Advice re daughters illness
 

Hi All

My daughter who is now 7 has had anumber of health issues over past 4 years.

About 4 years ago she developed inflamation to her optic nerve in her left eye. This was diagnosed as autoimmune reaction with no underlying reason. Biopsy was unclear and as side affect of biopsy her left pupil blew thus impairing her eye sight. No diagnosis found for why above happened.

In July of 2012 she was diagnosed with type 1 diabetes. Healthy slim child with no family history of diabetes. Again another autoimmune type reaction.

Around same time she started falling up to 10 times per day with specific loss of control or muscle tone occuring spiradically in her right leg. Falls not diabetes related do not correspond with low sugars. She does not loose consciousness and is largely able to protect herself when she falls.

MRI of spine normal. MRI of brain largely normal except for small area of congenital abnormality in left frontal cotex not defitinitely near any movement area. This has been there from birth.

Developmentally as child she is perfectly normal and very bright and socially capable at school etc.

A few months back she had 1 focal seizure mild enough in nature. Neurologist have put on epilepsy drug as precaution(1 seizure not normally enough to define epilepsy) and also to see if falling is being caused by some form of epilepsy.

The falling has persisted. In general blood tests normal. Diabetes being well controlled. Mild positive for autoimmune markers but not conclusive.

My worry is that she has some form of autoimmune predispostion. Difficult to get cross functional medical people to talk.
Any know of any similar cases or suggestions re course of action to get tests for definitive diagnosis.

Is there some form of test genetic or otherwise to get ahead of any potential danger and get piece of mind.


Thanks

Tony
Worried that some other unknown organ will be attack

Hi Tony,
I just wanted to welcome you to the forums here.

I don't have any suggestions regarding tests I'm sorry, but I do hope that you find some answers for your daughter's difficulties. You mention the Neurologist, but I wonder if your daughter has been seen by a Rheumatologist.

Sorry to read your daughter is going through all of this, and you, too :hug:

All I know about testing in general, is that sometimes the only way to a concrete diagnosis, is through a differential diagnostic process, which means, everything must be ruled out.

One of the only genetic tests, out there, that I am aware of is Chrome X. And, I know, that if for any reason, a child needs an MRI, it requires sedation, and that may be something only given under certain suspected cases.

How many specialists have you seen? And why aren't they talking and explaining why these things are happening?

I've heard of children having epilepsy. I just haven't known anyone, in your set of circumstances, before. :hug:

hi Tony, I might have some suggestions to make to you re your daughter's condition. I myself have had a lifelong autoimmune disorder with neuro symptoms which I suffered undiagnosed all through childhood and only got a diagnosis about 8 years ago....I'm now 50 so it was a long haul. Perhaps you could reply to me....there are a couple of questions I would like to ask. M