My son beat cancer and now has abnormal eye movements and stretching problems

[danjenkins]

My 8 year old son had a Wilms' Tumor removed 4 years ago and is now cancer free. He is exhibiting abnormal eye movements and stretches uncontrollably and pauses in between words when speaking. He tells me his eyes start to move up so he has to move his head down to see properly. He opens his eyes real wide very often during the day. When he is sitting he stretches to the point of looking like a contortionist. He doesn't sit still. This occurs all day. One time recently, he began moving his hand and uttering a sort of babbling. He seemed dazed and unaware of us trying to get his attention. He doesn't remember doing this. In fact, he doesn't know he opens his eyes real wide. He doesn't recognize he's doing it. He knows when he stretches but says he can't help it. He describes the stretching as a tool to keep his grip from weakening. If he doesn't stretch it feels like his hands and feet are "dangling." He is very smart, outgoing and happy. I'm wondering if the Vincristine or any of the other AVD drugs used in his Chemotherapy have anything to do with his behavior. His speech is a full idea chopped up and put back together with words stopped in mid speak and finished a split second after. He reads very well. His math is very good. Headaches come to him with enough force to make him cry and put him to sleep. Very odd. He's getting checked out very soon. I just can't stand being in the dark for much longer. Any ideas on what may be happening to my son would be read with eager eyes.
-Dan

[Austinsmom]

Hi I do not know what is wrong but if I were you I would take him to his neurosurgeon (NS) and explain these symptoms and ask for a MRI or head CT to check out any problems, ask them to check for hydrocephalus, if it gets bad go to the ER where his neurosurgeon is working at or any large children’s hospital in your area with a peds NS. not to add to your worries but these symptoms are concerning and should be checked out
Well wishes and good luck
Deborah

[Mike Weins]

Hello and welcome to BrainTalk

I agree with Austinsmom.

[~Pansy~]

Hi Dan and welcome.

I agree with you getting your son to a pediatric neurologist or neurosurgeon.

Besides the problems with his eyes, speech and headaches, is there anything else? What about his general growth? Is he above average in height, head circumference, anything like that?

Best wishes,

[dahlek]

to a good, no, very good place. Most of us found this place as a source of info, refuge and at times, hope.

Right off, I've got to ask...What/when have you called the neruo about all these changes? Are you getting a response...if not, why not? These are legit questions to ask of office staff...Most docs always have another on call. Second, IF you are not getting answers, time to herd up copies of records, tests and x-rays & MRI's and go get a second opinion or two...Second opinions are really cheap in terms of peace of mind, even second 'seconds'. Do some easy homework by asking your GP, and even every other non-related doc you know the question: WHO would you see IF?... Doc's don't tell, but I'm betting they will only recommend the guys THEY know know their stuff and really work for the patients. THEN cruise thru the area hospital docs who are practicing in your areas of concern AND then check out the their web sites and NAMES in the web...lawsuits mite [tho not usually]are found on the state med board sites... Find out what research the docs have done in the past. Meaning if their area of interest intersects w/yours it's a maybe. Get the records, get opinions, and be braver than ever!
From me to you...HEAPS of hope! - j

as another cancer friend & I both comment: I shore wish there would be another, more positive/assertive word than SURVIVOR? I for one, would like something a heap more positive!

[The Dude]

God bless your son!!!!!!!

I hope he continues to improve (And beats this eye trouble)

Praise the lord!!!

The dude