Neurology Community
Need Neuro help!
About This Community:

This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Need Neuro help!

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.
Related Discussions
5 Comments Post a Comment
Blank
Avatar_f_tn
Where to start.  Huntington
Blank
Avatar_f_tn
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.  
Blank
Avatar_f_tn
Thank you! We can use all the prayers we can get for Olivia, her father and her aunt and uncle! God Bless!
Blank
Avatar_n_tn
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.
Blank
672136_tn?1225842505
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.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Neurology Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
Top Neurology Answerers
338416_tn?1260996698
Blank
jensequitur
Fort Worth, TX
620923_tn?1405964489
Blank
selmaS
Allentown, PA
352007_tn?1372861481
Blank
LisaJF
1780921_tn?1384615710
Blank
flipper336
Chandler, AZ
1751596_tn?1406776760
Blank
kristy12
Berlin, Germany
10389859_tn?1409925468
Blank
Foggy2