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

[KidGrind]

Seizures can be very serious. My daughter’s high school friend died due to a seizure.

I would not provide care for the child because I do not have the capacity & staff to do meet the child’s needs. My program is not the right fit for the child.

[nannyde]

I disagree with this no big deal attitude...seizures CAN be serious! This is directly from epilepsy.com and the same guideline/descriptions can be found on many websites:

Most people don’t understand how serious seizures can be. They either think that seizures are not a problem or that everyone may die from them. The truth lies somewhere in between. The types of problems people may have range from injuries, the effect of repeated seizures on the brain, seizure emergencies, and death.

This is a scary topic to read and talk about. But it’s important to know the facts so you know what questions to ask your doctor and health care team. Also, knowing your risks, or those of your loved ones, may help you learn what to do to lessen these risks!
What type of injuries can occur?

Some seizures rarely cause problems for people, but overall, the chance of injury is higher for people with uncontrolled seizures. The type of injuries a person may get depends on the type of seizure, how long the seizure lasts, where the seizure occurs, and if it develops into an emergency.

Some common injuries may include:

Bruises
Cuts
Burns
Falls

More serious problems, such as broken bones, concussions, head injury with bleeding into the brain, or breathing problems usually are seen in people who have generalized seizures with falls, long seizures or repeated or clusters of seizures.

Seizures can be life threatening. The one little girl who had seizures in my house.. first one at age four... has gone into cardiac arrest twice.

[nannyde]

Don't term because of the seizure possibility.

Term because you can't provide the environment he needs (to be able to sleep at will) and because you don't have the extra eyes/hands to provide the one to one care/supervision he needs.

Do NOT say it's because of the seizures.

Make sense?

I would absolutely keep a kid with a seizure disorder if they had an aide. I know I could manage the medication and the supervision. I just can't afford to offer the adult with the eyes on the child at all times.

If I could have a grant for that ... to get an extra adult.. I would be fine with it.

[KiddieCahoots]

I may be mistaken, but if I remember correctly, the medication Diastat is specifically to stop the seizures from continuing. Seizures that are more extreme than a normal epileptic seizure.

[Play Care]

Not in dc, but when I was a service coordinator for a day hab. When any of our folks had a seizure disorder they had a 1:1 staff. But our program was a traveling one, so that could have been why.

I could NOT administer meds. I am not certified. And after a morning like this one - full house, new infant, etc. I would not be comfortable as I know I couldn't have eyes on the child at all times. It would mean additional staff.

[Laurel]

Thank you for sharing. I'm sorry you and your son went through that.
I guess I'm not really afraid if he physically has one here, I just worry about the other children, especially since all but one are 2.5 and under.

Exactly, that would be my concern too.

The other children might be upset if they saw it also especially the psychomotor type.

If you had another person, it would be do-able. Nannyde had a good idea. Maybe a grant to hire another person if you wanted to go that route. That could be more problems though. What if he/she was unreliable and didn't show up one day?

My son started at 3 months old and he was our first so we were inexperienced parents anyway. He spent his first Christmas in the hospital. Then at age 12 months he had the psychomotor kind. Finally they got his meds straightened out and he didn't have any more problems. Then outgrew them. BUT I still think something is not quite right in his brain. He has always been forgetful although he says he always remembers things when they are truly important like things at work. He is fine with regular life and employment but his fiance was so relieved to hear that his 'forgetfulness' had a reason. We just have to keep reminding him of things. "Remember honey, you are taking us to the airport tomorrow." Tomorrow morning we call. "Are you up?" ::

Laurel

[Laurel]

P.S. Oh and I forgot. This is kind of funny. He also forgets things that he needs. Once he was interested in going into law enforcement and we just all looked at each other rolling our eyes. He is used to us kidding him but I said jokingly "You couldn't be a cop. You'd be in hot pursuit and then realize you forgot to put your gun in your holster." Or you'd pull someone over to give them a speeding ticket and have to let them go cause you forgot to bring your ticket book." ::

[melilley]

Exactly, that would be my concern too.

The other children might be upset if they saw it also especially the psychomotor type.

If you had another person, it would be do-able. Nannyde had a good idea. Maybe a grant to hire another person if you wanted to go that route. That could be more problems though. What if he/she was unreliable and didn't show up one day?

My son started at 3 months old and he was our first so we were inexperienced parents anyway. He spent his first Christmas in the hospital. Then at age 12 months he had the psychomotor kind. Finally they got his meds straightened out and he didn't have any more problems. Then outgrew them. BUT I still think something is not quite right in his brain. He has always been forgetful although he says he always remembers things when they are truly important like things at work. He is fine with regular life and employment but his fiance was so relieved to hear that his 'forgetfulness' had a reason. We just have to keep reminding him of things. "Remember honey, you are taking us to the airport tomorrow." Tomorrow morning we call. "Are you up?" ::

Laurel

This dcb also had an MRI (I think that's what he had-mom wasn't sure what it was called) and it showed that there is a spot on his brain that didn't develop correctly. You can definitely tell something is different about him, but I can't quite put my finger on it. He stares off into space often and will just sit there for a couple of minutes. It sometimes takes him an hour to eat a meal, he had no problem eating fast before, but within the last 6 mo. or so, he seems to take forever, the staring has a lot to do with it. He's going to get more tests done at a children's hospital. That's another thing, mom said that he needs to see a neurologist because when he was in the hospital, the neurologist that was supposed to be there, was on vacation, but dcm said that she doesn't know when she's going to see one because of her work. That really bothers me. If he was my child and was in the hospital for 3 days and they suggested he see a neurologist, I would be immediately on the phone calling to get the first available appt.! He also only says "my mama, and no". He's getting evaluated for that too.
Sorry, probably too much info.

[satcook]

Diastat

My daughter has severe brain damage and has seizures as a result. I would not be comfortable with the diastat as you were given very little instructions with it. We would NEVER use her diastat for staring seizures, or petite mal. She will have episodes where she zones out and her eye twitches. If that goes on longer than 5 minutes then we have a pill that we give her down her g-tube. The diastat is to be used only for grand mal seizures that last longer than 3 minutes. Once it is given the seizure stops, but she sleeps for 5-6 hours after we give it.

I would be uncomfortable with your daycare kiddo as you have been given very little instruction.

Lori

[melilley]

My daughter has severe brain damage and has seizures as a result. I would not be comfortable with the diastat as you were given very little instructions with it. We would NEVER use her diastat for staring seizures, or petite mal. She will have episodes where she zones out and her eye twitches. If that goes on longer than 5 minutes then we have a pill that we give her down her g-tube. The diastat is to be used only for grand mal seizures that last longer than 3 minutes. Once it is given the seizure stops, but she sleeps for 5-6 hours after we give it.

I would be uncomfortable with your daycare kiddo as you have been given very little instruction.

Lori

Thank you, I'm sorry your dd has to go through that.
I am not comfortable at all. Plus, here licensing does allow us to administer meds, but my licensing consultant strongly advised against giving any meds at all.

[sahm1225]

I have diastat for my dd2 1/2. It's kind of like an enema, and you only use it if the seizure lasts for more than 3 minutes and it's a grand mal seizure. She sees a neurologist and has never had a seizure but has some medical Conditions that make her more likely to have seizures. Her brain MRI also showed some abnormalities that are also linked to having seizures.

That being said - she's never had a seizure. In the event of a seizure, we were instructed to do the diastat AND call 911. (Not for the absent seizures, we were told to log the lenght of time and frequency they occurred).

If he's on seizure medication, shouldn't they be under control?

Unless the mom is willing to provide a specific medical plan AND I had the staff support in case of a seizure, I wouldnt be comfortable providing care.

The moms nonchalant attitude about it would be what would make me say 'no'.

[Blackcat31]

I have diastat for my dd2 1/2. It's kind of like an enema, and you only use it if the seizure lasts for more than 3 minutes and it's a grand mal seizure. She sees a neurologist and has never had a seizure but has some medical Conditions that make her more likely to have seizures. Her brain MRI also showed some abnormalities that are also linked to having seizures.

That being said - she's never had a seizure. In the event of a seizure, we were instructed to do the diastat AND call 911. (Not for the absent seizures, we were told to log the lenght of time and frequency they occurred).

If he's on seizure medication, shouldn't they be under control?
Unless the mom is willing to provide a specific medical plan AND I had the staff support in case of a seizure, I wouldnt be comfortable providing care.

The moms nonchalant attitude about it would be what would make me say 'no'.

From my understanding anti seizure medication is not an exact science and relying on the meds to stop seizures isn't always a sure thing.

I have a friend who has a 16 yr old DS who takes anti seizure meds. He is continuously being seen for med adjustments and fine tuning his dosages etc.

Seems as the child ages, matures and changes so does the affects of the meds.

Personally, I just wouldn't be able to relax and would feel as though the meds were giving a false sense of security in preventing a seizure.

[sahm1225]

From my understanding anti seizure medication is not an exact science and relying on the meds to stop seizures isn't always a sure thing.

I have a friend who has a 16 yr old DS who takes anti seizure meds. He is continuously being seen for med adjustments and fine tuning his dosages etc.

Seems as the child ages, matures and changes so does the affects of the meds.

Personally, I just wouldn't be able to relax and would feel as though the meds were giving a false sense of security in preventing a seizure.

Agree 100%

[Mom of 4 logged out]

I have a 2 yo dcb who was in the hospital for 3 days last week because he had a few seizures in one day. He's never had one before this. He now has medicine called Diastat just in case he has one here and I have to put it in his bottom with a syringe. I am really not comfortable with this. Has anyone had any experience taking care of a child that may have a seizure at your house? I am really nervous that he will have one here. How big of a deal is this? And dcm also said that they said to let dcb sleep as much as he wants, that's kind of hard here. Plus, what if he has a seizure in his sleep?! Also, dcb is always staring into space and dcm said that he may be having Grand mal seizures when he does this, but from my research, you shake violently during these types (is that right?) and he doesn't do that (this particular dcm likes to self diagnose her children and does it often). Dcb has to to to a children's hospital to get more testing done, but this makes me so nervous. I have a few light days until I fill a spot, but on most days I will have 4-5 other young children here with just myself here.

Here's my rant about this situation: I'm a little concerned because yesterday, dcm called me in the afternoon to explain to me what the doctor's said and to explain what to do with the medicine. As she's talking to me, she's also talking to someone in the background, which she always does when she calls me. Then while she's explaining things, she rushes and tells me she has to go because they have to rehome their dog and they are at the prospective "parents'" house. I asked her a question and she frantically answered and then let me go. Apparently she couldn't take 5 more minutes to talk about her child's health! I was in shock! Don't you think that your child's health is more important than a dog? I just don't get some parents.

I did talk to dcd this morning and he explained a little more, but I'm still super nervous. Should I be?

Staring into space is absence or "petit mal" seizures. It's usually harmless, and a lot of kiddos outgrow it. My son did. No worries.

As for the rest of it, I have to log in at work and can't respond but OMG!

[Laurel]

This dcb also had an MRI (I think that's what he had-mom wasn't sure what it was called) and it showed that there is a spot on his brain that didn't develop correctly. You can definitely tell something is different about him, but I can't quite put my finger on it. He stares off into space often and will just sit there for a couple of minutes. It sometimes takes him an hour to eat a meal, he had no problem eating fast before, but within the last 6 mo. or so, he seems to take forever, the staring has a lot to do with it. He's going to get more tests done at a children's hospital. That's another thing, mom said that he needs to see a neurologist because when he was in the hospital, the neurologist that was supposed to be there, was on vacation, but dcm said that she doesn't know when she's going to see one because of her work. That really bothers me. If he was my child and was in the hospital for 3 days and they suggested he see a neurologist, I would be immediately on the phone calling to get the first available appt.! He also only says "my mama, and no". He's getting evaluated for that too.
Sorry, probably too much info.

No, not too much information. That sheds a new light on things. He needs to see the neurologist asap. I would be uncomfortable with him at my house too.

I feel sorry for the little guy though.

Laurel