posting more

Dear Internet,

I've been neglecting you. You don't scream at me so therefore you go on the back burner. But I promise to update you more.

Or at least try to.

Right now, I've got pictures picked out to do Jack's 11 month letter but instead of writing that now I'm going to go to sleep and hope I make it to the bed before I pass out.

In the mean time, here is a picture of fun in the tub. Jonathan discovered that the numbers stick to the baby.

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.

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.

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.