Need Neuro help!

Question

My niece is 7yrs. old.  She has been diagnosed with ESES (Electrical Status Epilepticus Sleep Epilepsy) 3 yrs ago.  She is now almost 3-4 years in developmental delay.  She has no balance, her hands shake constantly she can't look up when she walks and it is hard to understand what she is saying at times.  Her father has late stages Huntington's Disease.  Although the docs tell us it is not HD, she walks just like him.  She was normally developing until about 4 years ago.  She has had some cluster seizures duing the day but mainly all her sleep studies show her sleep contains about 80% seizures.  She has a hearty appetite but is only 33 lbs.  her bones are sticking out.  Her hair started falling out from the depakote so the changed her meds again.  Can this all be related to the epilepsy?  Can all this be a food allergy also or worse, can it be Huntington's disease?  Help, we don't know what other kind of doctor to take her too.  We are lost.

michishair · Answer

I had Sydenham's Chorea as a child. They thought I had Huntington Disease. The symptom are the same with both. They tried everything with me and the only thing that worked and saved my life, was steroids.  

I know that Huntington's is hereditary. My prayers are for you and your family. I went through hell. I did not think that I was going to live. Both, are very rare diseases and soooo much same.

I know that I got mine from Strep as a kid, then rhumatic fever, then the Chorea came. They need to have these 2 disease right next to each other because they are so similiar.

Imluznit4 · Answer

Thank you! We can use all the prayers we can get for Olivia, her father and her aunt and uncle! God Bless!

Mel in OK · Answer

My comment is not informational.  I just wanted to tell you I have a friend who was diagnosed with Huntington's Disease around age 25.  I have watched her deteriorate over the past few years.  I will send a prayer up for you.  God Bless.

Imluznit4 · Answer

Thank you for your response.  I am so afraid that it is Juvenile Huntingtons because of the symptoms.  My sister is afraid to face that fact.  I told her as much as it hurts her to face she is hurting Olivia more by not having hee treated.
We watch her husband go downhill every day, he can barely walk and barely talk anymore.  He tries hard.  But now to add to it, his brother and sister were just diagnosed.  His mom died at 42.  And the story goes on... I appreciate all your comments.  It helps to know there are other ppl out there who suffer from this debilitating disease.

Idab · Answer

Where to start.  Huntington

Need Neuro help!

You are reading content posted in the Neurology Community