ivig on monday

[norcalmom]

hello all - DS has ivig on Monday. He has new (ish) extreme fear of needles and jsut mentioning ivig (he does not know he's going yet) made him go beserk.

 

My husband will be out of the country next week, and unfortunatly won't be able to help me get him int he car and to the infusion center - close by, but inside a hospital, which may also freak him out)

 

Has anyone used any sedative prior to ivig to take the edge off enought to get the kid there? He's never taken anything bur benedryl..and I dont think that will cut it.

[peglem]

hello all - DS has ivig on Monday. He has new (ish) extreme fear of needles and jsut mentioning ivig (he does not know he's going yet) made him go beserk.

 

My husband will be out of the country next week, and unfortunatly won't be able to help me get him int he car and to the infusion center - close by, but inside a hospital, which may also freak him out)

 

Has anyone used any sedative prior to ivig to take the edge off enought to get the kid there? He's never taken anything bur benedryl..and I dont think that will cut it.

Valium, we use it every single time, mostly to just get her past the elevators! She gets her IVIG through a port now which has made the needle problem a thing of the past. (at least w/ IVIG)

[Tamistwins]

Aww good luck I hope everything goes smoothly for you and your son.

[SarahJane]

My son didn't need a sedative for his IVIg, but he came really close. Took 2 nurses & Dr K to get the IV in & then he was fine. I bet the infusion center could advise and give a dose of something to take prior to getting there. Good luck with this endeavor. Funny how you traveled across the country on your own for the first one, but the local one seems more daunting. Definitely don't mean funny as in "ha ha" tho'. Whew. Will be thinking about you both.

[norcalmom]

yes - he has developed this fear of needles - he never really like them to begin with (he gets lydocaine, a special lunch of his choice and usually some other "reward" almost every blood draw - he should love them! Its jsut gotten worse and worse. Its an irrational pandas thing for sure - he's numb from the lydocaine, and he will say he knows it doesn't hurt, its anxiety over the needle.

 

The first ivig was anxiety producing for other reasons. Once we got there and met Dr K - and the nurses at the center - AMAZING - it was actually relaxing. Someone else was making the medical decisions for a change (and a real doctor! not me !)

 

These nurses work with kids, but not pandas kids. Big difference!

 

And with all of Dr K's shennanigans, hard for Austin to even notice there were needles in the room. The guy is so suited for what he does. I like his new immunologist, esspecially that he is local, but he is dry and my son dislikes him. ..because he is "boring". And he is the one that made Austin get the most recent blood draw. I'm not even sure he will be there at the center during it. Hope the nurses are good. No word back from the psychiatrist that we saw once and got original dx from...was hopeing she might come through with some valium or something...(I could use it!!!)

[peglem]

yes - he has developed this fear of needles - he never really like them to begin with (he gets lydocaine, a special lunch of his choice and usually some other "reward" almost every blood draw - he should love them! Its jsut gotten worse and worse. Its an irrational pandas thing for sure - he's numb from the lydocaine, and he will say he knows it doesn't hurt, its anxiety over the needle.

 

The first ivig was anxiety producing for other reasons. Once we got there and met Dr K - and the nurses at the center - AMAZING - it was actually relaxing. Someone else was making the medical decisions for a change (and a real doctor! not me !)

 

These nurses work with kids, but not pandas kids. Big difference!

 

And with all of Dr K's shennanigans, hard for Austin to even notice there were needles in the room. The guy is so suited for what he does. I like his new immunologist, esspecially that he is local, but he is dry and my son dislikes him. ..because he is "boring". And he is the one that made Austin get the most recent blood draw. I'm not even sure he will be there at the center during it. Hope the nurses are good. No word back from the psychiatrist that we saw once and got original dx from...was hopeing she might come through with some valium or something...(I could use it!!!)

My daughter gets IVIG at a pediatric outpatient center of a local hospital. The nurses are WONDERFUL! They had not worked with other PANDAS kids before (and my daughter has some added challenges as well), but they had a lot of experience with scared children and are very skilled with helping them in a compassionate, caring way. Hope you can find a doc to rx some sedative to help. Will the immunologist rx some, since he is the doc ordering the procedure?

[EAMom]

Good luck Norcalmom!

 

I dont' have any info. on sedation. However, if you can, ask them about leaving the IV catheter (they can wrap it up in a bandage) in overnight so he doesn't have to get "poked" again for day #2.

 

Who are you seeing (immunologsit)? New guy at LPCH? You can pm me if you don't want to post. Thanks!

[norcalmom]

Yes - the new doc at Stanford. Imunologist that worked with Plasmid's son. Sean Mcghee. I can let you know more after the ivig and follow up. We only had one meeting, bloodwork, and a phone call, seems pretty open to pandas.

 

thanks for the advice and reassurance peg and Sarah- they do deal with kids a lot at this place...so they should be capable.

 

He asked if we had a psychiatrist, and I sent Margo an email (allthough we only saw her twice - the origially dx, and one follow up after the antibitotics) she was out today, but did send me an email asking if DS could go to hospital and see some kids getting it done and walk through ti with a doll or something, and she mentioned she was thinking of a couple meds that might be OK too.

 

He can't go to the hospital - He has "little league day" tomorrow - and all day extravaganza of awards and baseball games. It was late when I got her email - but I am hoping she calls me tomorrow and we get him something. So, I have hope anyway.

 

Thanks for all the input and advice!!

 

I am about to go back and read the old thread that you or buster wrote on the ivig at stanford and gammaguard v gammunex (sp) and double check the type of "flush" one uses saline, one sucrose..I think. scheduling the ivig happened too fast to even talk with the doctor about, so I'm pretty sure we will be getting whatever they usually use. But I think Dr B uses the other one. I don't know that it matters.

 

Did anyone ever get instructions to give benedryl or anything else ahead of time? I think Dr K gave DS some the morning he checked in for his first ivig, but don't recall if he told us to do anything before - except hydate, hydrate, hydrate.

[peglem]

We use ibuprofen before. Benedryl is not a good med for my child so we don't use it.

[EAMom]

Yup...you can give Benedryl beforehand.

 

Let us know how it goes!

[SarahJane]

K gives Benadryl & Tylenol. Not sure why the Tylenol vs ibuprofen...that's just what they give.

 

Will be thinking of y'all.

[amyjoy]

I think if he uses the full 50mg of benedryl it should have quite a sedating effect.

 

Maybe you can give it before you leave the house and give it a chance to kick in.

 

Otherwise, a little bit of valium could be in order, although it seems like a strong medication, its not that big of a deal with just a bit when used correctly, like, possibly now.

 

GOOD LUCK with, i'd really like to hear how it goes and what their process is like.

Love amy

[norcalmom]

Thanks all!!!

 

Finally got psychiatrist on the phone yesterday. She rx'd him a very low does of clonazepan, which he can take one or two of. We tried it out on him today after telling him he was going in for ivig (belive me, I thought I giving it to him before telling him - 30 minutes of raging and crying -at one point he went out an was pacing the garage and thought he might pick up a baseball bat and hit one of the cars!) once he calmed down a bit I asked if he wanted to try it.

Seemed to work well. It was a .5mg does, and he really only needs it to work for a couple hours...to get him through the car ride and getting the needle in.

 

I'm going to give him the option to take it in the morning (and I'm pretty sure he will want to do it) some of this needle anxiety seems to come from lack of control over his physical condition, and his medical treatment (and for anyone that has any autoimmune issues, it is extremely anxiety producing to have your body turn on you) so when I spoke with pych. she said to try to give him as much control as possible - which arm they stick, choosing some kind of "reward" when its done, what to pack in his bag for the day...what ever we can, and that seems to be helping too. This afternoon he told me he's scared but he's going to be brave...he's also selecting a "reward" for himself he knows he would never have gotten. He know's how to work it.

 

I'm relived already. I was more afraid to tell him we would be doing another, than actually doing one. And sometime the kids get on my computer and I was afraid that he would see an email that mentioned it, or that someone would let something slip (had to tell his baseball coach and a couple of the parents that will be helping with my daughter for next couple days) ..Husband left for Brazil today...great timing huh? I told DS while he was out running, and decided not to have Dad there - since DS and I are closer and I figure we are the ones who are in this together, and DS has harder time opeing up with hubby...well when DH returned and heard the crying coming formt he garage and tried to skink off, I said "I think you might want to consider sitting out there (in garage). I would if my car was new and his baseball bats were on that side of the garage."

 

She did say that the benedryl could also be a little helpful, but in his case, probably wouldn't be enough.

[EAMom]

hey norcalmom! how did it go?

[norcalmom]

So far so good. This is like the Ritz of medical care..a very California version of the Ritz...spent a hour and a half talking to the child services assistant ( on staff psychologist).. I was thinking, just stick him already... But it worked out fine. Probably should have given 2 of the Clonazepam, his blood pressure was pretty high until the IV placement was done . It was a long day yesterday.

My only complaint is that doctor orders take so long...since they phone all orders back and forth, even the benedryl and Tylenol.

I'm pretty sure insurance covering...the hospital told me they didn't even need protect approval.

We have different insurance now, and no longer self employed. Don't know how immunologist wrote it up.

The biggest mistake was telling DS he could get a half pipe for the yard for skate boarding ( reward/bribe/mommy guilt reducer)(psychiatrist also suggested a "really big reward to help him get through his anxiety)...I mistakenly thought it would be two quarter pipes put together. The size and the price are exponentially larger!

 

We stayed with gammaguard.. Thought about switching it to Gammunex(sp) but felt like my stress levels were high enough, and didn't want to introduce another thing that was outside the staffs normal routine.