Does Anyone Have Experience With A Dck Who May Have Seizures? Questions/Rant..

[Laurel]

I haven't had a child in my day care that has seizures, but my own daughter, Jessica (now 32) has Rett Syndrome and seizures come along with that. I've seen her have lots of seizures, and before having her, yes... seizures would have scared me silly! Hers aren't real bad, she sort of twitches and turns a bit blue because she doesn't breathe, but it never lasted for more than a minute. It was scary to watch her color change!!! Usually she was laying or sitting when she'd have them, only once she was standing and hit her head falling down and got a bump. She lives with other people now, since she was 16 and I believe she is still on Depakote, a red liquid medicine.

I can't believe they are using a suppository medicine for that child! That's weird! It depends on how severe his seizures are. The staring seizure you described is a Petit Mal, not a Grand Mal... which has convulsions. So too bad for this little guy to have that! Regardless of where or who he is with, if he's having the seizures you just make him comfortable and he will come out of it. If I have very many kids in my care I wouldn't want to try to deal with that just because I wouldn't be aware all the time what's going on with him. I always stayed by Jessica until her seizures were over. They don't "swallow" their tongue and all that stuff... my only fear with her was the breathing. But her medicine pretty much keeps her from having them from what her care takers say.

Luckily my son never stopped breathing (that I could tell anyway). I didn't realize that happened with seizures. He had grand mals with convulsing and eyes rolling, etc. It was so long ago but I remember he was on Dilantin and Phenobarbitol but he did outgrow them. We gradually weaned him off meds per doctor's instructions and he was okay.

Laurel

[NightOwl]

Luckily my son never stopped breathing (that I could tell anyway). I didn't realize that happened with seizures. He had grand mals with convulsing and eyes rolling, etc. It was so long ago but I remember he was on Dilantin and Phenobarbitol but he did outgrow them. We gradually weaned him off meds per doctor's instructions and he was okay.

Laurel

My brother takes those meds exactly! Pretty hefty doses too. A lot of people stop breathing during a seizure. Breath holding is a more accurate term. But scary, nonetheless.

[Blackcat31]

well, lets see I have had a child that is deaf and she screams pretty loud because she doesn't know how loud she is and my little kids learn that we love her anyway and I teach them that her ears don't work and that's why she screams and is sometimes scary I teach them sign language and they LOVE her

I also have taken care of a boy that had down syndrome and he would do some "scary" things but my kids loved him and learned how we are all different and special but worthy of acceptance

For a child with epilepsy I would explain that child sometimes might start shaking and maybe even fall on the floor because he has a little problem with part of his head but he's O.K. and it will be over soon and lets's just get some pillows around him until it's over( in a mild case)
Lesson? empathy, acceptance, love, and caring
Now I am not saying that OP should take the child but kids with disabilities or medical issues
deserve to have a chance in my opinion
My DD has epilepsy and she only had a couple seizures until we had it completely under control with meds and she never had a seizure again

Cool! Glad it works for you.

It's just not something I would choose to expose my DCK's to.

[Unregistered]

My daughter's seizures lasted between four and five minutes. She was not breathing, and her face was totally blue. Once the convulsion stopped, I tried to begin CPR because she was blue, limp and not breathing. Her jaw was locked closed so that was impossible. The doctors said later that while they do not "swallow their tongue", their tongue CAN fall back and block their airway, which is what they believe happened to my daughter. Out of desperation, while waiting for the paramedics, I did a heimlich maneuver and her tongue apparently dislodged and she began to breathe. Because of the length of the seizure she could have had serious brain damage or even lived the rest of her life in a vegetative state, according to her doctors.
I do not believe child care is appropriate for a child who has seizures until they are deemed stabilized and have had some time seizure free. They need one-to-one care until then so that someone has their eyes on them all the time. The seizures came out of nowhere. One minute she was walking around and the next she was down, jerking and not breathing. Plus I would never have wanted a provider to take her unless they were comfortable with everything and I was comfortable with them.

[NightOwl]

My daughter's seizures lasted between four and five minutes. She was not breathing, and her face was totally blue. Once the convulsion stopped, I tried to begin CPR because she was blue, limp and not breathing. Her jaw was locked closed so that was impossible. The doctors said later that while they do not "swallow their tongue", their tongue CAN fall back and block their airway, which is what they believe happened to my daughter. Out of desperation, while waiting for the paramedics, I did a heimlich maneuver and her tongue apparently dislodged and she began to breathe. Because of the length of the seizure she could have had serious brain damage or even lived the rest of her life in a vegetative state, according to her doctors.
I do not believe child care is appropriate for a child who has seizures until they are deemed stabilized and have had some time seizure free. They need one-to-one care until then so that someone has their eyes on them all the time. The seizures came out of nowhere. One minute she was walking around and the next she was down, jerking and not breathing. Plus I would never have wanted a provider to take her unless they were comfortable with everything and I was comfortable with them.

This sounds like what happens when you have to open the airway with cpr because the tongue DOES fall back to block the throat. I'm so sorry you had to experience that. You must have been beyond terrified.

With my brother, I just knew he was going to die that day. His epilepsy is due to a past head injury. They said he would eventually, probably, have seizures from it. It was 5 years post head injury when he had his first seizure. And they were BIG, MASSIVE grand mals that came one right after the other. He needed medical intervention to get them to stop. He ended up having 6 in a 4 hour period, pulled almost every muscle in his body, and tore a rotator cuff from the convulsing. His is an extreme case though, and very atypical of epileptics.

[Laurel]

My daughter's seizures lasted between four and five minutes. She was not breathing, and her face was totally blue. Once the convulsion stopped, I tried to begin CPR because she was blue, limp and not breathing. Her jaw was locked closed so that was impossible. The doctors said later that while they do not "swallow their tongue", their tongue CAN fall back and block their airway, which is what they believe happened to my daughter. Out of desperation, while waiting for the paramedics, I did a heimlich maneuver and her tongue apparently dislodged and she began to breathe. Because of the length of the seizure she could have had serious brain damage or even lived the rest of her life in a vegetative state, according to her doctors.
I do not believe child care is appropriate for a child who has seizures until they are deemed stabilized and have had some time seizure free. They need one-to-one care until then so that someone has their eyes on them all the time. The seizures came out of nowhere. One minute she was walking around and the next she was down, jerking and not breathing. Plus I would never have wanted a provider to take her unless they were comfortable with everything and I was comfortable with them.

Oh wow, so scary. I'm glad you are sharing what you did in case I ever see anything like that. The Heimlich is a great suggestion.

[melilley]

Ok, I talked to dcm and apparently he had a seizure due to a high fever. They aren't sure what caused it and she said it may have been something viral. She also said that they said he's on the meds just in case and they don't think he should have another fever and they gave her the other meds just in case he does have one. She said she called and left a message with the neurologist and that if they don't call her back soon, she's just going to take him to the U of M Children's hospital. I guess she's a little more on top of it than she let on...if she really does take him.

If it's true that he had a seizure due to a high fever, is this a condition or can it happen just once because of the fever? I'm so confused.

She also said that she understands if I'm out of my comfort zone keeping him and if I decide to term, she understands. I told her that if he were to have a seizure here, that I'm not comfortable with the supervision issue of the other children (I said it in a more professional manner).

On one hand, if this is something that may happen again, I'm not comfortable with the safety issue, but if it's something that happened because of the fever then I'm not as concerned.
I am so confused!

[TwinKristi]

Oh sheesh... Febrile seizures, while scary, are actually really common and don't even need a trip to the ER. They've found that it's not always how high the temp is but how quickly it increases that cause febrile seizures. I don't think that's even a "condition" they would treat with anti-seizure meds let alone Diastat! my friend's son was diagnosed with Epilepsy this year at 8 and they just now, even after being on meds for awhile and not well controlled, put in a request for Diastat. So that's not like the first line of action in those cases.
What would be difficult is facing cold/flu season knowing if he gets a fever that you have to treat it swift and hard to try and prevent the seizure.
I wouldn't term over a single febrile seizure personally. A seizure disorder and a one time febrile seizure are very different animals!

[Unregistered]

Oh wow, so scary. I'm glad you are sharing what you did in case I ever see anything like that. The Heimlich is a great suggestion.

It was not a medically sanctioned idea. I just could not sit there and do nothing while my baby was blue and not breathing and no idea when help would arrive. Like I said, it was a desperation move.

[Blackcat31]

Ok, I talked to dcm and apparently he had a seizure due to a high fever. They aren't sure what caused it and she said it may have been something viral. She also said that they said he's on the meds just in case and they don't think he should have another fever and they gave her the other meds just in case he does have one. She said she called and left a message with the neurologist and that if they don't call her back soon, she's just going to take him to the U of M Children's hospital. I guess she's a little more on top of it than she let on...if she really does take him.

If it's true that he had a seizure due to a high fever, is this a condition or can it happen just once because of the fever? I'm so confused.

She also said that she understands if I'm out of my comfort zone keeping him and if I decide to term, she understands. I told her that if he were to have a seizure here, that I'm not comfortable with the supervision issue of the other children (I said it in a more professional manner).

On one hand, if this is something that may happen again, I'm not comfortable with the safety issue, but if it's something that happened because of the fever then I'm not as concerned.
I am so confused!

Written instructions for ALL possible scenarios from the child's doctor.

In situations like this, I would not accept the parents word....I would need detailed instructions about the child's condition (even if only temporary) AND written instructions from the child's doctor and/or neurologist in regards to plan of action BEFORE and AFTER.

[melilley]

Oh sheesh... Febrile seizures, while scary, are actually really common and don't even need a trip to the ER. They've found that it's not always how high the temp is but how quickly it increases that cause febrile seizures. I don't think that's even a "condition" they would treat with anti-seizure meds let alone Diastat! my friend's son was diagnosed with Epilepsy this year at 8 and they just now, even after being on meds for awhile and not well controlled, put in a request for Diastat. So that's not like the first line of action in those cases.
What would be difficult is facing cold/flu season knowing if he gets a fever that you have to treat it swift and hard to try and prevent the seizure.
I wouldn't term over a single febrile seizure personally. A seizure disorder and a one time febrile seizure are very different animals!

This is what I thought about febrile seizures.
Grrrr! I wish she would have explained better the first time! I don't get why they would give them meds just in case.

I think I'm going to see what the neurologist says and go from there, BUT I am going to require documentation.

Even though mom is a nutcase and a drama queen, I do care for dcb.

[Blackcat31]

melilly have you Googled Diastat at all?

LOTS of good info out there.

These two paragraphs were taken from Web MD and emedicine/health;


This medication is used to treat episodes of increased seizures (e.g., acute repetitive seizures, breakthrough seizures) in people who are already taking medications to control their seizures. This product is only recommended for short-term treatment of seizure attacks. It is not for ongoing daily use to prevent seizures. Uncontrolled seizures can turn into serious (possibly fatal) seizures that do not stop (status epilepticus).


This medication is usually given by a caregiver to the person who is having a seizure. Not all types of seizures can be treated with diazepam rectal. If you are the caregiver, do not give this medication unless you know how to recognize the symptoms of a seizure episode that should be treated with diazepam rectal


Just from what I've read it doesn't sound like they would prescribe this med for febrile seizures. :confused:

[craftymissbeth]

melilly have you Googled Diastat at all?

LOTS of good info out there.

These two paragraphs were taken from Web MD and emedicine/health;


This medication is used to treat episodes of increased seizures (e.g., acute repetitive seizures, breakthrough seizures) in people who are already taking medications to control their seizures. This product is only recommended for short-term treatment of seizure attacks. It is not for ongoing daily use to prevent seizures. Uncontrolled seizures can turn into serious (possibly fatal) seizures that do not stop (status epilepticus).


This medication is usually given by a caregiver to the person who is having a seizure. Not all types of seizures can be treated with diazepam rectal. If you are the caregiver, do not give this medication unless you know how to recognize the symptoms of a seizure episode that should be treated with diazepam rectal


Just from what I've read it doesn't sound like they would prescribe this med for febrile seizures. :confused:

From WebMD:

"Rectal diazepam (Diastat) also can reduce the risk of febrile seizures if taken at the time of a fever"

http://www.mayoclinic.org/diseases-conditions/febrile-seizure/basics/prevention/con-20021016

[Blackcat31]

From WebMD:

"Rectal diazepam (Diastat) also can reduce the risk of febrile seizures if taken at the time of a fever"

http://www.mayoclinic.org/diseases-c...n/con-20021016

Oh...I wasn't saying it wasn't for sure used for that, (I have NO clue...hence the Googling..) just that there is a TON of info out there but the biggest thing I did pick up was for a caregiver to NOT give it if they didn't know what it was for.

Sounded to me like DCM gave provider the diastat and said to use it if needed but didn't say it was for epilepsy, febrile seizures or just for the fun of it...kwim?

I just wouldn't proceed with dispensing ANYTHING until I had written instructions from an MD. period.

[NightOwl]

Febrile seizures! That's a whole new ballgame!! They can occur only once as a fluke due to rapidly rising fevers. But that DOES mean dcb is more prone to them in the future.

I agree that, if you decide to keep him, you insist on written, SPECIFIC instructions from the doctor and a release statement from mom allowing you to speak directly with the Dr office should you have any questions or issues.