A couple of weeks ago, my sister's son had a seizure; he is not quite four, so while it was scary, the doctor did a CAT scan and told Kami not to worry, it could be one of many different things and was probably not a serous thing. Then last week, my dad had his seizure and is still in the hospital. You all know about the issues at my house with Steve and his drinking. Seems like there has just been a lot going on for all of us for what seems like a really long time.
Yesterday, Kami got a phone call from Wyatt's doctor saying that there was some calcification in his brain, and that they needed to take him to Boise to a pediatric neurologist. So Kami and Tim and Wyatt headed there this morning; turns out that what Wyatt has is something called tubular sclerosis (Read here for info). Not much is known about it, apparently, or at least at first glance; I haven't had the time yet to do a real extensive search. One thing I found encouraging is that a lot of the time, there are no appreciable effects from this little-known disease. People live with it, and live well.
One concern, though, are the behavorial/phsychatric manifestations of this. See, Wyatt HAS most of these symptoms. He has been going to a speech therapist, he had to go to physical therapy in order to learn how to crawl, he reallyacts like a naughty kid; Not TERRBILE, by any means, but there are definitly some telling symptoms there as well. So it sounds as if this part of it-because he already has so many of the mental/behavorial problems assocaited with it-is far more serious than the rest, at least at this point.
Just like with my dad, we are all in "wait and see" mode. Wait 24 hours and talk to the doctor. Wait 24 hours and get some more inforamtion. Wait another 24 hours and decide what can be done. Wait and see, wait and see. I don't know what to do for Kami and Tim, other than pray. It is definitive that this is what he HAS, they just don't know what they can do. He has to go in tomorrow and see a pediatric cardiologist because they think he has a tumor near his heart, and then another specialist because of another on one of his kidneys. they will do tests, and we will all wait and see.
AS if you weren't all tired of sending good thoughts our way, right? But my sister, and Wyatt, and his dad, Tim, really need some positive, happy thoughts and prayers sent THEIR way now.
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Comments: 7
I spent some time reading about TS. Here is one comment that stood out to me: "It is important for you to keep notes on your child's behavior and on whether or not he or she reaches the developmental milestones, and bring them to the attention of your child's physicians. The earlier these behaviors are identified and special programs outlined for your child, the better."
I also noticed there is a support group and that would seem like a good thing to get any and all family members involved in. Learning from those that have gone through this would be huge.
My grand daughter is expected be born with problems. After birth and we know more the exact issues a support group would probably be a good place for us too.
My prayers and thoughts are with you all!
(((hugs)))
How is Dad dealing with it? Will he be of any help in getting her to accept this?
Having raised 2 special needs kids (one more so than the other) I know how hard it is. We are bracing for our grand daughters arrival and all that my go with it. Even knowing it is still easy to deny. The thought they must be wrong, how can they tell at this point, she will be ok etc. still go through my mind (and she will be "ok" just a different view of it like you said).
My last one was 7 1/2 weeks early and also didn't have any of those signs. While early birth can cause problems as we both know it sound like this one is more than that (my early baby was actually my easiest all through).
My thoughts and prayers are with her and I hope that she will begin to see it and can move on to starting to get him more help in dealing with all that will go with this condition.