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Baby girl diagnosed with epilepsy, maybe also has neurofibromatosis?

Epilepsy & Seizures | Last Active: Jun 6, 2016 | Replies (7)

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@nfrunner

Hello, as a person with a form of NF, I agree that café au lait spots are considered the first and most common indication of NF. I think the criteria says 7 or more spots. Since you both have spots, that would be something to definitely talk and show to your doctor. NF can be inherited (50%) or spontaneous. I belong to a Facebook group called NF Mom's Rock and I recall posts about NF and epilepsy - others asking the same question as yours - is NF and epilepsy related?
I don't know the answer but genetics could help you with that, too. I understand and share the feeling that NF alone is enough. While they talked of their children with NF and epilepsy, I don't recall anyone citing any confirmed medical conclusion. I am glad to read that there is help for her seizures, little doll.

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Replies to "Hello, as a person with a form of NF, I agree that café au lait spots..."

Jon | @jontan | Jun 4, 2016

Thanks so much for the reply. Regards the nf1.
With regards to further tests we have carried out the following and obtained the following results: -

EGG - Sibclinical seizure
MRI - Negative
CT Scan - negative
Blood test - Negative
ECG - OK
X-RAY: OK
URINE - ok

Just these weeks, we have notice a few form of minor and subtle seizures.

Would like to seek advice on the following: -

1) was told that if stay seizure free for 2 years, she van slowly tail off her medication. How as parents can we help her grow our off seizure

2) will she grow out of it?

3) as nf1 is a progressive disorder, is this linked with her epilepsy?

Thanks

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Kay | @irvkay312 | Jun 5, 2016

Unfortunately, I disagree. I've had Tuberous Sclerosis since the age of 13 (and am now 77). It comes in many forms and is still not fully understood. One way to note my doctors tests in past years was not Ash Leaf spots, or even Shagreen patches, but rather "the small tuberous growths that became prominate at/on my finger nails and toe nails." Those tubers always returned after their removal which first subjected my diagnosis "to Woods lamp), from that point we knew what was. Withe the progression of time and growth, ridges became evident on my finger nails and toe nails. These would often be the spots that the tubers would grow into. When they'ed get hit, they would also bleed. As noted above and as outright off base as it sounds, "in my younger years I purchased a small woodburnig tool." Adenoma Sabacum, normally seen on ones face and nose, "I literally burned off and cauterized one by one." Those growths came back, which told me it was Tuberous Sclerosis. My concern per my epilepsy, has been to control the electrical impulses of the brain, thereby keeping the electrical elements from getting out of control, or hitting a suseptable area of my brain. My epilepsy did not begin "as a part of Tuberous Sclerosis, but due to a brain injury caused by the use of forceps during my delivery--causing pressure on the brain and its trail during my life." Sincerely, Kay

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