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

At least he has my eyes

And that's about it. Just look at them!


Jonathan when he was a baby.

Dear Jack,

For almost two years now my body has kept you going. From the time you were just a few cells right on into toddler-hood, you have been a little leach living on me, and I say that in an enduring way. Let me tell you kid, pregnancy was hard. Some people love it and I am not one of those people. But the moment I saw you, you were worth it.

Then came the breast feeding, which has had it's up's and down's. Honestly, I was more worried about the breast feeding then I was about giving birth. I knew that I was leaving with a baby, one way or the other. I didn't know how exactly I was going to feed that baby.

One thing that you will come to know about me as you get older, is that I'm stubborn. I'm sure that will frustrate you at time, as it does me too, but that stubbornness got us through the rough patches of breast feeding. First there was the pain. "They" say that is only lasts a few days. Well, "they" were wrong. For me it lasted at least 6 weeks. Every time you would latch on I would hold my breath and cringe. I'm sure some of that had to do with the fact that you were slightly tongue tied and therefore I was bleeding, but still, it hurt.

Next came the phase where you had some strange issue. You would eat for a minute, then scream bloody murder. It lasted a good 3 months and was so upsetting to both of us. I just wanted to be able to feed my hungry baby and you my little love, just wanted to eat. To this day I still don't know what the heck was going on but eventually you outgrew it.

Then all hell broke loose and you stared having seizures and were put on steroids. At that point you started nursing every 2 hours around the clock. It was worse than having a newborn. When you have a newborn you expect that to last 2-4 weeks. It's brutal and painful but you spend the majority of the time snuggled in bed with a brand new little human to love and stare at. Those 2.5 months were filled with terror and worry and were some of my hardest times as a parent so far. The lack of sleep only magnified those feelings but through it all the two of us had that time together and when I was nursing you, everything was okay.

After you were off the steroids came the task of my body having to adjust to less of a demand for milk. Over the next few months I had 2 rounds of mastitis and over 15 clogged ducts. I also pumped enough milk to donate over 300 oz to the milk bank for other babies. I became a pro at unclogging the pipes. During this phase I considered cutting you off. I was always in pain, always attached to a pump, and just worn down by everything. But it was flu season and you had been through enough already in your short little life so I kept at it.

I guess between 9 and 10 months of age I finally put you on a nursing schedule. You were getting wiggly when we were nursing, you often times seemed un-interested and I kept getting those dang clogged ducts. It was the only solution I could come up with. Thankfully it worked great. I never denied you boob time but I only encouraged it 3 times a day, in the morning when you woke up, before your afternoon nap, and when you were going down in the evening. This has been the golden phase of nursing. After about a month of this I was able to stop pumping, thank God, and my body adjusted. I haven't had a clogged duct since and you have been nursing wonderfully during those times.

If it were completely up to me, I would just leave things as they are for a while. When I first got pregnant my goal was to nurse to one year. I contemplated giving up a few times before that mark but was very glad that I didn't. Then when a year came and everything was going so well I figured we'd go to 18 months, if you wanted to. The benefits of the anti-bodies you get from breast milk make it worth it. That plus it's going well and being cheaper than buying milk made it sound like a good plan.

My number one goal in nursing you was to provide the best possible food and nutrition I could. Part of that is doing what we need to do to get the seizures to stop. With that, we are starting you on a special diet to try to control them. It has about a 30% chance of working wonders and we owe it to you to try. So with that, as of today, I am no longer breast feeding you. And it kills me to do this. We have been reducing the sessions quickly over the last few weeks and it hasn't been easy. I keep telling myself that this is what is best for you. That we have to try everything before we do surgery and this is simply a part of that. One constellation, if there is one, is that you can have some breast milk mixed with heavy whipping cream which you seam to love. That means that I have to pump, again and I have discovered that my pump is going out. Great.

Pumping isn't fun. It's time consuming and doesn't feel good, but you are worth it. And if for some reason this diet doesn't work out mama will still have milk. So, if at that point, my precious baby boy, you would like to nurse some, it's all yours. Most people would just stay weaned after going through it once and you may not go back to it, but I want you to then you can. Know that I will always do everything I can to keep you as healthy as possible. What you need is my number 1 priority and it always will be.

So I'm sorry that I'm taking the boob away and I'm really sorry that I won't nurse you when you're all hooked up to the EEG in the hospital next week but I will always give you hugs and kisses and I'll hold you as much as you want.

Love,
Mama

Apparently, we're the hippies

Jack is napping so I'm just going to hit "publish post" when he wakes up, we'll see how far I get.

We met with the nutritionist on Friday. It was okay, but you should have seen the look on her face when I told her that we don't give Jack artificial sweeteners, nor do we plan on giving them to him. I wanted to turn to Jonathan and say, "Do I have something on my face?" because I swear I spoke english to her.

They DO cause brain damage in rats. Yes, it's in large quantities and yes, they are rats but this is a child who already has brain damage and this diet it to deal with brain issues. Call me crazy, but it seems completely backwards to give him something that could cause more damage.

Jack has never had saccharin and while he's little at least, he never will. He has also never had high fructose corn syrup or hydrogenated oils. We call them death food around here and for over a year now we have all avoided them all together. He also doesn't get MSG and as little soy as possible, but I do know that soy has been in a few things. We read labels, all of them.

Jack will have to take vitamins because this diet is lacking in a lot of ways and she gave us a powder to try and give him. He's not a huge fan. She did say that we could give him Scooby Doo Vitamins instead but of course those have artificial sweeteners. I'm sure we looked at her like she had just told us to feed him cyanide tablets.

That being said she gave (AKA: is billing us for it later) something called KetoCal. It's a formula that kids on this diet are put on. There is this whole little recipe book using this formula. Oh yeah, and it's about $35 per container. Ouch. It's also for babies who aren't on solids yet. She gave us 2 cans, one is for the savory recipes and the other is for the sweet. The first ingredient on the sweet one is Hydrogenated Soybean Oil. WTF? Really, after we went on and on about not giving him all of this crap, she gives it to us anyways? I seriously wonder if she believed me when I told her that HE DOESN'T EAT CRAP. It's either that or she thinks that there is no way we can do this without the crap.

And on that note, I will admit that compared to other parents, I'm really crazy about what Jack eats. God forbid I want him to be healthy. God forbid I set him up right from the beginning and don't feed him all kinds of carbs and sweets that are addictive and that create picky eaters. Not only do they create picky eaters but it has been shown that if they don't eat sweets for the first 3 years, then they won't want them as they get older. This isn't just about feeding him right, it's about setting him up for the rest of his life. And look what being so picky has given me, I have a child who will eat just about anything I put in front of him, he likes chicken livers, vegetables, and salmon is his favorite food. Aside from this genetic disorder that is no one's fault, he is extremely healthy. He rarely gets sick and he is a very happy kid.


Now that you've read my ranting about food I guess I'll go on to discuss how the diet actually works. And with that sentence, Jack is up, guess you'll have to hear about that later. Or you can read about it here. Charlie's Foundation

New lay out

What do you think?

I know that I need to try and make the header a little bigger to fit across the top, but I'll work on that later.

It was just time for a change.

Things to do

I realize that list of things for me to do isn't exactly exciting, but it's helpful. We are starting the ketogenic diet when we go into the hospital on the 28th, both the docs agree that it needs to be tried, so that adds a whole lot more to do and organize before we go.

TS CLINIC RELATED
*Make list of questions for TS clinic.
*Done Get vaccine record.
*Laundry/Pack
*Travel food

HOSPITAL RELATED
*Figure out toys for the hospital.
*Buy a few new toys for the hospital?
*Partly Done Knit a hat to go over Jack's gauge helmet.
*Cook Jack's food for the hospital. (This isn't something I have to do but hospital food sucks and he's going to be on a super strict diet so I'd rather have yummy, organic, homemade food than frozen mushy hospital food.)
*Done Re-schedule his 2 appointments (ophthalmologist and pediatrician) that were scheduled the week we are in the hospital.
*Done Get another set or 2 of zippered pj's.

DIET RELATED
*Done Make list of question for the nutritionist.
*Partly Done Get supplies and containers for ketogenic diet.
*Get and read "the keto kid"

That's all the medical things I can think of right now. I'm sure I'll think of more as the week progresses.

bringin' him up right

Some of my favorite memories from my childhood are from spending time on Lake Travis. That being said, there is no doubt that my children will likely spend as much time as possible there too.

Right now the lake is full, the weather is hot but not too hot, and the water temp is perfect!

This was the look that he had on his face at first. He just had no idea what to think or what was going on.


But once he adjusted to the whole idea, he had a blast.


And loved watching the water.


Of course he wanted to be in the water. He wasn't a huge fan of the life jacket but did better with it than most babies do. It was difficult for us to hold him in the water as we were trying to float on cousins, but the swim platform was a big hit. The water would come up through it and he though that was great. He also though it was really funny that daddy was swimming.


While we were out we went to a floating restaurant and he really liked watching all the fish!


He had a little snooze on the way back to the marina. And napping on the boat is the best. And he slept really well last night.

Just an update

I have pictures I need to pull off my camera and a news letter to write, but I simply don't have the energy right now. So, you get this pathetic excuse of an update. But hey, at least it's a post.

So we saw the neurosurgeon on Tuesday, the genetic doc on Thursday, and we see our regular neuro on Monday. They all share the same office and nurses so we've seen them all a lot this past week. Not to mention the countless phone updates they get from us.

First, the surgeon. All things considered, it went well. We really liked the guy. He was very personable, spent plenty of time with us, and has even done some research in TS and just had a paper come out. Jack really liked him too. Although he prefers flirting with the nurses. We are being checked into the hospital on the 28th to do some tests to see if Jack is a surgical candidate. One of the nurses, Tiffany, got us in quickly. There is usually a 4 month wait but she saw we were coming in and she worked her magic for us.

Jack will be hooked up the an EEG for 3-5 days. And if that hell isn't bad enough they will also be doing a SPECT scan. We may also have to drive to Houston to get a MEG scan, but that would be later. The longest we've ever been hooked up is for 2 days, and that was before he was on the verge of walking.

We will figure out where to go from there. We might start the Ketogenic Diet then, which is a HUGE lifestyle change for all of us. Basically, no eating anything that isn't prepared in our kitchen. ANYTHING. Everything has to be measured out to the gram and it's so strict that he can't even have tylenol because of the sweeteners and there are only certain kinds of soaps and sunscreen he can use. It's bizarre. I don't know how breast feeding plays into it, that's one of my big questions. It's basically a no carb diet, meaning only meats and very few veggies. It's extremely challenging, but it has about a 30% success rate. Ideally he would be on the diet for about 2-3 years and then weaned off of it. The problem with Jack (and TS kids) is that the brain damage is still there so weaning the diet might cause the seizures to come back.

And Jack has a higher success rate to fully recover from surgery if we do it before he's 2. The surgery has about a 60-80% chance of stopping the seizures for good. But the risks... lets just say that they may have to put me under too while he's in surgery.

So, we are doing a med change. Again. We had 2 seizure free days this week, which was the most we've had in months. But then today he had 9. Each day seems to be a total crap shoot.

Jack remains the cutest, sweetest, most lovable baby ever. He is tall, now 33 inches and almost walking. Yesterday he took 4 steps. He gladly walks holding onto someone hands now, and I didn't think he would ever do that and he continues to love to push his pushing toys. He has also started signing! He knows the sign for "more" and uses it with gusto. It has cut down on the fussing for more food. We're working on other signs too, he just hasn't started doing them yet. And he loves it when people clap for him. It's super cute.

Ok, that's all for now. He is in bed and these days we don't know if he's going to be up at 5:30 or sleep until 8.