Clinic update and yet another diagnosis!

Dylan's Pediatrician called me on Thursday night to check up on Dylan's weight. We were struggling with what to feed her to get her to put on some lbs. She couldn't really take much MORE food, so it was about upping the calories. A little half and half, a scoop of formula... I think we got a good mix going but I told him she would be on the scale at the Spina Bifida Clinic so he asked that I call him with her weight. She gained... a LOT! She is 26 5/8 inches and she weighs 14 lbs 4.5 oz! That's good right!? That means since she went to the Endocrinologist she gained over almost a pound and a half! Woohooo! Go girl! I could kind of tell in her cheekies that she was filling out and she was!

Get ready for information overload... this is our family journal just as much as a glimpse into our lifes, so I want to get it all down!

While I had her Ped on the phone I mentioned the EEG and he actually looked it up for me and said that they indeed found "lots of abnormal activity". This is good and bad, it sucks that it's happening, but honestly we knew that something was going on, so it's good that they found out more about it. He said that abnormal activity can actually hold back development so treating it might be something that's helpful for her. It was left at that, knowing that we would be following up with Neurology the following day.

Well... we did. An chalk this up to another diagnosis for mommy and the Interwebz! Through all of my personal research I found information on Infantile Spasms. Thanks to YouTube I could see exactly what these were and they really did look like what Dylan was having, although hers were not to the extreme of some of them.

The Neurologist explained that normal EEGs show the right and left sides of the brain working together, kind of in unison. Well, with Dylan this isn't true, they are both doing their own thing unless there is a spike of activity (which there were a lot of, this is abnormal too!) in which all the lines would jump. I think this should make her twice as smart right? I mean, seeing as how they are each doing their own thing this should make her a superb multi-tasker! There were a lot of abnormal spikes throughout the whole EEG with only a couple periods of no spikes for maybe 5 to 10 seconds each, most of the time these spikes were pretty frequent. So there we have it... a completely abnormal EEG, nothing normal about it.

He said typical Infantile Spasms, which as caused by the two sides of the brain not working together like Dylan's, cause kids to "jack knife", fold in half. But, as I think we all know, there is nothing typical about Dylan right?! So he said she has a form that's not the "classic" form of Infantile Spasms but yet it's in the same category. This... also good and bad, but I would like to think more good. With the "classic" version they typically develop the spasms before 9 months of age but they aren't sure that the age in which Dylan developed symptoms means a whole lot It's suspected that as synopsises are made as the child learns and develops, something happens and that's what causes these spasms. So, they don't know if she started later because that's where her (already abnormal) brain was developmentally or if it's a different form.

The other thing not making these the "classic" Infantile Spasms are that the classic ones are very degenerative. VERY... In fact, through my research I had heard this and it was probably the most scary part for us. The Neuro said the impacts on development often happen so quickly that a lot of damage has been done before he even gets a chance to see the kids. Much less treat them. This means that someone could have a perfectly "normal" (what's normal anyway?) child for several months and then all of a sudden you don't anymore, you have one with pretty significant retardation. Shocking! It becomes a 'which came first, the chicken or the egg', where some kids start out normal and digress, Dylan's brain didn't start in that great of a place. Well, Dylan has been making leaps and bounds FORWARD in her progress over the last couple of months so... good right? And not typical at all! But definitely something we need to watch for on going as this may change.

So what to do... what to do... Well, the doctor said that there are basically three levels of treatment with the first one being the less invasive. That would be Vitamin B6. Yup... a twice daily dose of vitamin B6, right over the counter. The next, Topamax. The third a treatment called ACTH which involved a daily shot for about 6 weeks.

Apparently enough children are helped with B6 that if the symptoms aren't too severe it's worth a trial so that's what we are doing. We are supposed to watch for symptoms for a week and then let him know if it keeps happening. The only problem with this is that we hadn't seen any for a several days(notice... prior tense... boo!), yet the EEG did pick up abnormal activity, so what if we don't see any? Good question... the Neuro prescribed another EEG after a week or so on this B6 therapy (scheduled for the 28th) and then we will go from there.

Here's a little more info on the ACTH. If it gets to that point, there are some definite downsides to treatment. I haven't researched it all, but the kids do swell like they are on steroids, they are more prone to infection, high blood pressure and there were a couple other things he mentioned that I forget. I am sure I will study up on if we get to that point, there are of course a lot of resouces on the Internet. The other downside is what the doctor called a philosophical one. The company that makes the treatment charges $100k for it. Yup... you read right! $100,000! The doctor said that there are ways to have insurance pay for it, to not be worried about the cost, it angered him more than anything I think! With typical Infantile Spasms it's often the first thing they do, because it has a good chance of "resetting the brain" and stopping them before the child digresses even further. So Dylan has better odds of getting approved through insurance than a child with any other type of Epilepsy that just may not respond to medications.

While Matthew was a little freaked out by a medication that can "reset the brain" our friend Jessica was rejoicing! Haha, after all, isn't it BETTER that they can do that? At least for Dylan's sake?

We are crossing our fingers for the B6 to work but we will see how things go. Keep the pickle in your thoughts and we will all cross our fingers together!

I hope that's it for this update it but I reserve the right to have some other spark of rememberence and come back to edit this entry! It was a lot to take in!

The other thing that we did yesterday is a Renal Ultrasound. The good new is that we saw the doctor right after the ultrasound and he said things look great with the water works! They will do this once a year to keep checking. With her small bladder Dylan runs a greater risk of reflux to her kidneys when and if she learns how to 'hold it'. So there's always a potential for things to develop later. I thought we would know more about the function by now but when asked, the doctor said that we never really know because the nerves don't develop properly in SB kids and we just monitor as it goes! Alrighty then... let's hope she has more control then I think she has mkay?!

The Orthopedic doctor said she is stiff in her legs and feet but there is nothing that they would do at this point. They used to go in and mess with the muscle and tendons but what happens is that it just creates scar tissue and the kids end up more stiff than ever. Lo and behold, our friend Steve had some crazy stuff like this done when he was younger and, along with some wicked cool scars, he has no flexibility. He's a walking example of just why they don't do it anymore! Th doc said that they can always brace the lower legs come walking time, but whether she's a walker or not will depend on her quads, there's nothing they can brace there! He was very impressed with her movement at this point and it hopeful that whether she walks or not won't be a concern! He also checked her spine which looked good.

We also saw the Occupational Therapist who was VERY impressed with what Dylan's been doing since the last time we saw her in January. She kept saying "This is amazing!" and "She is amazing!" Good right?! She gave us a few things to practice... one is clapping which should come before sitting but we've talked about how Dylan's not typical right? There's a few other things having to do with her hands we will work on too... Dylan's just too focused on being mobile to stop and do hand things so we might bust out the bumbo again!

The Dietitian said Dylan's still at 85% weight to length so I will still be adding a scoop if formula to the mix and we will go with half an half or whole milk until she's nice and chunky again. I will be watching for those free cans of formula pregnant people get... that stuff's pricey! We shipped all the twins' off to the Food Bank, I think it lasts forever, it would have probably still been good!

Dr. Kestle, Dylan's Neurosurgeon stopped in to look at her noggin. He said the ridge on her right temple looks more like a plate to him because the bone is at the same level on each side of the ridge. If the bones had slipped to make a ridge he would see it higher on one side. Not sure what this means as far as getting it fixed but the ridge seems to bother other people more than us, and definitely more than Dylan, so we are fine waiting. We meet with Plastic Surgery in November and Dr. Kestle said it's on is surgery day but to have Dr. Siddiqui pull him out of surgery so they can meet together to discuss. We love Dr. Kestle... he came out of surgery last time Dylan had an appointment too!

I think that's all we saw other than maybe a nurse or something so that should about cover Dylan's day. As for Duncan's... he went bowling at Fat Cats with his crazy Aunt Jill! I cay crazy because she had two 2 yr olds and a 4 yr old bowling! She's a brave woman! She said Duncan had a blast and he was even bowling! Rolling the ball and clapping when pins were knocked down! Adorable! Big time thanks for watching him all day Jill. Everyone in our family has been such lifesavers when it comes to these appointments that we have to go to! I never have to worry about if someone will watch him... it's just who! That's such a relief!

Last night Jessica and Steve came over and brought dinner and dessert for Matthew's birthday. Which reminds me... no, Matthew DIDN'T know my favorite cake! Wahoo! I haven't failed AS badly as a wife then right? He said coffee cake. (Which I definitely like, occasionally Bob will spring one on me when I have a busy or crappy week and I can't complain about that!) But for a birthday cake though? NOPE, FAIL! I told him "I bet my mom knows, in fact, I bet even JILL knows!" I text my mom "Mom, what's my favorite kind of cake, Matt thinks you won't know." I got a response "white on white, boo to Matt!" Booyah! Jill's response took it one step further, "white with white, butter cream frosting" Oh yea! Two for two! My mom asked the same question of me and I even knew her favorite cake! Ha!

Here's my little confession, I knew Jill would know because it's her favorite kind of cake too. We have frequently talked about our similar tastes (everything but for Fritos) so I cheated... but I think it still counts! Good thing he 'lives the blog' so he doesn't read it or I'd be busted!

Anyway... Jessica brought over another Nothing Bundt Cake, delicious carrot. It was a beauty!


And... before I move on to pictures... Jessica won another game last night... I am going to quit keeping track if she doesn't knock it off.


Oh yea! That's right! Look familiar people?? That, my friends, is a "vintage" Fisher Price crib toy! Circa 1974-1988. I remember my Aunt Jane had one. I got it off eBay because Dylan's new PT brought one over and Dylan LOVED it. (I am not so sure the PT will be happy about it though since hers won't be as effective now!) Both kids love it, it's only been a few days and I can say it's worth every penny! Duncan even likes it. They were both playing with it at the same time when I got up to get the camera but he left.


Just cuteness. Standing in the laundry basket, feeling tall...


Duncan's latest thing, he loves to talk on the phone. This we knew... but I do mean any phone.