inpatient psych/ med unit- too wild for IVIG

[rockytop]

i know this is horrible, I have read all about this and have been dealng with a HUGE problem for 18 months- basically what it boils down to is that my 12 yo needs IVIG - but we have to get her calm enough for it. Valium did not work and it seems that risperdal does not either. I am wondering has anyone ever had a child admitted for say, "altered mental status" to get them sedated for IVIG or PLasmaphereis? Children's National medical Center (in DC) has a neurobehavioral unit- kind of a psych/medical unit- but I do not know if they are a PANDAS- friendly place- if you know what I mean! My daughter is actually not technically PANDAS (no high ASO) and was acutally diagnosed with "post-infectious encephalitis". IF these meds do not work to "calm her" any ideas? anyone had a child sick enough for PEX or IVIG but too "sick" to have it done? I have not approached this with the doc yet- I am hoping something will start working- but want to be prepared in case they do not!

[thereishope]

I'm sorry. It doesn't seem fair when you have enough going on to have more stress put on you, does it?

 

First, a low ASO can still be PANDAS. So, you don't have to say that your child "isn't technically PANDAS". Titers are not a diganostic test.

 

Have you tried a steroid burst yet? If so, how did she respond to it?If she had a good response, talk to the doctor about giving her another one in hopes that she has the IVIG when she is having some improvement from the steroid burst.

Edited April 16, 2010 by Vickie

[Stephanie2]

Ditto on the titer not being definitive. My 5 year old is a textbook case but does not have titer elevations even after a positive rapid culture.

 

Also, I am sorry if this sounds niave, but maybe you could round up enough adults to just hold her down? It took 4 adults to hold down my 5 year old to insert the IV. Maybe you need 6 or 8 adults, but it would be worth it if that's what it takes. Where are you having this done? I am sure your daughter will not be the only wild child, ya know? Our doc said that they do this with 6 foot male teenagers. They just do what it takes to get it done even if the office gets torn apart in the meantime. That is their job in my opinion.

 

Let us know how it goes! Good luck!

Stephanie

Edited April 16, 2010 by Stephanie2

[T_Mom]

Emuls, I am SO sorry you are going through this crisis. I am bouncing this up to see if anyone might have feedback on this critical issue for you--

Also on the use of the specific psych drugs you mentioned--

Best--TMom

[rockytop]

I'm sorry. It doesn't seem fair when you have enough going on to have more stress put on you, does it?

 

First, a low ASO can still be PANDAS. So, you don't have to say that your child "isn't technically PANDAS". Titers are not a diganostic test.

 

Have you tried a steroid burst yet? If so, how did she respond to it?If she had a good response, talk to the doctor about giving her another one in hopes that she has the IVIG when she is having some improvement from the steroid burst.

 

she did a very short steroid trial and we saw a very slight improvement. I am not sure of the doctor's plan- but we see a doctor that is very well known and respected by the people on this forum. the doctor seemed very confident that they could help us- but the prerequisite of her beign calm (which she is- as long as she is doing what she wants- eating, watching tv, avoiding life) really makes things difficult.

As far as holding her down for treatment- I have no problem with that- at this point she has to be carried (kicking and screaming) out of the house for anything. She has a PICC line in for her lyme disease abx (not currently being used) so we already have IV access!

 

anyone have any ideas or know anything about children's (children's hospital here in DC) neurobehavioral unit?

 

i do not know where or when this will be done. We were unable to get specifics from doctor as my daughter wouold not leave room when we met dr and would get very agitated when doc would talk about anything related to getting her better. UGH!!!

[rockytop]

Emuls, I am SO sorry you are going through this crisis. I am bouncing this up to see if anyone might have feedback on this critical issue for you--

Also on the use of the specific psych drugs you mentioned--

Best--TMom

what does that mean?? Thanks for your help!!!!! (bouncing this up)

[peglem]

Well, no way you can hold her down for the duration of the procedure! At the dentists office, when my daughter goes in for cleanings, they have this big ol' papoose board with very strong velcro that they use to help her hold still. I hate it, but she needs the dental care and she can't hold still, even if she tries, and putting sharp objects in her mouth while she jerks around is a bad idea.

 

How much valium did you try? My 100lb daughter does well on 30mg, which is a lot, but lower doses don't work for the really scary stuff. Can't the doctor who is ordering the IVIG order sedation for the procedure? Does she just need sedation to get hooked up, or throughout the whole procedure?

[rockytop]

Well, no way you can hold her down for the duration of the procedure! At the dentists office, when my daughter goes in for cleanings, they have this big ol' papoose board with very strong velcro that they use to help her hold still. I hate it, but she needs the dental care and she can't hold still, even if she tries, and putting sharp objects in her mouth while she jerks around is a bad idea.

 

How much valium did you try? My 100lb daughter does well on 30mg, which is a lot, but lower doses don't work for the really scary stuff. Can't the doctor who is ordering the IVIG order sedation for the procedure? Does she just need sedation to get hooked up, or throughout the whole procedure?

They ordered valium 5 mg bid- we did give her 10 mg at once ( for her PICC line change) and it did not really calm her noticably. She would need to be sedated the whole time. do they ever do IV sedation for IVIG? That is what I need!

We need dentist work done, too- she has 2 teeth that need to be pulled & i am praying she does not get an infection in them ..

[peglem]

For my daughter I start her out at 30mg- 10mg every half hour, so it eases her in, then we give another 10mg every 2 hours. This is what her psychiatrist approved for getting her on the airplane (to see Dr.L) and this is what her pediatrician has authorized for IVIG. We still have a bit of a struggle, but we can manage on that. My daughter has been completely sedated (w/ anethesiologist) for dental procedures & MRIs.

[thereishope]

Whenever you post something on a thread it gets "bounced up" on the list of threads on the main page. So, by posting something, anything (sometime people do just a dot), it gets put back to the top of threads to view and a whole bunch of new peoplemay see it. Otherwise, no responses mean it gets buried amongst threads and some people may not see it.

 

 

 

Emuls, I am SO sorry you are going through this crisis. I am bouncing this up to see if anyone might have feedback on this critical issue for you--

Also on the use of the specific psych drugs you mentioned--

Best--TMom

what does that mean?? Thanks for your help!!!!! (bouncing this up)