Epilepsy and School **UPDATE**

[tinker girl]

Yes, and the bad ones he screams the whole time.

 

[forr2grls]

Do you keep a seizure diary? Do the seizures happen at a certain time of day,or after/during an activity?...I've gotten a few responses.And I've also been doing some research.How long has he had these seizures?Sounds a bit like infantile spasms,yes i know,he's a bit old to have them....Has he had a VEEG?Sorry for all the questions,just trying to help you get some answers.

Paula

 

[tinker girl]

Do you keep a seizure diary? Do the seizures happen at a certain time of day,or after/during an activity?...I've gotten a few responses.And I've also been doing some research.How long has he had these seizures?Sounds a bit like infantile spasms,yes i know,he's a bit old to have them....Has he had a VEEG?Sorry for all the questions,just trying to help you get some answers.

Paula

We did the diary for a bit also the diet and on and on. They are all over the place, am pm. He has had them for about three years now. He has had lots of eeg's they never find ne thing. We take him to CHOP in philly. He has stayed for weeks at a time and still nada??? NE help you can give is welcome.

 

[4fosterkids]

Hi
My son is now 14 and has had epilepsy since age 3. I have found the most useful thing to be communication between you and the teacher(s) and nurse. The more prepared they are the better things will be if or when something does happen.
One thing I have learned over the years is to be sure everybody who your child may be with, is trained in seizure first aid and/or meds administration. This means the lunch lady's, the librarian, sub teachers, bus drivers etc. It may not be the case so much in Kindergarten, but as they get older and out of the Kinder gates...things change. In my opinion...every teacher would benefit from an inservice about epilepsy because there are families out there that do not want to disclose their childs condition, so people are not ready.

We also do not want 911 called unless it is a prolonged seizure or we can't be reached. Everybody is Diastat trained and VNS trained for him too.

I think it is funny we all have the same cel phone fears! Either of not getting the call or forgetting our phone somewhere. Makes you wonder how we would do it before cel phones were around!!

good luck to you!

 

[forr2grls]

Well Tink,got a couple more guesses...tonic seizures, complex partial.Here is a web addy http://www.epilepsy.com/epilepsy/types_seizures.html

Paula

 

[tinker girl]

Thanks for the info. I can't tell you all how much it has helped me.

 

[tinker girl]

Well I have been up all night with ds. He took a bump to the nose and it went off from that point. Every 10 min,he is wiped out. Now what to do? He has had a double shot of meds and still nada. Any ideas??

 

[forr2grls]

Oh gosh Tink.So sorry.Have you called the Dr?I can't think of anything that might help,well maybe some tylenol or motrin..may be painful and pain can be a trigger.Please keep me updated.Hugs and prayers sent your way.


Paula

 

[onesadduck]

I'm sorry Tink, I have no advice for you sadly. I just wanted to say it sounds like your DS is in good hands at school. My late little sister had epilepsy among many other medical problems. She had many aides and teachers throughtout school. One time in third grade, her one-on-one aide, who had been with her for months, commented to my mom when she picked my sister up from school that my sister fell at school, and how "it was strange because she wet herself at the same time." My sister had actually broken her arm during that seizure (but due to other dissabilities, couldn't feel it luckily) and the aide never knew! Eventually they realized that whenever she "fell" her oxygen needed to be turned up, and she needed to be in a wheelchair for the rest of the day (they also had that no 911 for seizures under five minutes thing in her IEP- they never needed to call 911).

I hope they figure out what's going on with your DS, and find an effective treatment soon. Good luck,
Alisa

 

[forr2grls]

Got another response from the other place i posted-here it is:

Back arching is called Opisthotonus or Opisthotonos. I suffered this in 1997, a couple of years after I had head and spinal injury. I didn't know anything about medical terminology, I thought it was from hard work and getting older, so it took the quick onset of horrific symptoms - cramps, spasms, twitching, tics (these all hurt like crazy) in 2001, before I "accidently" found a name for this condition.
I suffered lock jaw a few times as well as facial grimaces and my legs would move involuntary in a paddling motion. My head rises up and to the right - I had many symptoms, which I later found to be neurological symptoms. One doc thought I might have had Epilepsy - my test was clear.
Doctors apparently think Opistotonus is a rare condition - but research has found it is displayed in many illnesses and conditions. I was by myself when it happened to me, I didn't know what was happening - I read where it can happen to babies soon after birth - I believe it could happen to babies, children and even adults, and no-one would know.
If you put Opisthotonus Opisthotonos (both spellings) in the Search engine, it will bring up sites with symptoms and other info. It may be scary but knowledge is power.
Does the boy's doc know of him having this back arching?



Paula

 

[minkydog]

Well,i'm glad your little buddy got to tour the school. It did my heart good to hear that you have already made contact with the school nurse(I'm a school nurse myself). You'd be surprised what those nurses deal with--everything from minor scrapes & loose teeth to seizures and anaphylactic reactions.

Having a plan in place will be your ticket to freedom. My DS12 has had seizures for the last 4-6 yrs. He mostly has them at night , but he has had a few in the pool and in the tub. He has never had one in school but I still worry about him. Just recently he went on a 12hr field trip to the N. Georgia mountains with his class--and I did not chaperone. A real step of faith for me. And he had a great time!

 

[tinker girl]

Hello to all! I want to start by telling all of you thanks! DS is doing well. The doc had to up his meds and a two days later he was back to being the little terror I know and love. We had his blood work re-done and all came back normal thank goodness! sorry I didn't get back to you all sooner I was with my mom for a bit I am now getting things back in order. talk soon.
--Tink!

 

[forr2grls]

Thanks for the update!Been worried.Hugs!

Paula

 

[MandM-Mom]

Glad everything is well!