. Kane ran into us one of the times we were at the hospital and he really liked it too :-)
And this is the way we all felt about the whole thing.
He did get bundled up to go on a car ride. And this hat and gloves set just cracks me up.
That night I had a pallet on the floor of his room. I "slept" with my glasses on and the monitor right in front of me so that every time he moved I could check and make sure he wasn't tangled, or pulling on his head, or having a seizure. I got maybe 3 hours of very interrupted sleep. Thankfully Jonathan took over early in the morning and let me sleep another 1.5 hours.
And he did a lot more car riding around the house too. You can kind of see the leads that are glued to his head in this picture.
24 hours later it was back to the hospital to get un-hooked. It's much easier and quicker than the hooking up process. Part of what sucks is waiting for 45 min each time, even though we're there on time. And as soon as he saw the tech again, he turned the other way and tried to get away. Thankfully he didn't fuss when we picked him up and took him, but I was concerned at his reaction.
We got back to the room and the tech took the box out and said, "I've never seen this code before on the screen. I'm not sure if it recorded." I stopped breathing. I was going to have a breakdown if it didn't record. She called another tech and found out that one of the batteries came lose, but that's why they put in 2 new batteries when they hook them up. Thankfully it did record and everything was fine. But Oh My God, don't do that to us.
This is what his head looks like under all of the bandages. I think there are 27 leads. Each one has to be measured, marked, and the cemented to his head so you can see why it takes a while. Then they all have to be tested to make sure they work.
The they just bathe his head is acatone mixed with baby oil and give him a scalp massage to get them off. And after he gave the tech a big hug, said thank you, and blew her kisses. He is the sweetest child ever.
As for the results, we won't know anything until Thursday when we see the neurologist. I know that he had 1 seizure. He also had what I've been wondering about while he slept in his crib, so I'm really glad that they'll be able to tell me if it is a seizure. He did not have one of the new seizures that he's been having and I'm just now beginning to wonder if he's having yet another kind a seizure. So he's now had infantile spasms, partial seizures, what I think are tonic seizures (or maybe tonic clonic, I'm not sure which) and now possibly complex partial seizures and/or myoclonic drops. That is far too many seizures for a child who's not even 2.
I'm not sure what's going to happen at the appointment. I suspect we may be sent to Houston for a scan thus sending us back down the surgery road. But I also think that his meds need to be reduced and maybe the diet tweaked a bit.
I'm not sure what is best for Jack at this point, but I do know that we have to do what we can to get the seizures to stop. I rarely have pity parties for us because I know that it's not going to help. And we really are the lucky ones. Jack is still the child who everyone looks at and thinks that he's completely normal, I'm just worried that if we don't get these seizures to stop, he won't remain that child. And while I do not pity him in any way, I still worry for him.
Saturday, October 30, 2010
set back
Well, Jack had a few seizures.
I still haven't been able to pin down what from. I don't think that it could be from the dried fruit that someone gave him, but I have read that forbidden food can cause seizure up to 10 days after and the first one was only 2 days after. That story is a whole other post but I have never been so livid with another parent. The other thing that changed was his nap schedule. We finally dropped the morning nap and we were able to do things like story time at the library, and play dates. But we're going back to two naps for the time being. Drats! We've also started giving him his meds right before we put him down for bed so that it's closer to 12 hours between doses. That means we have to pin him down and use a syringe to get some of them in, which is no fun at all. We (Jonathan and I ONLY) were planning on going away for 2 nights for our anniversary in December but because of all of this, I'm re-thinking it. I don't think my mom could get the meds in him with the syringe. I wonder if we get all of it in him because as hard as we try, he still manages to spit a little out.
So here are the things we've changed:
Jonathan has been working a ton this week and I've been on the phone all week with the dietitian, the nurse, and our old dietitian trying to figure out what is causing these. I'm also officially done breast feeding so I think my hormones are all over the map, which really doesn't help.
I'm left wondering if this diet is going to be his miracle. We were two months away from starting to wean his meds and now the doc wants to increase them instead. (I'm supposed to check in with him on Monday and I want to ask questions before we do the increase.) I'm feeling like we are out of options, because if this doesn't work we are back to the surgery option which wasn't looking good to begin with. The chances of this being HIS cure is only 30% but after getting seizure free I was hanging my hat on him being in that 30%, now I'm not sure anymore. The good news is that I have heard stories of kids having break through seizures and then returning to no seizures for over a year. I suppose I was just hoping that for once my kid had caught a break.
I still haven't been able to pin down what from. I don't think that it could be from the dried fruit that someone gave him, but I have read that forbidden food can cause seizure up to 10 days after and the first one was only 2 days after. That story is a whole other post but I have never been so livid with another parent. The other thing that changed was his nap schedule. We finally dropped the morning nap and we were able to do things like story time at the library, and play dates. But we're going back to two naps for the time being. Drats! We've also started giving him his meds right before we put him down for bed so that it's closer to 12 hours between doses. That means we have to pin him down and use a syringe to get some of them in, which is no fun at all. We (Jonathan and I ONLY) were planning on going away for 2 nights for our anniversary in December but because of all of this, I'm re-thinking it. I don't think my mom could get the meds in him with the syringe. I wonder if we get all of it in him because as hard as we try, he still manages to spit a little out.
So here are the things we've changed:
- meds 12 hours apart (or very close to it)
- added 2nd nap back in
- cut out kool-aid
- NO sleeping in the car
Jonathan has been working a ton this week and I've been on the phone all week with the dietitian, the nurse, and our old dietitian trying to figure out what is causing these. I'm also officially done breast feeding so I think my hormones are all over the map, which really doesn't help.
I'm left wondering if this diet is going to be his miracle. We were two months away from starting to wean his meds and now the doc wants to increase them instead. (I'm supposed to check in with him on Monday and I want to ask questions before we do the increase.) I'm feeling like we are out of options, because if this doesn't work we are back to the surgery option which wasn't looking good to begin with. The chances of this being HIS cure is only 30% but after getting seizure free I was hanging my hat on him being in that 30%, now I'm not sure anymore. The good news is that I have heard stories of kids having break through seizures and then returning to no seizures for over a year. I suppose I was just hoping that for once my kid had caught a break.
Thursday, October 21, 2010
My new favorite number
Dear Jack,
So you are actually closer to 19 months now than 18 but I figured I would write you a letter anyways. And this is a special letter, because it's written on a special day. I feel like I want to climb on top of the roof and shout for all the world to hear that you have now been seizure free for two months. TWO WHOLE MONTHS! I've hesitated to say too much or to show my excitement because it could all change in an instant. I love looking at your seizure tracker and seeing a big fat Zero there every day. In fact, zero has become my new favorite number. And I'm starting to think that maybe, just maybe, we've found our miracle. We still have a long road ahead of us but when we hit the two year mark of you being seizure free, I think I really will climb on top of the roof to celebrate. Or maybe just take you to Disney.
The last 6 months have been exciting and challenging as you have successfully turned into a toddler. We wondered if you would ever walk as you waited just long enough to make me start to worry. But then you took off and now I have a hard time keeping up with you. In fact you like to move so much that running errands with you has become very difficult. The fact that you don't want to hold still coupled with the fact that I can't give you anything to eat in the shopping cart usually leaves me wanting to pull out my hair and buy some really good ear plugs. And we are at the grocery store several times a week because we always seem to need some kind of magic food for your diet.
You have also developed quite the vocabulary and are like a little parrot. The other evening we were driving home and got passed by a motorcycle that was going at least 100. Daddy yelled "idiot" really loudly and you promptly repeated it. It was very hard not to laugh. Thankfully, you haven't said it since and neither has daddy. You pick some funny words to say too, like purple and cracker. You don't eat crackers so I have no idea why you say it or what it means. You will also sit a the piano and play and sing, which is really stinkin' cute. I love it when you are in your crib in the mornings and you start singing the dada song. You make it up as you go along and it is clearly a song about dada. You could make up a song about mama on occasion too.
And speaking of your crib, lets talk about sleep for a moment. I really REALLY appreciate it when you sleep until at least 7. I can't complain about 6 because for months you woke up at 5 on the dot but on days when you sleep until 8 or 8:30, I feel like I've won the lottery. Because I'm up late preparing your meals, cooking, putting dishes away, weighing out things and trying to figure out how the heck to get the exact number of grams of egg in the bowl because eggs are so dang sticky that it's next to impossible to get the right amount. A little sleep-in is much appreciated.
So my big boy, and when I say big I mean the average size of a 2.5 year old, we are still keeping a close eye on you between the heart tumors and the seizures (or lack there of). I'm still nervous and stressed and this parenting thing has taken me on a whole new road that I didn't expect, but I couldn't have asked for a better kid to go on it with. You are amazing and sweet and funny. I love how you say "weeeee" when you go down a slide and how at story time at the library you have to hug every other mom there, you little flirt. You make me smile every day and because of you I am so thankful for all that we have and for every day that I get to be your mom.
Love,
mama
So you are actually closer to 19 months now than 18 but I figured I would write you a letter anyways. And this is a special letter, because it's written on a special day. I feel like I want to climb on top of the roof and shout for all the world to hear that you have now been seizure free for two months. TWO WHOLE MONTHS! I've hesitated to say too much or to show my excitement because it could all change in an instant. I love looking at your seizure tracker and seeing a big fat Zero there every day. In fact, zero has become my new favorite number. And I'm starting to think that maybe, just maybe, we've found our miracle. We still have a long road ahead of us but when we hit the two year mark of you being seizure free, I think I really will climb on top of the roof to celebrate. Or maybe just take you to Disney.
The last 6 months have been exciting and challenging as you have successfully turned into a toddler. We wondered if you would ever walk as you waited just long enough to make me start to worry. But then you took off and now I have a hard time keeping up with you. In fact you like to move so much that running errands with you has become very difficult. The fact that you don't want to hold still coupled with the fact that I can't give you anything to eat in the shopping cart usually leaves me wanting to pull out my hair and buy some really good ear plugs. And we are at the grocery store several times a week because we always seem to need some kind of magic food for your diet.
You have also developed quite the vocabulary and are like a little parrot. The other evening we were driving home and got passed by a motorcycle that was going at least 100. Daddy yelled "idiot" really loudly and you promptly repeated it. It was very hard not to laugh. Thankfully, you haven't said it since and neither has daddy. You pick some funny words to say too, like purple and cracker. You don't eat crackers so I have no idea why you say it or what it means. You will also sit a the piano and play and sing, which is really stinkin' cute. I love it when you are in your crib in the mornings and you start singing the dada song. You make it up as you go along and it is clearly a song about dada. You could make up a song about mama on occasion too.
And speaking of your crib, lets talk about sleep for a moment. I really REALLY appreciate it when you sleep until at least 7. I can't complain about 6 because for months you woke up at 5 on the dot but on days when you sleep until 8 or 8:30, I feel like I've won the lottery. Because I'm up late preparing your meals, cooking, putting dishes away, weighing out things and trying to figure out how the heck to get the exact number of grams of egg in the bowl because eggs are so dang sticky that it's next to impossible to get the right amount. A little sleep-in is much appreciated.
So my big boy, and when I say big I mean the average size of a 2.5 year old, we are still keeping a close eye on you between the heart tumors and the seizures (or lack there of). I'm still nervous and stressed and this parenting thing has taken me on a whole new road that I didn't expect, but I couldn't have asked for a better kid to go on it with. You are amazing and sweet and funny. I love how you say "weeeee" when you go down a slide and how at story time at the library you have to hug every other mom there, you little flirt. You make me smile every day and because of you I am so thankful for all that we have and for every day that I get to be your mom.
Love,
mama
Sunday, June 27, 2010
Into the hospital we go
We check in tomorrow morning at 7 AM. UUG.
I spent 4 hours cooking this afternoon but I think I finally have all of his food ready for the week. The good news about that is that I don't have to think about what to feed him, it's already ready.
He's done pretty well with the no nursing thing. He will still root around a bit and get upset when I don't give him any BUT he does accept it and will let me rock him. I'm very excited that he will let me rock him and snuggle him without nursing. I've been spending lots of time pumping, which sucks (pun intended) but Jack is worth it.
If you are the praying type, please pray that we get what we need from these tests, that he has enough seizure activity to actually do the tests, that they don't stick him too many times, and that we are out of there as quickly as possible. Don't pray for patience because we all know where that leads, just pray that it flies by.
This surgery evaluation and this diet are huge steps for us. And hopefully, one of them will be our saving grace and will stop his seizures.
Keto F&Q
I'm just going to post the email that I got that has the facts and questions. It's very informative and will hopefully give you a better idea of what we will be dealing with. Part of the diet is that Jack can't have anything touch his skin that has carbs in it because he could possible absorb them and it could cause him to have a seizure. So all of our products are being put in a box. All of his soaps, sun screens, shampoo, bubble bath, diaper wipes, diaper creams, and toothpaste are being replaced with things that are Keto friendly. He also can't take children's meds of any kind so no tylenol or motrin, we'll have to split an adult tablet and get that into him instead.
How the diet works is that it forces your body into starvation mode and makes you produce ketones. When the ketones are high enough about 30% of the time it stops seizures. Jack is starting on a 3:1 ration so that's 3 grams of fat for every one gram of carbs or protein. It's a bit brutal and cooking the meals made me loose my appetite. The doctors keep saying how hard it is on families to follow, and it will be. We have no idea what we'll be doing about Christmas and Thanksgiving. But it can't be any harder than watching my baby have seizures day after day after day.
Anyways, here they are.
Frequently Asked Questions....
Starting the diet is a little daunting. Hopefully some of these FAQ's will
help as you begin to prepare for initiation and/or face some of the issues
that come up with the diet. Some of this may not make sense to you at this
point, so it may be helpful to print out a copy for your files!
What products can we get to help the diet be more palatable?
Sweetners: Many parents use Stevia, a natural sweetener found in most
health food stores. Sweet 10 or Sugar Twim may also be used. Most families stay
away from nutrasweet (aspartame) since it can increase seizures in some children
Drinks: Getting the fluids in and providing an enjoyable drink during
the day is always important.
Koolaide...the flavors that do not contain any thing that may
affect the diet are Black Cherry and Lemon Lime. Buy the unsweetened packs and
use a keto friendly sweetner. Look for flavors without Maltodextrin if your child is sensitive.
Adding a little club soda will give it a fizz.
"Fruit Waters"... Glaceau Fruit Waters: they are available in natural foods type grocery stores
and even now in some more regular supermarkets
like some Safeways. Good flavors are watermelon, cranberry mint, honeydew, strawberry banana,
raspberry lime. Many parents use 'fruit waters' like the Sam's Choice "Clearly American."
Most of these do contain Aspartame...a seizure trigger for some kids. If you use them, or any of
the diet sodas, be sure to watch for any signs that the aspartame may be a trigger.
Some of the Œfruit waters‚ also contain sugars...be sure to read the label.
Bickford Flavorings...great carb free flavorings to help create tasty dishes...
They are non-alcoholic, contain no sugar and no salt. Hundreds of flavors are available
by calling (216)531-6006 with credit card orders.
Bickford Flavors 19007 St. Clair Ave., Cleveland, OH 44117
"sweetening ice cream, making popsicles, making "keto-drinks." So, far, I
use the strawberry, chocolate, vanilla and peanut butter to make ice cream.
I use the apple, with a little stevia, for "apple juice." They also have
colorings -- the beet red, annatto and brown are supposed to be the most
natural." DeEtte
What can we do about constipation?
Constipation is a common issue with our keto kids. These are some of the options parents on the list
are using:
Cal/Mag/Zinc II from Whole Life (1-800-748-5841). It doubles as the calcium supplement and constipation
remedy and is keto friendly.
Milk of Magnesia (original flavor) which can be purchased over the counter.
Mineral Oil is another option
Many times upping the amount of Magnesium will help.
Some have had success with Aloe Vera Juice
What do I do about a fever and pain????
Feverall acetominaphin suppositories...best for younger children given the way it‚s admninistered!
Can be purchases at most drug stores like Walgreen‚s, Eckerd‚s, or Osco‚s.
Adult Motrin...break tablet to get dosage right for older children.
Tempra Infant Drops
McNeil Brand Tylenol adult strength cut down to the appropriate dose.
How can I get keto friendly meds when my child is sick?
H-B Drugs. Full service compounding pharmacy specializing in
creating customized medications in order to most appropriately suit a patient's unique
needs with a special interest in pediatric epilepsy and the ketogenic diet.
1-888-383-2010 or 1-201-997-8488 FAX 1-201-9978488 located in N. Arlington, NJ
Ridge Road Pharmacy Ridge Road Pharmacy will compound any med in a keto friendly style.
They also compound keto friendly vitamin supplements. 1-800-Ridge Rx
For cold symptoms... Scott Tussin Original Clear Five Action Cold and Allergy Formula (sugar
free)
I called around and found it in stock at a pretty local pharmacy. It can
also be ordered, or you can get it shipped from some place in Rhode Island
1-800-638-7268
How can I figure a snack into my child‚s meals?
Though meals should be kept as equal and evenly spaced as possible,
many have found it helpful to add a snack during the day...either
to ease snack time at school, for an after school snack, or a pre bed time treat.
One method is to subtract the number of calories you want for the snack from the
total cals for the day and plan the snack using those calories. Use the remaining
calories split among the three meals.
A bedtime snack often helps keep the ketones up during the night, sometimes
helping to control night time or early morning seizures.
Where do I get a meal planner to plan meals at home?
One that's very easy to use and free is available for download at
http://www.ketogenic.org Just scroll down towards the bottom
How can I find nutritional information for foods I want to add to the meal planner?
The USDA site with info regarding nitritional info is at http://www.nal.usda.gov/fnic/cgi-bin/nut_search.pl
How the diet works is that it forces your body into starvation mode and makes you produce ketones. When the ketones are high enough about 30% of the time it stops seizures. Jack is starting on a 3:1 ration so that's 3 grams of fat for every one gram of carbs or protein. It's a bit brutal and cooking the meals made me loose my appetite. The doctors keep saying how hard it is on families to follow, and it will be. We have no idea what we'll be doing about Christmas and Thanksgiving. But it can't be any harder than watching my baby have seizures day after day after day.
Anyways, here they are.
Frequently Asked Questions....
Starting the diet is a little daunting. Hopefully some of these FAQ's will
help as you begin to prepare for initiation and/or face some of the issues
that come up with the diet. Some of this may not make sense to you at this
point, so it may be helpful to print out a copy for your files!
What products can we get to help the diet be more palatable?
Sweetners: Many parents use Stevia, a natural sweetener found in most
health food stores. Sweet 10 or Sugar Twim may also be used. Most families stay
away from nutrasweet (aspartame) since it can increase seizures in some children
Drinks: Getting the fluids in and providing an enjoyable drink during
the day is always important.
Koolaide...the flavors that do not contain any thing that may
affect the diet are Black Cherry and Lemon Lime. Buy the unsweetened packs and
use a keto friendly sweetner. Look for flavors without Maltodextrin if your child is sensitive.
Adding a little club soda will give it a fizz.
"Fruit Waters"... Glaceau Fruit Waters: they are available in natural foods type grocery stores
and even now in some more regular supermarkets
like some Safeways. Good flavors are watermelon, cranberry mint, honeydew, strawberry banana,
raspberry lime. Many parents use 'fruit waters' like the Sam's Choice "Clearly American."
Most of these do contain Aspartame...a seizure trigger for some kids. If you use them, or any of
the diet sodas, be sure to watch for any signs that the aspartame may be a trigger.
Some of the Œfruit waters‚ also contain sugars...be sure to read the label.
Bickford Flavorings...great carb free flavorings to help create tasty dishes...
They are non-alcoholic, contain no sugar and no salt. Hundreds of flavors are available
by calling (216)531-6006 with credit card orders.
Bickford Flavors 19007 St. Clair Ave., Cleveland, OH 44117
"sweetening ice cream, making popsicles, making "keto-drinks." So, far, I
use the strawberry, chocolate, vanilla and peanut butter to make ice cream.
I use the apple, with a little stevia, for "apple juice." They also have
colorings -- the beet red, annatto and brown are supposed to be the most
natural." DeEtte
What can we do about constipation?
Constipation is a common issue with our keto kids. These are some of the options parents on the list
are using:
Cal/Mag/Zinc II from Whole Life (1-800-748-5841). It doubles as the calcium supplement and constipation
remedy and is keto friendly.
Milk of Magnesia (original flavor) which can be purchased over the counter.
Mineral Oil is another option
Many times upping the amount of Magnesium will help.
Some have had success with Aloe Vera Juice
What do I do about a fever and pain????
Feverall acetominaphin suppositories...best for younger children given the way it‚s admninistered!
Can be purchases at most drug stores like Walgreen‚s, Eckerd‚s, or Osco‚s.
Adult Motrin...break tablet to get dosage right for older children.
Tempra Infant Drops
McNeil Brand Tylenol adult strength cut down to the appropriate dose.
How can I get keto friendly meds when my child is sick?
H-B Drugs. Full service compounding pharmacy specializing in
creating customized medications in order to most appropriately suit a patient's unique
needs with a special interest in pediatric epilepsy and the ketogenic diet.
1-888-383-2010 or 1-201-997-8488 FAX 1-201-9978488 located in N. Arlington, NJ
Ridge Road Pharmacy Ridge Road Pharmacy will compound any med in a keto friendly style.
They also compound keto friendly vitamin supplements. 1-800-Ridge Rx
For cold symptoms... Scott Tussin Original Clear Five Action Cold and Allergy Formula (sugar
free)
I called around and found it in stock at a pretty local pharmacy. It can
also be ordered, or you can get it shipped from some place in Rhode Island
1-800-638-7268
How can I figure a snack into my child‚s meals?
Though meals should be kept as equal and evenly spaced as possible,
many have found it helpful to add a snack during the day...either
to ease snack time at school, for an after school snack, or a pre bed time treat.
One method is to subtract the number of calories you want for the snack from the
total cals for the day and plan the snack using those calories. Use the remaining
calories split among the three meals.
A bedtime snack often helps keep the ketones up during the night, sometimes
helping to control night time or early morning seizures.
Where do I get a meal planner to plan meals at home?
One that's very easy to use and free is available for download at
http://www.ketogenic.org Just scroll down towards the bottom
How can I find nutritional information for foods I want to add to the meal planner?
The USDA site with info regarding nitritional info is at http://www.nal.usda.gov/fnic/cgi-bin/nut_search.pl
Sunday, April 4, 2010
A rough few days
Poor baby Jack. I'm up at midnight because I took a nap with him today and because I'm worried about him.
Yesterday and last night were awful, seizure wise. He had 9 seizures during the day and then 2 at night. Last night he went to bed at his normal time, about 7-ish but then woke up around 11. He didn't cry, so I left him in his crib but I did notice him pulling his hair. Around 11:30 he started to get a little upset so I went in and he didn't calm down or go back to sleep until 2. It was awful. Maybe the hair pulling was because his head hurt? I'm not sure.
Then I heard him at 3. He was doing this pathetic scream but with his eyes closed. That went on and off for about 10 minutes but he never sat up or even opened his eyes so I didn't go in. At 4 he was up again, screaming bloody murder and didn't calm down until 4:30. He had also had a diaper leak and I gave him some tylenol because something was hurting. He did the same thing from 6-6:30.
He is very good at putting himself to sleep. Something we really had to work at after the steroids. It took a long time but it was totally worth it. I've never let him just cry, but I also know his noises really well and if he's not distraught then I give him a few minutes to work things out. Given his medical condition I will NEVER just let him scream. He usually calms down really quickly, but last night was a different story.
This morning I called the neurologist on-call and was super glad it was our Dr. He told us to give Jack a one time boost of the seizure meds and then up the dosage again this evening. This basically maxes out his dose of the meds. The doctor is discouraged and thinks we are going to have to add another med which he doesn't really want to do but he doesn't think that the increase is going to make much of a difference. I do think that this med is keeping the spasms away, it's just not treating the partial seizures.
And then today he had 8 seizures. He cried most of the time we were at my mom's for Easter lunch. Jonathan and I actually ended up eating on the patio because Jack was content splashing in the puddles outside for a bit. We left early, gave him some motrin, and put him down for his nap. He was in a much better mood after the nap but still had a few seizures.
And days like these last few are extremely stressful. I just want my baby to be okay. I didn't sleep hardly at all last night and I'm up after midnight tonight because I just can't sleep. I desperately need sleep because God only knows what tomorrow is going to bring and I deal with all of this better if I'm rested.
And next weekend we are going to Dallas for a town hall meeting with some of the doctors from the TS clinic up there. I need to call and see about getting genetic testing done while we're there and also check to see if the hotel has cribs. Not that ya'll needed to know that, just that if it's written down maybe I won't forget.
Ok, back to trying to sleep. Thankfully all is quiet in Jack's room.
Yesterday and last night were awful, seizure wise. He had 9 seizures during the day and then 2 at night. Last night he went to bed at his normal time, about 7-ish but then woke up around 11. He didn't cry, so I left him in his crib but I did notice him pulling his hair. Around 11:30 he started to get a little upset so I went in and he didn't calm down or go back to sleep until 2. It was awful. Maybe the hair pulling was because his head hurt? I'm not sure.
Then I heard him at 3. He was doing this pathetic scream but with his eyes closed. That went on and off for about 10 minutes but he never sat up or even opened his eyes so I didn't go in. At 4 he was up again, screaming bloody murder and didn't calm down until 4:30. He had also had a diaper leak and I gave him some tylenol because something was hurting. He did the same thing from 6-6:30.
He is very good at putting himself to sleep. Something we really had to work at after the steroids. It took a long time but it was totally worth it. I've never let him just cry, but I also know his noises really well and if he's not distraught then I give him a few minutes to work things out. Given his medical condition I will NEVER just let him scream. He usually calms down really quickly, but last night was a different story.
This morning I called the neurologist on-call and was super glad it was our Dr. He told us to give Jack a one time boost of the seizure meds and then up the dosage again this evening. This basically maxes out his dose of the meds. The doctor is discouraged and thinks we are going to have to add another med which he doesn't really want to do but he doesn't think that the increase is going to make much of a difference. I do think that this med is keeping the spasms away, it's just not treating the partial seizures.
And then today he had 8 seizures. He cried most of the time we were at my mom's for Easter lunch. Jonathan and I actually ended up eating on the patio because Jack was content splashing in the puddles outside for a bit. We left early, gave him some motrin, and put him down for his nap. He was in a much better mood after the nap but still had a few seizures.
And days like these last few are extremely stressful. I just want my baby to be okay. I didn't sleep hardly at all last night and I'm up after midnight tonight because I just can't sleep. I desperately need sleep because God only knows what tomorrow is going to bring and I deal with all of this better if I'm rested.
And next weekend we are going to Dallas for a town hall meeting with some of the doctors from the TS clinic up there. I need to call and see about getting genetic testing done while we're there and also check to see if the hotel has cribs. Not that ya'll needed to know that, just that if it's written down maybe I won't forget.
Ok, back to trying to sleep. Thankfully all is quiet in Jack's room.
Friday, March 5, 2010
Tracking Evan - Video
This video is an add for an online seizure tracking system. However, the child has TSC and these parents describe exactly how Jonathan and I feel with all of this, they just put it much more eloquently. The video makes me cry because it hits so close to home.
Tuesday, February 23, 2010
a new diagnosis - Tuberous Sclerosis
I'm not really sure what to say about all of this and my head is spinning, I'm in shock and a bit confused because Jack screamed through most of our hour long visit with the doctor so it was hard to take in the information. He told us to email him with questions, so we're getting a list together, and we see him again in about 2 weeks.
Tuberous Sclerosis is a genetic disorder, you can read more about it if you click on the link. And this is another good article. I'm just going to hit the highlights of what I picked up from our appointment and leave it at that for the time being.
Jack will not grow out of the seizures. He will be dealing with them his whole life. He has some brain damage that is causing these.
There is a surgery option where they first do surgery to place EEG leads on the surface of his brain. Then he is hooked up to an EEG for a week so they can isolate exactly where the seizures are coming from. Currently the doctors suspects 2 places. Then they remove the damaged portion of the brain. It would be best if the surgery is done before the age of 2.
The current plan is to simply treat the seizures. The med he is on has reduced them so we're increasing it again and we'll add another one if we need to.
What we're seeing now are small partial seizures, the infantile spasms are gone, which means no ACTH, yay! And the doctor said had we not marked them on the EEG (every time we saw something we had to push a button) that he wouldn't have even seen them while just scrolling through. Jack even had one while we were in his office and he didn't really pick up on it but he totally believed me.
Epilepsy and seizures are only half of this genetic disorder, the other half is tumors. All tumors that come of this are benign but need removing so they don't cause other issues. People get tumors in the eyes, heart, brain, and kidneys.
Jack just had an MRI so we know his brain is clear of them. He went to the eye doctor recently so we know his eyes are clear. We have a scan of his kidneys tomorrow and I've got to set up an appointment with a cardiologist.
He will have to have these scans for the rest of his life. I think about yearly or if he's having any trouble.
The doctor said that a brain tumor is very likely at some point. Jack's heart is likely clear because usually those develop very early and get smaller as they grow so even if he does have one it most likely won't need surgery.
Those are the two medial things to deal with, seizures and tumors.
There is a research center in Dallas that specializes in this that we will likely be visiting at some point.
There is such a range of how this effects people. Some people don't know they have it until they are 30 and are living a totally normal life. Other people are mentally retarded because of it. Learning difficulties, autism, and a host of other things are all things that we could be dealing with down the road. For the time being, he remains a happy, funny, active little boy who's development is right on track.
Tuberous Sclerosis is a genetic disorder, you can read more about it if you click on the link. And this is another good article. I'm just going to hit the highlights of what I picked up from our appointment and leave it at that for the time being.
Jack will not grow out of the seizures. He will be dealing with them his whole life. He has some brain damage that is causing these.
There is a surgery option where they first do surgery to place EEG leads on the surface of his brain. Then he is hooked up to an EEG for a week so they can isolate exactly where the seizures are coming from. Currently the doctors suspects 2 places. Then they remove the damaged portion of the brain. It would be best if the surgery is done before the age of 2.
The current plan is to simply treat the seizures. The med he is on has reduced them so we're increasing it again and we'll add another one if we need to.
What we're seeing now are small partial seizures, the infantile spasms are gone, which means no ACTH, yay! And the doctor said had we not marked them on the EEG (every time we saw something we had to push a button) that he wouldn't have even seen them while just scrolling through. Jack even had one while we were in his office and he didn't really pick up on it but he totally believed me.
Epilepsy and seizures are only half of this genetic disorder, the other half is tumors. All tumors that come of this are benign but need removing so they don't cause other issues. People get tumors in the eyes, heart, brain, and kidneys.
Jack just had an MRI so we know his brain is clear of them. He went to the eye doctor recently so we know his eyes are clear. We have a scan of his kidneys tomorrow and I've got to set up an appointment with a cardiologist.
He will have to have these scans for the rest of his life. I think about yearly or if he's having any trouble.
The doctor said that a brain tumor is very likely at some point. Jack's heart is likely clear because usually those develop very early and get smaller as they grow so even if he does have one it most likely won't need surgery.
Those are the two medial things to deal with, seizures and tumors.
There is a research center in Dallas that specializes in this that we will likely be visiting at some point.
There is such a range of how this effects people. Some people don't know they have it until they are 30 and are living a totally normal life. Other people are mentally retarded because of it. Learning difficulties, autism, and a host of other things are all things that we could be dealing with down the road. For the time being, he remains a happy, funny, active little boy who's development is right on track.
Thursday, February 11, 2010
Jack's treatment plan
I want to post more than just medical updates, but this will be a medical update.
The whole game with all of this is Jack's development. He is so perfect that you would never know there is anything wrong. You would never know that he had 15 seizures today. If they don't stop then at some point his development will start to suffer too. We have got to get these things to stop.
About 3 weeks ago Jack started having little twitches. The doc told us to increase his meds. He's still having twitches. I got it on video and sent it to the neuro and he had us do another EEG, that was Monday. The EEG was normal but he didn't have any of these twitches or spells or spasms while he was hooked up. Here is a super cute video of him dancing while hooked up.
So today we saw the doctor. He said that he thinks the twitching is tiny spasms but without having it on an EEG there is no way to know for sure. Our first step is to increase his meds. We have room to triple his dose so we're going to start by doubling it. I have to call in next Monday and let them know how he's doing.
In the mean time he is also being scheduled for an MRI and a spinal tap. Yep, a spinal tap. They are looking for sugar in the spinal fluid meaning it's crossing the blood brain barrier. The doctor doesn't think this is likely but it has an easy fix. They will do the spinal tap right after the MRI while he's still out. They will also do some more blood work for some more genetic testing. All of this will probably happen in about 2 weeks. The nurse is setting it all up and then she's going to call me.
Hopefully it end there. Hopefully the increase in meds stop the spasms and that's it. If it doesn't then we go back into the hospital for a long EEG. We want to make absolutely sure of what we're seeing before proceeding because it gets really nasty, nastier than it already is. If we confirm that it is the spasms then we'll do a round of ACTH, the steroid that is in our fridge that requires a daily injection. There are a few things that are awful about it and why we haven't done it yet. First, because it's a steroid he will be super irritable and hungry all the time and he won't sleep. We went through that with the oral steroids but I understand that this is worse. Plus he will basically stop developing while he is on it, that's the part that really scares me. But he should pick right back up after he's off of them, he just may need a little early intervention. His blood pressure has to be watched really closely too.
Because we had "success" with the oral steroid it is likely the ACTH will do the trick. If it doesn't they will send us to Houston for a higher level MRI to look at a surgery option. Surgery on my baby's brain. That scares the shit out of me.
So if you're the praying type, please add Jack to your list. So far he's had no side effects to the med he's on now. It just needs to stop these things completely.
The whole game with all of this is Jack's development. He is so perfect that you would never know there is anything wrong. You would never know that he had 15 seizures today. If they don't stop then at some point his development will start to suffer too. We have got to get these things to stop.
About 3 weeks ago Jack started having little twitches. The doc told us to increase his meds. He's still having twitches. I got it on video and sent it to the neuro and he had us do another EEG, that was Monday. The EEG was normal but he didn't have any of these twitches or spells or spasms while he was hooked up. Here is a super cute video of him dancing while hooked up.
So today we saw the doctor. He said that he thinks the twitching is tiny spasms but without having it on an EEG there is no way to know for sure. Our first step is to increase his meds. We have room to triple his dose so we're going to start by doubling it. I have to call in next Monday and let them know how he's doing.
In the mean time he is also being scheduled for an MRI and a spinal tap. Yep, a spinal tap. They are looking for sugar in the spinal fluid meaning it's crossing the blood brain barrier. The doctor doesn't think this is likely but it has an easy fix. They will do the spinal tap right after the MRI while he's still out. They will also do some more blood work for some more genetic testing. All of this will probably happen in about 2 weeks. The nurse is setting it all up and then she's going to call me.
Hopefully it end there. Hopefully the increase in meds stop the spasms and that's it. If it doesn't then we go back into the hospital for a long EEG. We want to make absolutely sure of what we're seeing before proceeding because it gets really nasty, nastier than it already is. If we confirm that it is the spasms then we'll do a round of ACTH, the steroid that is in our fridge that requires a daily injection. There are a few things that are awful about it and why we haven't done it yet. First, because it's a steroid he will be super irritable and hungry all the time and he won't sleep. We went through that with the oral steroids but I understand that this is worse. Plus he will basically stop developing while he is on it, that's the part that really scares me. But he should pick right back up after he's off of them, he just may need a little early intervention. His blood pressure has to be watched really closely too.
Because we had "success" with the oral steroid it is likely the ACTH will do the trick. If it doesn't they will send us to Houston for a higher level MRI to look at a surgery option. Surgery on my baby's brain. That scares the shit out of me.
So if you're the praying type, please add Jack to your list. So far he's had no side effects to the med he's on now. It just needs to stop these things completely.
Monday, February 1, 2010
10 months old
Jack is now 10 months old as of yesterday. It's going by fast. Jonathan and I both think he should be about 6 months right now. But I do have to say that he is SO. MUCH. FUN. right now. He's hysterical, and he knows it.
He will crack himself up. He loves to dance. And baby dancing is just hysterical. He is starting to pull up on his toys and push them, which is frightening, and he's wonderfully ticklish. He's also beginning to feed himself some.
Teething has been a big issues over the last few weeks. We're actually going to the doctor this afternoon to make sure he doesn't have an ear infection because he's had a fever on and off for the last 6 days now. The poor baby has been miserable. All he's done all morning is scream.
I'm not sure if the stress of teething is causing more seizures or what. But he has been having some. They are tiny, hardly noticeable, and even when we're around other people I have to point them out, other people don't just notice them. So we increased his meds and I'm supposed to call the neruo on Wednesday and check in with him. Hopefully the teething and the seizures will be over with soon.
Oh yeah, and he bit me. As in I was nursing him early one morning and he chomped down. I yelped, he cried, it was bad. Thankfully he hasn't done it since but if that continues then the nursing will end way before either of us would like it to.
He will crack himself up. He loves to dance. And baby dancing is just hysterical. He is starting to pull up on his toys and push them, which is frightening, and he's wonderfully ticklish. He's also beginning to feed himself some.
Teething has been a big issues over the last few weeks. We're actually going to the doctor this afternoon to make sure he doesn't have an ear infection because he's had a fever on and off for the last 6 days now. The poor baby has been miserable. All he's done all morning is scream.
I'm not sure if the stress of teething is causing more seizures or what. But he has been having some. They are tiny, hardly noticeable, and even when we're around other people I have to point them out, other people don't just notice them. So we increased his meds and I'm supposed to call the neruo on Wednesday and check in with him. Hopefully the teething and the seizures will be over with soon.
Oh yeah, and he bit me. As in I was nursing him early one morning and he chomped down. I yelped, he cried, it was bad. Thankfully he hasn't done it since but if that continues then the nursing will end way before either of us would like it to.
Friday, January 1, 2010
9 month news letter
Dear Jack,
You are now 9 months old. You are at the perfect age, I love it. You are so much fun right now. It's hysterical how you crack yourself up. And no one, at least no one that we've met so far, can resist your cuteness. And it's hysterical to see the expression on your face if someone in a store doesn't talk to you, you look at me as if to ask what is wrong with them. It cracks me up.
The beginning of this month was rough because it started out with you having seizures again. Through the magic of the internet and the iphone we managed to get the information that the doctor needed to him while he was out of town and get you into see him super quick. He started you on a new medicine that has been wonderful for you. So far you aren't having any side effects and it stopped the seizures so quickly that we're able to keep you on a super low dose.
In the mean time you are developing perfectly, which keeps me from freaking out. Over the last 2 weeks daddy has been off of work for the holidays so we've gotten to have some great family time and he's gotten to see how quickly you learn and change.
All of a sudden you are pulling up and trying to move around. You are going to be walking soon, which freaks me out a little but in a good way. You have also proven to me that I only though that the house was baby proofed. The speed at which you move and can get into things is astounding. To say that you are a full-time job is an understatement. You're abilities are quite impressive.
To add to that you had your first language burst. On Christmas day you started whispering "da da da da da". Now, only a few days after that, you started yelling "da da da da" and I even heard a "ma ma ma" and a "ba ba ba" and a few other things that I can't quite identify. But you have been quite the little chatter box this week and your favorite sound is "da da da" which of course has your dad wrapped around your little finger.
We've been doing some basic sign language with you and you've stared to do a few signs too. You do the sign for milk and the sign for more, though they look nothing like the actual sign yet, but you're getting there.
And let me tell you, you can eat. You must have hit a growth spurt because the amount of food that you can put away is impressive. And I am so thankful that you will eat just about anything, especially if it comes from my plate. Keep doing that, it will make it much easier on all of us if you don't do that picky toddler thing.
I am so glad that you have finally decided to sleep a little later. Of course now that I say that you'll probably be up at your preferred time of 5:30. And let me tell you little one, at 5:30 it's still dark outside, very dark. But over the last 5 days I've been able to nurse you around 5-ish and then you go back to sleep until 7:30 or 8. How you've been sleeping these last few days is how you were sleeping before the seizures started and I can not express how relieved I am that you are back to that now. I still hear you every time that you move and I still turn the video on the monitor on to check on you several times a night, but I suspect I'll be doing that until I know that all of this is behind us. Until then, the extra sleep is appreciated and it's so good to see you rested and full of energy.
So baby boy, you continue to amaze me. You are sweet, and funny, and perfect. I can not believe how big you are, how amazing you are, and how in love I am with you.
yours always,
mama
You are now 9 months old. You are at the perfect age, I love it. You are so much fun right now. It's hysterical how you crack yourself up. And no one, at least no one that we've met so far, can resist your cuteness. And it's hysterical to see the expression on your face if someone in a store doesn't talk to you, you look at me as if to ask what is wrong with them. It cracks me up.
The beginning of this month was rough because it started out with you having seizures again. Through the magic of the internet and the iphone we managed to get the information that the doctor needed to him while he was out of town and get you into see him super quick. He started you on a new medicine that has been wonderful for you. So far you aren't having any side effects and it stopped the seizures so quickly that we're able to keep you on a super low dose.
In the mean time you are developing perfectly, which keeps me from freaking out. Over the last 2 weeks daddy has been off of work for the holidays so we've gotten to have some great family time and he's gotten to see how quickly you learn and change.
All of a sudden you are pulling up and trying to move around. You are going to be walking soon, which freaks me out a little but in a good way. You have also proven to me that I only though that the house was baby proofed. The speed at which you move and can get into things is astounding. To say that you are a full-time job is an understatement. You're abilities are quite impressive.
To add to that you had your first language burst. On Christmas day you started whispering "da da da da da". Now, only a few days after that, you started yelling "da da da da" and I even heard a "ma ma ma" and a "ba ba ba" and a few other things that I can't quite identify. But you have been quite the little chatter box this week and your favorite sound is "da da da" which of course has your dad wrapped around your little finger.
We've been doing some basic sign language with you and you've stared to do a few signs too. You do the sign for milk and the sign for more, though they look nothing like the actual sign yet, but you're getting there.
And let me tell you, you can eat. You must have hit a growth spurt because the amount of food that you can put away is impressive. And I am so thankful that you will eat just about anything, especially if it comes from my plate. Keep doing that, it will make it much easier on all of us if you don't do that picky toddler thing.
I am so glad that you have finally decided to sleep a little later. Of course now that I say that you'll probably be up at your preferred time of 5:30. And let me tell you little one, at 5:30 it's still dark outside, very dark. But over the last 5 days I've been able to nurse you around 5-ish and then you go back to sleep until 7:30 or 8. How you've been sleeping these last few days is how you were sleeping before the seizures started and I can not express how relieved I am that you are back to that now. I still hear you every time that you move and I still turn the video on the monitor on to check on you several times a night, but I suspect I'll be doing that until I know that all of this is behind us. Until then, the extra sleep is appreciated and it's so good to see you rested and full of energy.
So baby boy, you continue to amaze me. You are sweet, and funny, and perfect. I can not believe how big you are, how amazing you are, and how in love I am with you.
yours always,
mama
Sunday, November 22, 2009
Out of the Hospital
I have a lot to say about Jack and his recent trip to the hospital, but he's teething so I've gotten no sleep. None. At. All.
At our follow up visit with Dr. Kane, the neurologist, he wanted to do a longer EEG to make sure that the staring spells Jack has been having weren't seizures. He was so positive that it was nothing and that Jack was fine, but my mommy instincts were going off. I was really hopeful that they were just on over load from everything that has gone on so far. So the EEG was to catch one of these spells on the EEG and eliminate any problems.
We checked in on Monday morning at 7:00 to hook Jack up to the EEG. That. Was. Awful. It took everything in me not to cry with him. It took about 2 hours to get everything hooked up. They had to cement the electrodes to his head with glue and cold air, it was horrible. Almost as bad as the day I wasn't able to feed him all day. Not quite that bad, but close.
He was leashed. We could move around the room, but that was it. And it was a royal pain to keep up with those things. Jack was not a happy camper. The first 24 hours weren't fun, but the second 24 were awful. That's right, we were there hooked up to that think for 48 hours.
After the first day, after not seeing any staring spells, the doc had looked at the EEG and said that so far it looked perfect. The next day at noon-ish he came by, said that he was going to go scower the EEG and that we needed to talk about when we wanted to go home. We felt like we were damned if we did and damned if we didn't. We really wanted to catch one of these spells on the EEG but at the same time we had no idea when it would happen and Jack was so upset about being hooked up to that thing.
Dr. Kane came back about 2 hours later and said that he was really sorry but he was wrong and he found some abnormalities. They indicated that Jack is having partial seizures. The whole conversation is a blur. He said that Jack might grow out of this in a few year. Yeah, YEARS. Or it may be something he has for the rest of his life.
Let me go on a little tangent here and say that we all have our shit to deal with. Some people have weight issues, I've had pain issues and lived in constant pain for 2 years, and some people deal with mental health issues. We all have something to deal with, this is Jack's.
Anyways, after a sleepless night in the hospital where Jack was up every 45 minutes we got unhooked and bolted home. He was so happy to be at home and playing with his toys.
Saturday evening we finally got to talk to the doctor. He called after he went over the rest of the EEG. We didn't get a staring spell on the EEG but the spikes indicate that something isn't right. He recommended not medicating him and waiting it out a little. If it's going to get worse, it will be obvious and we'll call right away and get medicine started. However the doctor is hopeful that this will go away on its own. In the mean time we are treating him with acupuncture.
Knowing that there is something wrong with my baby's brain and that there isn't much I can do but wait for it to get worse is stressful to say the least. We're just praying that he doesn't come out of this with any brain damage and that this is all just a bad memory sooner rather than later.
He hasn't slept well all week. I haven't eaten dinner 3 nights because I'm just too tired. Hopefully the teething will end soon and we can all get some much needed rest.
Here is my little man all hooked up and taking it well... the first day.
At our follow up visit with Dr. Kane, the neurologist, he wanted to do a longer EEG to make sure that the staring spells Jack has been having weren't seizures. He was so positive that it was nothing and that Jack was fine, but my mommy instincts were going off. I was really hopeful that they were just on over load from everything that has gone on so far. So the EEG was to catch one of these spells on the EEG and eliminate any problems.
We checked in on Monday morning at 7:00 to hook Jack up to the EEG. That. Was. Awful. It took everything in me not to cry with him. It took about 2 hours to get everything hooked up. They had to cement the electrodes to his head with glue and cold air, it was horrible. Almost as bad as the day I wasn't able to feed him all day. Not quite that bad, but close.
He was leashed. We could move around the room, but that was it. And it was a royal pain to keep up with those things. Jack was not a happy camper. The first 24 hours weren't fun, but the second 24 were awful. That's right, we were there hooked up to that think for 48 hours.
After the first day, after not seeing any staring spells, the doc had looked at the EEG and said that so far it looked perfect. The next day at noon-ish he came by, said that he was going to go scower the EEG and that we needed to talk about when we wanted to go home. We felt like we were damned if we did and damned if we didn't. We really wanted to catch one of these spells on the EEG but at the same time we had no idea when it would happen and Jack was so upset about being hooked up to that thing.
Dr. Kane came back about 2 hours later and said that he was really sorry but he was wrong and he found some abnormalities. They indicated that Jack is having partial seizures. The whole conversation is a blur. He said that Jack might grow out of this in a few year. Yeah, YEARS. Or it may be something he has for the rest of his life.
Let me go on a little tangent here and say that we all have our shit to deal with. Some people have weight issues, I've had pain issues and lived in constant pain for 2 years, and some people deal with mental health issues. We all have something to deal with, this is Jack's.
Anyways, after a sleepless night in the hospital where Jack was up every 45 minutes we got unhooked and bolted home. He was so happy to be at home and playing with his toys.
Saturday evening we finally got to talk to the doctor. He called after he went over the rest of the EEG. We didn't get a staring spell on the EEG but the spikes indicate that something isn't right. He recommended not medicating him and waiting it out a little. If it's going to get worse, it will be obvious and we'll call right away and get medicine started. However the doctor is hopeful that this will go away on its own. In the mean time we are treating him with acupuncture.
Knowing that there is something wrong with my baby's brain and that there isn't much I can do but wait for it to get worse is stressful to say the least. We're just praying that he doesn't come out of this with any brain damage and that this is all just a bad memory sooner rather than later.
He hasn't slept well all week. I haven't eaten dinner 3 nights because I'm just too tired. Hopefully the teething will end soon and we can all get some much needed rest.
Here is my little man all hooked up and taking it well... the first day.
Tuesday, November 3, 2009
An update on Jack
Jack is completely off his meds! He's in a much better mood and it's so wonderful to finally have my happy baby back. He was sick last week, but still in a better mood than when he was on the meds.
He's still not sleeping great but some nights are better than others. Last night he was only up once but that one time he was up, he was up for an hour. We're waiting until this weekend to make sure all the meds are out of his little system before we do any kind of sleep training.
We see the neurologist next Wednesday and we're hoping for a clean bill of health. I'm wondering how likely it is that these things could re-occur. We have the crazy expensive meds in our refrigerator and we're hoping to have to find someone to donate them too (though I think we should try and find a UT football player to sell them to.)
Jack continues to develop perfectly and is crawling everywhere now. That started a little earlier than I had hoped, but better early than late. He loves to try and chew on shoes so we're having to do keep things a little more picked up around here. And I'm so tired of finding his toys in the back yard that the dogs have been banished to the kitchen during the day. And speaking of the kitchen, I still need to post before and after pictures of our floors. There's so much to do.
Anyways, back to Jack. He is so proud of himself for figuring out how to go from crawling to sitting. He can go, he can stop, he can sit, and he can drool. Oh the drool, or I suppose I should really say the spit. He blows raspberries all the time, and he really loves to do it as soon as I put food in his mouth. I now wear a robe when I feed the little booger. He's not a big fan of solids. I'm planning on getting a video of it soon to hold against him later in life.
Halloween was fun. We just went to a little festival in Shawn and Kelly's neighborhood but we got to see them and Grace. Grace was a cow girl so Jack was her cow. I have a ton of costume pictures though so I'll post those soon. They are all super cute.
He's still not sleeping great but some nights are better than others. Last night he was only up once but that one time he was up, he was up for an hour. We're waiting until this weekend to make sure all the meds are out of his little system before we do any kind of sleep training.
We see the neurologist next Wednesday and we're hoping for a clean bill of health. I'm wondering how likely it is that these things could re-occur. We have the crazy expensive meds in our refrigerator and we're hoping to have to find someone to donate them too (though I think we should try and find a UT football player to sell them to.)
Jack continues to develop perfectly and is crawling everywhere now. That started a little earlier than I had hoped, but better early than late. He loves to try and chew on shoes so we're having to do keep things a little more picked up around here. And I'm so tired of finding his toys in the back yard that the dogs have been banished to the kitchen during the day. And speaking of the kitchen, I still need to post before and after pictures of our floors. There's so much to do.
Anyways, back to Jack. He is so proud of himself for figuring out how to go from crawling to sitting. He can go, he can stop, he can sit, and he can drool. Oh the drool, or I suppose I should really say the spit. He blows raspberries all the time, and he really loves to do it as soon as I put food in his mouth. I now wear a robe when I feed the little booger. He's not a big fan of solids. I'm planning on getting a video of it soon to hold against him later in life.
Halloween was fun. We just went to a little festival in Shawn and Kelly's neighborhood but we got to see them and Grace. Grace was a cow girl so Jack was her cow. I have a ton of costume pictures though so I'll post those soon. They are all super cute.
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