nystagmus

My son age 7 has epilepsy, primary immune deficiency, arthritis asthma and addisons. In sept. he had viral menningitis (meningitis). During the time of infection he had many long term siezures. His siezures are and have been difficult to control. They originate on the right occipital lobe. Currently our doctors are trying to determine if his ptosis is myastinias gravis or something else. The ptosis is on the left side and is variable (worse when tired). Ice test was inconclusive but seemed to make it sone better and blood test level was 5.1. Siezure does siginificantly make the ptosis worse. Also he has developed nystagmus looking right wich is also variable (worse when tired) and he has a intermittient hearing loss on the left side. He can tell you immediatly when suddenly he cannot hear very well from that side. It lasts from a few min. to an hour and may occur several times a day. It was first detected in neuro office with hearing test, he said that it was siginificant loss, but later that day another hearing test said he was fine. My son also is having trouble with balance if standing or sitting and not moving. The question we keep asking our docs is what is causing this and what can we do? So far we have no clear path of treatment or diagnosis we would truly appreciate any comments you may have

Thanks!
Gary

[CCF Neuro[P] MD, RPS]

Dear Gary:

I am not sure what to make of what your telling me.  Do they not think that your son may have Bell's Palsy as a result of the viral infection?  The idea that your son has myasthenia gravis should be testable by looking at the level of acetyl choline receptor blocking, binding, and modulating antibodies. If your son cannot make antibodies then it would extremely doubtful that he has MG.  In addition, they should be able to tell by EMG if your son has MG.  Is the ptosis getting better, worse or staying the same?  When they did the MRI, did it show anything?  In relationship to the viral meningitis (what was the virus?) when did the ptosis occur.  When did the nystagmus arise?  Is it getting better or worse or staying the same.  Is your son's epilepsy under control?  

I think the best thing is to sit down with your pediatric neurologist and sort through all the issues.  It may be that there is a communication problem with what is causing what symptom in your son.

Sincerely,

CCF Neuro MD

[Leann Bessine email - [e-mail]]

My 10 yr old son has CN Nystagmus w/jerky eye movement.  I am trying to find out if there is any information on how the nystagmus impacts the mental thought process.  We are having a DIFFICULT time in school!

[Cammi Roth]

My brother and his wife had their third son in June this year, he was a whopping 9lbs. 2oz.  

When he was born his right eye was extremely lazy and faced inward towards his nose. Once my sister-in-law noticed this abnormality, she contact an eye doctor.  Since the discovery of the disfunctioning eye, he has been to Dr Grossnickel, an opthamologist from Warsaw, Indiana.

The Dr. said that his eye was able to see and they would wait to a month or two and see if it corrected itself.  Well, unfortunately the situation hightens.  Approximately, 3-4 weeks ago, she discovered his little eyes doing a side to side motion everytime you would talk to him or he would hear something close.  It was almost like he was trying to find what the commotion was.  This went on until she contacted the Dr again and told him of the situation and he said to bring him in.  

She took him back to the Dr on Tuesday, Oct 3 and he is now being referred to a Pediatric Opthamologist who specialized in eyes and is an affiliate of Riley Hospital in Indianapolis, In.  
He is scheduled to go there on Oct 17 for a consult.

The local Dr in Warsaw said he has "nystagmus".  This is very heart wrenching to know some of the effects and long term disfunctions related to this illness.  As an Aunt of 4 nephews and 1 niece, I'm not quite sure how to cope or even accept this situation.

I would like to say that first and foremost, I serve a Mighty God who is able to do anything we ask.  I truly believe that God will direct my brother and his wife through this situation, because the Bible states "It is only for a season".  

Are there are any medical rehabilitation exercises that may be ministered to curve this illness? If so, please advise.  They were also informed that it may be neurological also.  If this is so, how do you handle this with a baby.  Like I said earlier, he was born in June so he is only 4 months old.  If surgery is necessary what are the chances of complete recovery and total usage of his eyes?  

Please advise myself and reassure that this illness is correctable.  Looking forward to your response.

God Bless you,
Mrs. Cammi Roth
Columbia City, Indiana