Babysitters?

[chmmr]

I'm curious what everyone here does about babysitters? Do you have any other than family/adults, and if so what/how do you educate them with.

My daughter has mostly had partial seizures but with a worsening EEG i have been told she is at risk for having TC (she has had a couple before when she was little and her twin has had a febrile convulsion)which obviously makes me leery to have a young teen babysit but by the same token, we have very limited family that babysits (just my mom) and the world can't stop permanently while we wait for her to "maybe" have a seizure.

Thoughs?

 

[donnajane]

Basically my husband and I are with our little boy when we are at home and we don't use baby sitters much. If something has come up we have been very lucky and able to call his "aide" from child care to come over and watch him for us. When I am at work he is in child care at work, right next to my office (I can look out my window and see him and my daughter). He has an aide at child care and if they need me I can be there within a minute or 2.
Unfortunately my parents live several hours drive away so they are unable to help and my brother, his wife and my brother in law are all 'uncomfortable' with the what if he has a bigger siezure to look after him and also we have a 3yr old and a 5yr old.
At the moment I am trying to build up the 'courage' to employ a sitter to go out for dinner with by husband, something we haven't done pretty much since our youngest was born. We are thinking of either asking his aide or another child care worker from his centre. My husband jokes that our kids will be OK but he is sure I will be checking my phone the whole time.

What about ringing a local child care centre and see if they have someone they could recommend?

 

[rakowskidp]

Our son is too big and too unpredictable to leave with most babysitters. In fact, that was the case before he started having seizures, but then, we had a short list of trusted individuals who were capable of handling him. Now, we will only leave him with his grandmother, who is a nurse and knows exactly what to do if he has a tonic-clonic seizure. Sadly, I don't know too many others who'd be able to handle such a situation.

 

[rakowskidp]

I would like to bump this topic back to the top. My wife and I will celebrate 15 years of marriage this Friday, and would like to do something nice to mark the occasion. But I'm terrified about what could happen to Jake while we're gone. What happens if he seizes (or worse - goes into status) and the babysitter is unable to move him into a safe position? What if she's unable (or, understandably, unwilling) to safely administer diastat?

I mean, it's not like it'd be the end of the world for us to order in a nice takeout meal and spend the evening with our children. But there may be occasions on which we MUST leave Jake with a sitter, and we need to be prepared.

Any ideas, folks?

 

[chmmr]

I would like to bump this topic back to the top. My wife and I will celebrate 15 years of marriage this Friday, and would like to do something nice to mark the occasion. But I'm terrified about what could happen to Jake while we're gone. What happens if he seizes (or worse - goes into status) and the babysitter is unable to move him into a safe position? What if she's unable (or, understandably, unwilling) to safely administer diastat?

I mean, it's not like it'd be the end of the world for us to order in a nice takeout meal and spend the evening with our children. But there may be occasions on which we MUST leave Jake with a sitter, and we need to be prepared.

Any ideas, folks?

Does your son seize a lot? (like daily?) The people that i have talked to recently and that i know well, obviously avoid leaving their child with a sitter if they are going through a bad spell. If they are doing "ok" then they are more comfortable with the idea. I have been giving this a lot of thought lately since we know my daughter has a possibility of having a tonic clonic relatively "out of the blue" based on a recent EEG, but no one really knows, where when or if it will happen for sure and whether it will be prolonged etc.
I am gathering info for babysitters that i found online so that they have all the info before hand (and certainly for a child prone to TC i would want them to have seen what one looks like on you tube-it's a scary thing even when you are used to it, but to not know what to expect and then have it happen is so much harder in my opinion).

**i had a link here but apparently i can't post links yet-if you google babysitters and epilepsy i found a page on the BC epilepsy website that has a lot of good info for them-or if you pm me i can send you the link **

Also i would think that in a situation like yours making sure you have rules about things that are and aren't allowed (watching tv is ok,playing board games card games, reading books, floor play in the house etc all ok, playground in the backyard isn't etc) while the sitter is there based on what you feel is appropriate and keeps him safe. As far as meds go i think you have to have a really good feel for whether or not they will administer those emergency meds, and if not, you need to be giving them instructions to call an ambulance for a prolonged seizure (is there a reason you are using diastat-i recently read some studies that say that midazolam is easier for caregiviers and schools etc to administer and more "socially acceptable" and just as, or more effective than giving the diastat).

So i guess condensing my thoughts, there needs to be an action plan, what things the sitter needs to watch for, when you want to be called, and what to do in the event of a TC and or prolonged TC.

Good luck-i hope you get to have your dinner out!

 

[rakowskidp]

Does your son seize a lot? (like daily?) The people that i have talked to recently and that i know well, obviously avoid leaving their child with a sitter if they are going through a bad spell. If they are doing "ok" then they are more comfortable with the idea.

I believe he's having daily absence seizures, but not tonic-clonic. But, the time between t-c's has been getting shorter and less predictable lately. He's also been through a few adjustments in medication, and things are inherently less stable during those transitions.

I have been giving this a lot of thought lately since we know my daughter has a possibility of having a tonic clonic relatively "out of the blue" based on a recent EEG, but no one really knows, where when or if it will happen for sure and whether it will be prolonged etc.

That's hard, isn't it? It's exactly what has me so concerned.

(in our case, the interictal EEG indicated no abnormal electrical activity)

I am gathering info for babysitters that i found online so that they have all the info before hand (and certainly for a child prone to TC i would want them to have seen what one looks like on you tube-it's a scary thing even when you are used to it, but to not know what to expect and then have it happen is so much harder in my opinion).

I think that's a wonderful idea! I'll suggest that to the mom of one of our babysitting families. They may be uncomfortable watching him after seeing such a video, but at least I'd know that ahead of time.

Also i would think that in a situation like yours making sure you have rules about things that are and aren't allowed (watching tv is ok,playing board games card games, reading books, floor play in the house etc all ok, playground in the backyard isn't etc) while the sitter is there based on what you feel is appropriate and keeps him safe. As far as meds go i think you have to have a really good feel for whether or not they will administer those emergency meds, and if not, you need to be giving them instructions to call an ambulance for a prolonged seizure

No doubt, I would simply recommend calling 911 in case of a serious situation, like status epilepticus. I wouldn't want any babysitter to feel responsible for a child in a situation like that!

(is there a reason you are using diastat-i recently read some studies that say that midazolam is easier for caregiviers and schools etc to administer and more "socially acceptable" and just as, or more effective than giving the diastat).

We're using diastat because that's what the doctor prescribed. Too, I didn't realize there were alternatives until very recently. I'm going to talk to the doctor about intranasal midazolam ASAP. There are a few more steps involved in getting it ready for administration, though. The diastat syringes are dialed up and locked into the proper dose as prescribed by the doc, while midazolam has to be measured out immediately before administering (or, at least, that's what I've read so far).

So i guess condensing my thoughts, there needs to be an action plan, what things the sitter needs to watch for, when you want to be called, and what to do in the event of a TC and or prolonged TC.

Good luck-i hope you get to have your dinner out!

All very good ideas, thank you!

 

[chmmr]

Personally i think you have to be ok with telling ANY sitter to call 911 whenever they get out of their comfort zone-trying to explain status to a lay person and how to identify it (outside of status TC's but there can be nonconvulsive status too-not sure if your son has that issue). Explain to them that TC's under 5 minutes are ok, other seizures under 15 miinutes are ok etc, but basically i had a chat with my hubby and we both agreed that no matter what, if there is a babysitter with our kids (or my oldest son who turns 11 soon) and they are in a position where they have a seizing child and for whatever reason they need help and can't get it from a neighbor across the street (a close friend of mine lives across the street from me), we are perfectly content for them to call 911 and have the ambulance come. Is it a pain in the butt? yes sure, but is it worth the piece of mind for them (and us) to pay the small ambulance fee?
I know our hospital, and the pediatricians here in town would be able to check my dd's chart and have her discharged in fairly short order without any unnecessary interventions (and obviously any sitter that calls an ambulance will be advised to ask the 911 operator to call the parents or she can call us as soon as EMS arrives). Even my own mom who saw and ugly febrile convulsion when i was a toddler, and was here when my non-E son had a febrile convulsion turned blue and seized for 2 full minutes, has said if my dd has a big seizure she will call an ambulance without waiting the 5 minutes.
The one sitter we have had so far was 16, and i told her if there was a seizure, she can call me the minute it starts and not only will i stay on the phone with them but you can be darn sure i will already be jumping in my car and on my way back to the house.

ETA i think the dosing would be my biggest concen with midaz is dosing. I did see some mention of pre-filled syringes so that may be an option, and you would have to check with a doc or neuro but the little girl that i know that has it, her parents are able to draw some up in a syringe and have it for a certain length of time before it goes bad in the syringe). I would bet though that if you can get reliable dosing from a sitter, the time it takes to draw up midaz is faster than the time it would take to try and pull clothing off a seizing child and give rectal distat (just guessing that based on my knowledge of midaz-i have never had to give diastat)

 

[jimj]

I've been known to beat the midazolam drum before. You can create your own pre-filled syringes. We just draw up the correct amount in the syringe like you would any other med. We keep our pre-filled syringes in a plastic travel toothbrush holder and then put that in a small bag to keep it out of sunlight. I seen others report these homemade pre-filled syringes should last a month or two. In my experience they seem to work fine even at the two month mark (I’ve never tested anything older than that). Note that intranasal midazolam doesn’t need to be sterile since it’s sprayed into the nose (not injected with a needle).

I've got a few more midazolam details recorded here:
https://docs.google.com/document/d/...0Ti8DA67QLzL01y4c/edit#heading=h.mpwb9d4hrpcq