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Jon
@jontan

Posts: 3
Joined: Jun 04, 2016

NF1 and Epilepsy related

Posted by @jontan, Jun 4, 2016

My baby girl (now 7 months) has been diagnosed with epilepsy at the age of 5 months. She is currently on sodium vaporate and clomozapame. It seems to control her jerking seizure quite OK but at times we notice that she still has some form of complex partial seizures..
In addition to this, we strongly believe she has neurofibromtosis due to her cafe olio spots on her body and also I believe she inherited the spots from me.

Anyone can help with the above mentioned?

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REPLY

Welcome to Connect @jontan.
I’m tagging @irvkay312 @kevinkelley @sarahv to bring them into this conversation. Kay and Kevin have lived most of their lives with epilepsy and Sarah has a young son with epilepsy.

You may also be interested in this recent video by Nicholas Wetjen, M.D., a Mayo Clinic pediatric neurosurgeon, where he speaks about epilepsy and surgery. https://connect.mayoclinic.org/discussion/what-is-epilepsy-surgery/

@pkglitter has a grandchild with NF1 and @nfrunner work in NF advocacy. By tagging them on this conversation, I hope they will return to Connect to share experiences and information with you.

Jon, have you spoken to you daughter’s doctor about your suspicions of neurofibromatosis?

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.

@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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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

@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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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

Hi,

I have had epilepsy since birth, due to forceps use that caused pressure on
the brain and Grand Mal seizures. At this stage of life, your child is
growing as are her many systems. One thing I would try to do in the
confines of her home “is keep her away from items that can trigger
(initiate) seizures.” Things like noise, bright lights, excitement and
even stages of depression, by being alone and not feel the love of ones
family. One with epilepsy, will often fall into a conscious or sub
conscious state of depression; since the seizure instances show, tell and
give them the feeling of being different from others–since they don’t know
when such will strike again.”

I’d work closely with the Epileptologist or Neurologist regarding tests and
diagnosis, as well as medications that can “eat the Calcium of the
bone–such as Phentoin and Dilantin.

Good luck.

Kay

@jontan, I just found this article about NF1 and epilepsy from the Epilepsy Foundation http://www.epilepsy.com/learn/types-epilepsy-syndromes/neurocutaneous-syndromes/neurofibromatosis-type-1

What type of epilepsy does your daughter have?

@colleenyoung

@jontan, I just found this article about NF1 and epilepsy from the Epilepsy Foundation http://www.epilepsy.com/learn/types-epilepsy-syndromes/neurocutaneous-syndromes/neurofibromatosis-type-1

What type of epilepsy does your daughter have?

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started if with atonic seizures, with jerking of the arms (generalized).
At times now with the medication we still notice some forms of absence seizures and simple partial seizures…

I was told that to ensure her learning development is not affected, her seizures have to stop,,,,

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