whats going on with Kynzer???
 

Here is a little background info....Kynzer is 4 yrs. old that has a shunt because of being a preemie he had a grade III IVH...well actually he now has 2 shunts since his hydro isn't communicating...and he has spastic diplegic CP. He has had a really rough yr. with 8 shunt revisions....4 of which he didn't need....he just needed a second shunt. He did fine through all of his surgeries but about 2 months ago his right eye started turning in bad and his right arm/hand was really shaky...like an old person...you know how they jerk when they reach for something? His NS said it's not a shunt issue...we've done a couple of ct scans to make sure and 2 hospital stays....and we are waiting for his neurologist to get back in the country from Africa. He does have an appointment with his on Oct. 3. Also Kynzer has been vomiting in the mornings until his NS put him on zofran to the tune of one thousand dollars a month!!!:eek: :eek: Thank God for insurance!!! Now that has stopped...but he will still do it without the meds.
She also did a EEG and it said it was inconclusive to seizure activity...but something about spikes?
All of this just so I can hopefully get an answer to this question....could this be seizure related? If not what else would cause it??
Thanks!!
Anita

Hi!

Sorry I don't have any answers for you, wow, 8 revisions! I can't imagine! :( My daughter Caitlin has a VP shunt and had a grade 4 IVH (29wk preemie-now age 5). To me the vomiting seems strange-Caitlin always had bad bad vomiting when she had issues with her shunt. It is so scary when things go wrong with their shunts! I hope your doctors find the problem for you soon!!

Lisa O.

Lisa...the vomiting isn't like he does when he has a shunt malfunction...that is scary! This is more just like a cough and then vomit a couple of times then he's on his way...doesn't feel bad at all.
It'sjust strange.

Sorry for all your sweetie has been through.

My initial thought is that they are all separate issues. It isn't unusual to get strabismus at a later age if that's what is going on.

Also, is it possible he has predominantly right sided cp? If his right arm is affected, it is possible he has intention tremors associated with that or possibly some type of ataxia or movement disorder affecting it. It may or may not have to do with the surgeries causing some scar tissue to affect his movement.

It doesn't sound like seizures to me from the way you described it. Unless you meant his eye turned and his arm tremored at the same time for a minute or less each time and was never an issue in between episodes. Then it is possible though an unusual presentation. eyes usually act together and both go up or to one side with seizures though only one arm could be affected.

as for spikes on the EEG. There are many types that are considered normal but they often dislike spikes and waves together. However, a normal EEG or an abnormal EEG doesn't always clearly indicate what is going on with the child. You may or may not have seizures regardless of what it shows.

All the best, hope that helps. My knowledge is limited so don't go by it but it's my experience/ideas and that's what you asked for.

lucinda
mom to four boys...right hemi cp, seizures, asthma, GER, hydro (non shunted), etc.

A few ramblings... I have absolutely ZERO shunt experience. The last time Tom coughed / vomitted / seemed perfectly fine afterwards was when he had strep throat.

I don't like the sound of the shaky right arm and the right eye turning in. Somehow, since it's the same side of the body, it does seem "brain" related. And, I tend to think that if *you* have to ask the question, then it probably *is* seizure-related. But, I know of several occassions when others have posted other theories about the questionable behavior, and it's ended up not being seizure-related.

Many, many moons ago, Tom was cross-eyed. We patched for 1 1/2 years and finally found the right person to prescribe glasses. Thus ended the problem. And then, in February, we started going gluten-free. Not long after, I thought his eyes looked really good (straight) without his glasses on. And then, to my horror, his right eye started going OUT! Since then, we've gone without glasses for a bit, a new lens prescription for 2 months, then another new prescription, and we'll find out next month if we need yet a third prescription.

At his last eye appointment (beginning of August), she said he was growing and that was changing his vision.... taller, bigger head... bigger eyes. So... is he having a growth spurt? Have you made any dietary changes? (And, if you're interested, I recommend going dairy-free first, then remove the gluten later.;))

Just something to think about.