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!!! 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

They certainly could be. Hearing histories like Kynzer's make me more and more convinced that my sz history is connected to my delivery, rather than the hydro. It amazes me how so many of you (or your kids) have endured so much more from hydro than I have, but there hasn't been any convincing sz activity. I could write my whole hydro history on a 3x5 card, and yet, I had my first sz as a baby. Knowing that I had a complicated delivery with high forceps says to me that the hydro may have always been there, but the szs were likely brought on by what Mom has called the "mangling" of my body out of the birth canal. (Sorry for the imagery. )

I apologize for getting so off-track, but yes, I would have thought seizure right away, particularly with the limb shaking. Also, any sounds at all? Does he moan? Any drooling? What happens if you ask him what he remembers of it? I had simple partial seizures for 25 years before we knew what they were. EEGs can lie, too. I actually don't put much faith in them. I have had completely normal 24-hour EEGs and had six grand mals in 2 years. I also have had abnormal readings and gone years without any grand mal activity, even though there was evidence--allegedly--of significant spiking during the strobe phase. I have never had a video EEG, but I think they, along with lengthy monitoring (24-48 hours), particularly in the face of known triggers, are the way to go to get the most accurate reading possible.

I wish I could help more. Please let us know how it goes with the neuro.


LIZARD

No..no noises at all. Except for sometimes during the night it sounds like he is sucking something...only there is nothing there...and then sometimes he will just cry out...but not really wake up that I know of...so I don't think it's nightmares?
The shaking though is when he is trying to do something...like he loves to start my car for me(with me standing there of course...then he gets in the backseat and in his carseat)but lately he can't quit shaking enough to get the keys in the ignition...but it's only with the right hand...and it's effecting his eating also...he's having a time with trying to feed himself. This just started like I said about 2 months ago....along with his right eye turning in.

Where are his shunts located? Could they have damaged something on the left side of his brain during one of his surgeries? Does his hand shake EVERY time he does something, or just sometimes? Since he seems to have several symptoms all on the same side, I would lean more towards damage esp. if his hand shakes everytime he concentrates it sounds like it is a more constant problem. Have you taken him in for an eye exam lately? Sorry, I am just throwing a bunch of questions at you! Megan's seizures have all been primarily on her right side (starts with her right foot, then right arm, then face/neck join in) and only a couple times her left foot has started it all. So, there is a possibility of seizure, but it sounds like damage to me... Good luck!

Well lets see...his shunt in on his right side also...so to damage his right side it would have to be on his left side right? and his other shunt is in his neck...posterior(sp)fossa something or nother shunt. Which is still a VP shunt. But the shakiness didn't start until about a month and a half after his last revision. Also he just got glasses for being near sighted....his eye doctor said it wasn't too bad...but he thought that was what was causing his eye to turn in...it just seems odd to me that is all happened at the same time and all on the right side. So thats 3 things...vomiting(stopped with zofran)right eye turning in and right hand shaking when he is concentrating on something...most times but not always.

Before the Zofran was he on any other anti-emetic drug. This is a far fetch, but Reglan is know to cause dystonia. You can go to wemove.org to read up more on dystonia.

Suzie

Well darn, sorry I wasn't any help.

But my Megs just boggled me again... We thought she had strep throat or something like that. Nope. Hand, Foot and Mouth disease. Got antibiotics, and now she is peeling. EEEEWWWW. But at least she is better.

If I think of anything else that might help, I will let you know.

Hi, sorry to hear this, sounds like a neuro Appt is just what you need, and maybe a 3 day EEG ask for a amblatory multi-day EEG so that they can check for seizures and... movement disorders, to me this sounds like a Essential Tremor,here is a site and there are many sites.
My son has 2 shunts too same basic reason and he has resting tremors also he has Ataxia Seizures and Dystonia, I think it maybe from all his revisions and 2 shunts, the Neuro thinks it could be gentic, it can get reaLLY COMPLACATED AND SOME meds cause these symptoms do your homework. I must go but have they checked his pressure in both areas of each shunts? this vomiting in the morn??? could it be under draining and causing pressure while laying down ( for my son this happen and sleeping proped up helped) I have to run I will check back later

http://72.14.253.104/search?q=cache:...s&ct=clnk&cd=6
Love and hugs
Deborah

Thanks so much for the help! I read both sights ya'll posted and so far the one that looks closest to what Kynzer does is essential tremors. We do like I said have an appointment for Oct. 3 with our neuro...so we will see what he has to say. Our NS doesn't seem too worried about it and says it's just clonus...which is might be...but where is it coming from all the sudden? And what can we do for it? He isn't even wanting to eat anymore because sometimes he has trouble with his hands shaking so bad. Well the right side and he is right handed. He is scheduled for SDR on Oct. 23....which should help tons with the spasticity...do you think this will help with his hand also?
One more thing...he can put his left hand under his elbow to steady the right hand and that usually helps.

Anita,
Silverware with thick or larger handles may help him with control while eating also play a left hand "game" see if he can make light of it and use his left hand.to eat, try the whole family to eat with their left hand it could be very funny.
Where it this coming from??? the ultimate question the brain is so complicated you may never know.
You said his 2nd shunt is placed in the posterior fossa area that is very close to the movement area of the brain, check that out too and make a check list of questions for the neuro also note when it is worse and what causes it. Austin came out of the 2nd revision with tremors all over they had taken out his 11 year old shunt and I feel and felt something was very wrong from that point on. Austin had a posterior fossa enlargement and it ended up being a cyst in his 3rd vent it got complicated so keep a calendar of conditions, and what why and how they happened, it will help. Essential Tremor in itself is not so bad, it is the why, with a child with so much going on that becomes so concerning. Has Kynzer had a MRI lately if not ask for one, it may tell you nothing but something’s are only seen on a MRI.
I wonder if a sling holding his right arm, if that may help him feed himself
Hugs Mom,
Love
Deborah