Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Symptoms >> Seizures? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1367967981 Message started by PJP123 on 05/07/13 at 12:06:21

Title: Seizures?
Post by PJP123 on 05/07/13 at 12:06:21

An 11 year old girl on my daughter's soccer team had a seizure and fell off her chair, she was in a coma and came out. She had 2 more seizures and is in a coma. It's been 10 days.

No doctor knows what is wrong with her. It's not epilepsy or brain tumor. My mind immediately went to mastocytosis. Is it possible that all the docs at a prominent NYC hospital would know to check for this. I wanted to mention it to the mom in an e-mail but thought I would be thought of as a lunatic.
I have read of seizures with masto. Should I mention it?

Title: Re: Seizures?
Post by lynda51 on 05/08/13 at 20:50:24

This is really a hard question.

First of all I would like to say how sorry I am for this little girl, her family, and all those who witnessed this! You must be terribly worried.

I am no doctor and certainly have very little experience with seizures. All I can do is share a couple of things I went through. Before I was diagnosed with MCAD, I was taken by ambulance to the hospital where i spent three days. I have absolutely no memory of anything about those three days. I was sent to a neurolist and had an EEG done on my last day there. It came back abn
ormal! Some kind of seizure disorder was diagnosed and I was put on a drug called Keppra (a seizure drug) daily.

When I was diagnosed with MCAD, it was "implied" that it was most likely NOT a seizure i was experiencing
but it was mast cell degranulations. There are many mast cells in the brain. My PGD2 levels are high and I think I have read there is possibly some correlation between the two. Now whether it could cause a comma, I have bo clue. I just know that it can cause an altered state of conscienceness. (Sp???....sorry, its late.)

How can it hurt if they just drew blood and did a tryptase, a plasma PGD2 and a 24 hour n- methyl histamine level. Others on this forum may have more ideas.

If it were my daughter, I would appreciate all the suggestions and help I could possibly get.

I am sure they have ruled out many many things. A blood draw is really quite non-invasive. So why not???

We will keep her in our prayers. Keep us posted if you can. Have you googled masto and siezures or commas?? take care...hugs to you.

Title: Re: Seizures?
Post by PJP123 on 05/09/13 at 16:28:20

Thanks Linda,
Just got this off the internet "The many faces of systemic mastocytosis";
A wide spectrum of neuropsychiatric abnormalities including anxiety, depression, dementia with cerebral atrophy, Eaton-Lambert syndrome, seizure disorder, glioblastoma multiforme, and pituitary adenoma have been described in association with mastocytosis

I just wish I could say something without looking like the lunatic that I am. Wouldn't it be something to solve this medical mystery. I emailed the mom, but have not heard back, so I'm inclined to mind my own beeswax. They tried to bring her out of the drug induced coma yesterday and she started seizing again. They are going to try again tomorrow. Very strange and scary indeed. I let you know if it's masto related, when they finally figure it out.

Title: Re: Seizures?
Post by Lisa on 05/27/13 at 15:33:12

Although seizures have been seen with masto and that the one pediatric case of masto was found through the child's seizures, it's rather unlikely if the child hasn't any kind of history of skin lessions or allergic reactions to help back it. So, I'd say that she has some other kind of neurological situation which should be investigated first. But you could put the case into the mother's hand and let her show it to the doctors and see where it leads. It couldn't hurt.

Not everything is masto caused or provoked. Or at least this is the stand the doctors take with us until more research can tie those other things into our masto.

Lisa

Title: Re: Seizures?
Post by Anaphylaxing on 05/27/13 at 16:50:52

How horrible

Like you said I wouldnt think iit wouldn't be the most likely thing in seizures alone

At the same time adding a serum tryptase to already drawn bloods wouldn't be harmful. However brining it up to the medical team with no other signs apart from seizure might not make a great deal of sense to them presuming they are excluding all most common causes like infection, congenital abnormalities, metabolic disorders etc

If the family felt strongly they wanted it to be excluded, bringing it up with a compassionate doctor would hopefully be well received

Not that a negative tryptase would entirely exclude it....;)

But agree with Lisa, it would not be the most likely thing in an otherwise healthy person...

Title: Re: Seizures?
Post by PJP123 on 06/14/13 at 16:49:58

I was just with the little girl I was writing about. She woke up after 4 1/2 weeks of drug induced coma to stabilize seizures. Every test is normal except autoimmune marker came back positive. She has no brain damage and needs some physical therapy because of lying still for so many weeks.

I finally got a chance to speak with parents about mast cell activation and dysautonomia but as we all know this is over most people's heads. They did read my e-mail and asked the nurses to take a look. So I'm happy I at least put it out there in case it could have helped.