Re: POSSIBLE SEIZURE ALERT

[Guest guest]

Lori

I am so sorry to hear about your son's seizures - however I can relate to

how frightened you must be - my friends little boy who has just turned 4

started having seizures for no particular reason - the first started in

November - they have done MRI's EEG's stc but still are not sure what the

cause is - I just wanted to let you know this so you don't feel like it it

the helmet that has caused the seizures - my prayes are with you as I know

from seeing what my friend is going through how worried you must be.

My thoughts & prayers are with you

Regards

nna

Brisbane Australia

>From: lancerunje@...

>Reply-Plagiocephaly

>plagiocephaly

>Subject: POSSIBLE SEIZURE ALERT

>Date: Sun, 10 Feb 2002 04:53:12 EST

>

>My 16 month old son has been wearing a helmet for 6 months with OK

>progress.

>Like many others, we were told his head would pop out. We recieved his

>helmet at 10 months. He will wear it another 7. Long journey. Two weeks

>ago, he woke up from his nap, and heat was radiating from the holes in the

>helmet. Not warm, but absolutely HOT. About two minutes later, he had a

>seizure. Thank God not a grandmal seizure, a focal seizure, which looks

>like

>he has a shiver. He then proceeded to have 2 more. Within the hour we

>were

>at Children's Hospital in Seattle and having an EEG, which confirmed the

>seizures. He had a MRI the next day to rule out a brain tumor. He had

>about

>50 seizures in 5 days, and has not had any more in about 9. He is on an

>anti-seizure medication which has produced no side effects so far. Of

>course

>my first question was about the helmet, and 5 neurologists assured me it

>was

>not because of the helmet. I can't help but correlate the heat coming out

>of

>the holes to the seizure. I don't mean to frighten anyone, his helmet is

>back on, but has anyone heard of this before? Lori.

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[Guest guest]

Lori,

Welcome to the group. How very, very scary!!! I have never heard of seizures

being associated with helmets, however, I would agree with the others who

have suggested a 3D CT to rule out cranio if that hasn't been done already.

It is a good thing that you were so on top of things - good job! It sounds

like you handled it just right. Please let us know how your sweet baby is

doing.

Marci (Mom to )

Oklahoma

[Guest guest]

Lori,

I just saw a friend yesterday with a 7 week old who had a seizure after birth- so I happened to look up seizures and I did see they had a seizure related to heat being a factor. Mostly it was kids that suffered a fever that went really high and then had a seizure- I found this in the What to Expect in the 2nd year baby book. It said that this type of seizure is not damaging, and will usually only occur once. Just to be on the safe side, I would make sure that your son is very comfortable at home, with lots of ventilation and cool air. I would take off ' band when it was extremely hot when we were outside for short periods to make him more comfortable (we live in So. Fla, so some days were REALLY hot!)- and he had the top opened, so I can feel for you with a closed band and only holes for ventilation. I can't imagine 50 seizures in 5 days though. One question, you said it looked like the shakes, or a chill- will all of a sudden look like he just got a chill and do a little shiver- is this considered a seizure? He does it maybe 1-2 times a day when I notice it.

' Mom

[Guest guest]

,

Hello. Without doing an EEG, and having a seizure during that 30 minute span, there is no way to tell. We had all 6 neurologists tell us that they were'nt seizures, and then the EEG confirmed that they were. My will have a shiver like he is cold every few days, and our neuro told us that alot of times before little boys pee, they will shiver, and furthermore, shivering is not a typical characteristic of seizures. The shivers that I am talking about, are more than a little shake. It goes through his whole body, and makes him whooble. He hasn't had one for almost 2 weeks, and his neuro, is lowering his dose of medication, and says that since they don't know where they came from, they may easily disappear as they appeared. Thank God. I must reiterate to everyone about how they started. Heat was pouring out of his helmet for no reason. Hot air. It was actually pouring out of the holes. I immediately became alarmed, and then his first seizure hit. There is no doubt in my mind that it was from the helmet. Not that the helmet directly caused the seizure, but the helmet overheated his head, causing the seizures. We have it back on, and I just constantly check his temperature. I don't want to alarm anyone, and the doctors say that his helmet did not cause the seizures, but call it Mother's Intuition. Lori

[Guest guest]

Hi Lori,

Thanks so much for providing more detail about what the shakes are all about. I noticed it again this morning with my son , so I'm glad you told me about the peeing and shivers, because I was starting to worry! My husband always says, he gets the chills too- but I didn't think it was that. Glad to hear that your is doing better and I hope he doesn't go through anymore seizures! I totally believe you when you say it was the helmet, that Mommy instinct rarely fails us and if you could actually feel the heat pumping out, that poor little head was really overheated! I did read about seizures occurring from heat, so it could very well be that his head was just too hot. I think your a great Mom for going with your gut instinct and checking the temp. regardless of what your Doc says. I would monitor that heat and try to keep him as comfortable as possible (my son also got hot and sweaty, but I think the opening on top helped keep him cool as well- and again- maybe each child has a different threshold of heat or tolerance). Good luck to you all, God bless your little boy and please keep us updated on how he's doing with it! Hope your breathing a sigh of relief soon!

' Mom

[Guest guest]

Hey Lori-my son had seizures at 4 months when he was wearing his doc band-but

it was definitely febrile related. We ended up in the hosprialt for 2 nights

no other signs of fever and they believed it was a side effect from his 4

month vaccines. He had a temp of 105.7 when we got to the hospital and had

Tylenol 45 minutes prior and no helmet on. Thankfully he has had no

reoccurrence-but he seems to be prone to getting high temps-like this am he

woke with a cold and has 102 fever so everytime he got a fever we took his

band off-also we kept a fan running inhis room at all times when he slept and

no socks to try and keep from the heat containing itself. I am so sorry it Ws

such scary time for us-but I hope things get better. Positive thoughts your

way.

Beck Mom to

Memphis

[Guest guest]

Lori:

I'm glad your son hasn't had another seizure. I'd panic if that

happened to my girl. Was his room especially hot when the seizure

occured? I pray he won't have another seizure. My sister's best

friend's daughter had 2 seizures last summer when it was really hot

out (she's 6 yrs old)- they never found out what caused them, she was

also on meds like your son and thankfully hasn't had one since. Not

knowing would be so scary.

Debbie Abby's mom DOCGrad

MI

> ,

> Hello. Without doing an EEG, and having a seizure during that 30

minute

> span, there is no way to tell. We had all 6 neurologists tell us

that they

> were'nt seizures, and then the EEG confirmed that they were. My

> will have a shiver like he is cold every few days, and our neuro

told us that

> alot of times before little boys pee, they will shiver, and

furthermore,

> shivering is not a typical characteristic of seizures. The shivers

that I am

> talking about, are more than a little shake. It goes through his

whole body,

> and makes him whooble. He hasn't had one for almost 2 weeks, and

his neuro,

> is lowering his dose of medication, and says that since they don't

know where

> they came from, they may easily disappear as they appeared. Thank

God. I

> must reiterate to everyone about how they started. Heat was

pouring out of

> his helmet for no reason. Hot air. It was actually pouring out of

the

> holes. I immediately became alarmed, and then his first seizure

hit. There

> is no doubt in my mind that it was from the helmet. Not that the

helmet

> directly caused the seizure, but the helmet overheated his head,

causing the

> seizures. We have it back on, and I just constantly check his

temperature.

> I don't want to alarm anyone, and the doctors say that his helmet

did not

> cause the seizures, but call it Mother's Intuition. Lori