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Sheila George
February 23rd, 2004, 01:30 PM
Hello everyone,

I need some suggestions. It seems that Shelby has started having seizures during the day. So far they have only happened at school. She had three last Tuesday and one this morning. I am getting a feeling from the school nurse that they do not want her at school if she is having seizures, however I have no idea if and when she might have one. She is on seizure medication for her night time seizures, but this is something new. I am working with the doctor to determine what we are going to do about this new issue, but what I need to know from all of you who have children with seizures is how does your school handle this situation? So far the episodes consist of her whole body trembling and then she collapses. The seizure today lasted for about 3 1/2 minutes and the nurse said she was on her hands and knees and rocking and her upper body was trembling when she got to the room. I asked the nurse what the policy was if she ever became unconcious and she said the would immediately call EMS and then call me. This all sounds appropriate to me, but I am not sure how I take her back to school and explain to them there is no way for me to know when she is going to have a seizure.

Thanks!!!

Laura Brodie
February 23rd, 2004, 06:38 PM
Hi Sheila,
Will has had several seizures at school until the meds got them under control. They would ring me to tell me what was happening and as they had had training on what to do and at what point to call an ambulance they were pretty cool about it-this was a main stream nursery
Now he is at special school the nurse does exactly the same phones to tell me and places him in the right position etc.This has only happened once at this new school so far because he would not take all his medicine on that day. :(
I like the fact they phone so I can make a decision about whether to go to school to see him or leave it if he is alright! usually I go! Here in Birmingham there is a strong inclusion policy where all children have the right to remain in school with these conditions! Hope this helps love Laura

Sharon Cochenour
February 23rd, 2004, 07:48 PM
Shelia
The nurse should understand that there is no way of knowing when a seizure is coming on, but that shouldn't be a reason to exclude her from school is she has a known seizure disorder. Perhaps you could get a note from your doctor saying it is okay for her to go and what to do if she has a seizure or becomes unconscious. Calling EMS and her parent does sound appropriate. Sorry I can't be more help but Andrew has laughing seizure and doesn't take meds for those.
Sharon

Rebecca
February 23rd, 2004, 08:03 PM
I am so sorry that you are having problem with your school!

Please keep in mind that every state is defferent on their education but the Federal Government is very specific.....

In Indiana, there is a district person that is over the special education program. They are there to keep everyone in line. In Indiana they can not deny any child an education no matter what the condition or diagnosis. The liason (sp) between the school and the parents are placed to take on the matters that you are concerned with.

Hunter (my youngest and does not have MPS) had a liason from the state when he was being placed in school because of his hearing. He is not deaf but has hearing problems because of the primature twin thing! :? I did not have the 1 on 1 with her as some people with more severe disorders have but if I ever had a problem, SHE WAS THERE!!!

Since I am in another state, I can not give you the exact information. I am sorry about that! :( But it is a federal law that protects the children and there are Federal programs that the schools have access to that will provide training and protection for you kids. The schools are required to provide that training to the staff.

A friend of mine has a legally blind young girl that lives two hours away from the nearest Kentucky blind school. Her local school had to provide her with special computers that allowed her to see the chalk board from her desk top. Not at the parents expense but at the schools. This is a Federal Protection program.

Now my whole point of this winded post is to tell you that every child has the right to an education in a public school. :)

And I will come to any state to fight for your kids rights to attend and be safe! Lets stick together!

Hope it helps!
Becca

Sheila George
February 23rd, 2004, 09:44 PM
Thanks everyone. I knew that they cannot deny her an education, but I wanted to have information about how other schools handle this issue to present to them. In the meantime I e-mailed the school principal and told him my concerns and the impression the school nurse left with me. He assured us that he wants Shelby to attend school and they will handle the seizures on a case by case basis.

We have an appointment with her neurologist next Thursday and I am going to ask him to write a letter as I believe Sharon described. to outline what they should do if she has a seizure, until that time the procedure the school nurse described will have to do. Sharon, I am curious why calling EMS and the parent does not seem approriate to you? What do you think they should do?

We also have an IEP meeting that was already scheduled next Tuesday so I am sure this issue will be discussed at length then, so any additional suggestions will be appreciated.

Thanks again everyone!!

Paulina Jump
February 24th, 2004, 08:49 AM
Oh Sheila how horrible. Hope Shelby is doing better. One thing i would look at is to see if anything triggered the seizures. With Andrew, loud noises and alot of people can trigger him. Paulina

Sharon Cochenour
February 24th, 2004, 12:29 PM
Shelia
Sorry if I was misunderstood, I said it sounded appropriate to call EMS and the parent.
Andrew has severe asthma and the doctor filled out what was called a action plan. It states if he has a certain symptom such as wheezing, this is what you do. If he has another symptom, this is what you do. Anyone can look at it and fiqure out what to do given the symptoms he is having. It even has to call EMS and listed the symptoms of distress.
It is part of his IEP plan because it effects his education. The school does call me with any concerns because Andrew is non-verbal. I also talk to his teacher and nurse frequently just to make sure he is doing okay.
Sharon

Sheila George
February 24th, 2004, 03:34 PM
Sorry Sharon, I read that a couple of times so I do not know how I miss read it, but I went back today and it says clear as a bell "does sound appropriate". I better get new glasses!!! :lol: Thank you for the description of the action plan from Andrew's doctor. That is along the lines of what I was going to ask the neurologist to write up. I am hoping an action plan will help alleviate some of the school nurse's distress about this situation.

I went up to school today for lunch and Shelby was doing good today. :)

ChrisMPS2
February 25th, 2004, 05:09 AM
One of the bad things about having a seizure away from people familiar with the seizures is how they react. When William had his first grand mal seizure Lou had him laying on his back and wanted to stick his finger in William's mouth thinking he was possibly swallowing his tongue and he was clearly biting his tongue a little on the side. I knew he should be on his side with is head cradled to keep it from banging and letting anything in his mouth drain out because I had just read an article on it in Courage Magazine. In fact now I grab something to wipe anything I see coming out of his mouth so he doesn't suck it back in and choke on it.

With some simple rules outlined by the Doctor and parent it should be less traumatic for the school people. The worst part of course is that with a grand mal seizure they can just drop to the floor and really hit their head. William also has thrown himself backward so violently he fell off the bed and hit his head during a seizure.

cole74
February 25th, 2004, 03:27 PM
Sheila, Guess I'm just echoing others advice, but just wanted to let you know that I work in the disability respite field in Australia. Firstly it is not unusual for all children with epilepsy to go through periods of uncontrolled seizures - some children's epilepsy always remains uncontrolled. Our organisation has an 'Epilepsy Information Form' available for carers on each child with epilepsy. This includes description of types of seizures, medication and action plan on what you want them to do to in event of seizure and emergency nos etc. For further information contact an Epilepsy Foundation in your area (as a foreigner I don't know what you have in your local area!). good luck! Nicole

Sheila George
February 25th, 2004, 09:50 PM
The school nurse sent home several forms today for the doctor to fill out and one of them is a Seizure Care Manament Plan, so obviously she has dealt with this before and the school has procedures in place for this, so I do not know what her problem was on Monday. Of course now she is wanting EVERYTHING and is claiming she does not have a list of Shelby's medications. I fill out a form at the beginning of the school year every year so I don't know what they do with all that paperwork I fill out. She wants her vision test, hearing test, and a Mobility Plan because she has seen the teachers occasionally push Shelby in a wheelchair. Oh well, I am glad she is getting involved now, I just think she is going over board. Maybe I am just tired and grumpy and irritated at having to get them information I hae already given them before. This is probably my punishment for complaining to the principal about her. :)

Raines Family
March 30th, 2004, 01:10 AM
Hi, Sheila
Sorry to hear that Shelby is having these seizers. We think Caylin has had a few small ones but really don't know what to look for. She can be sitting doing something then just all the sudden burst out laughing then stop and was wondering if this might be one or just a plain off the wall stair. We only have one neurologist here in town and I don't know if he is any good but we were told we didn't need to see one unless she is having them, but if we don't know then what do you do? Can anyone give us some tips. I also wanted to tell you that Caylin's school picture this year, her and Shelby almost look alike. I will try to get one and send it e-mail to you.

Marty

Sheila George
March 30th, 2004, 10:36 PM
Marty,

I have heard of children having "laughing" seizures but I do not think that they use any medication for them.

A neurologist would be the doctor to see if you are concerned about seizures. Even before Shelby started having seizures we took her to a neurologist to help with sleep issues and just because since Sanfilippo has so much neurological involvement I thought this would be the best specialist to follow her overall.

Laura Brodie
March 31st, 2004, 01:30 PM
Hi, Will has laughing seizure /mad behaviours linked to falling over a lot. He is on Epilim and this really help him! Love Laura