PANDAS: What is IVIG like?

[pmoreno]

Hello,

 

My dd will be receiving the IVIG treatment soon...for parent who have btdt, what is the actual treatment like? I know my dd will need a sedative, she is 74 pounds and absolutely fights all medical tests/interventions...even getting her to walk into the hospital will be an impossibility without sedatives...I hope that they can find one that works. How long is the actual treatment itself? Does it hurt or make her feel funny in any way? Thanks for the help in advance!

 

Hello Indigo,

My daughter had IVIG this past weekedn with Dr. K in Chicago. He was very knowledgeable. It made her quite sick after the second day, which we expected (having talked to a couple of other parents who have gone through it) The infusions themselves were no big deal. But after the second day (around midnight) she woke up with a tremendous headache, vomited about 6 times over 5 hours and had a fever. The next day she just mentioned a little headache once in a while - no more nausea. Very important to hydrate ahead of time & push a lot of fluids before they start vomiting.

 

As far as diagnostic codes go, he did give us a couple. One was for encephalopathy, I believe. I have submitted info to our insurance, but I'm not holding my breath. Pat

[EAMom]

EAmom....is that similar to clarithromycin?

 

I believe Azithromycin and Clarithromycin are similar, both macrolides. Not sure of differences, esp, re immunomodulating effects.

[ratlenhum]

My son takes it like a champ but he's used to IVs. He gets weekly chelation IVs.

 

The diagnosis code for PANDAS is 279.8 but it won't get you covered by insurance. Your doctor may need to find something else with he immune system that he can diagnose or he needs to be creative with his codes if he's willing, otherwise you pay out of pocket, like we do. And it HURTS us more every month than it hurts my son

 

My son threw up twice after IVIG and both times it was on the 3rd day after his first IVIG. No problems since

[Worried_Dad]

Hi, Indigo:

 

Our son (12) had IVIG with Dr. K in Chicago last Friday and Saturday (same time as pmoreno's daughter!). It went pretty smoothly for him. Took about 7 hours each day, including prep time and dextrose hydration before / after. He complained of nausea both evenings after IVIG, and a mild headache, but he never actually threw up. (Didn't sleep well, though, and couldn't eat much either morning afterward.)

 

Dr. K and the staff at Oakbrook Surgical Center really have this down to a science. I think they make the kids as comfortable as they can and minimize the stress to the extent possible. They're pretty sensitive to the unique aspects of dealing with PANDAS children who are in a "waxing phase."

 

We're just keeping our fingers crossed and praying now. We've seen incremental improvement in the OCD, but it's only been a few days. Dr. K warned us that it can take several weeks for kids to fully "convert," especially the older kids like our son.

 

We'll post updates as things progess. Good luck, Indigo!

[lss]

Hi New to this forum,

Wondering about Dr. K. Can you give me any info.

Linda

 

Is it the high dose IVIG? Which doctor did you use? Dr. K told us that generally it just needs to be done once (for 2 days) - very rarely does it need to be repeated.

 

Pat

Wow Blake, my sons fever was at the end of Jan 07..around the same time and we are still dealing with symptoms too!

He did a good job of describing the IVIG..They give my son benedryl and it wipes him out..I'm very lucky..my son loves going into the hosp. and picking out videos and laying there being pampered by the nurses. He was nver sick after ward..my friend's son had 2 day IVIG and was very sick for a day after..flu like symptoms but then was fine.

We have had 3 and I wish it was the magic cure but so far no and we are doing HBOT. I would like to possibly do one more IVIG after the HBOT...Sarah

[lss]

Worried Dad,

 

Can you tell me more about this Dr. K? Do you live in the area or did you have to fly up to Chigaco and if so, how long before having the IVIG did you have to see this Doctor. I have a 9 year old son with PANDAS and am looking for a doctor to help. From all the info that I have researched IVIG looks to be the answer to all our prayers. Please keep me posted on how your son is doing. My prayers are with you.

Linda

 

Hi, Indigo:

 

Our son (12) had IVIG with Dr. K in Chicago last Friday and Saturday (same time as pmoreno's daughter!). It went pretty smoothly for him. Took about 7 hours each day, including prep time and dextrose hydration before / after. He complained of nausea both evenings after IVIG, and a mild headache, but he never actually threw up. (Didn't sleep well, though, and couldn't eat much either morning afterward.)

 

Dr. K and the staff at Oakbrook Surgical Center really have this down to a science. I think they make the kids as comfortable as they can and minimize the stress to the extent possible. They're pretty sensitive to the unique aspects of dealing with PANDAS children who are in a "waxing phase."

 

We're just keeping our fingers crossed and praying now. We've seen incremental improvement in the OCD, but it's only been a few days. Dr. K warned us that it can take several weeks for kids to fully "convert," especially the older kids like our son.

 

We'll post updates as things progess. Good luck, Indigo!

[P_Mom]

Linda,

Hi..I see you are looking for info. on dr.K. We have seen him...he is great! He can help your PANDAS son. Just go to his website..all the info. is on there. You can contact him via e-mail or phone.

 

http://www.webpediatrics.com

 

 

Kelly

[Indigo]

We see a doctor in PA but I have to say I was so impressed that Dr. K will email you back personally and very fast with answers! What a great doc to do that!

[bobbynangie]

Wanting to know if one's child has had plasmapharesis then had to have IVIG later? My son had pharesis in june 2012, got alot better following it then doc changed antibiotics because my son was complaining of stomach upset, was on augmentin changed to clindamycin and added azithromycin, seemed to get worse gradually. He also has been on vitamin D 50,000 units once a week now for 8 months. He went from a 6 to 11.5 now. Also in last 2 blood works has a mycoplasma infection. OCD has gotten really bad last couple of weeks. Called doc and she says looking at IVIG now. We are 8 1/2 hours away from her.

Anyone have any thoughts on this?

[T_Mom]

Wanting to know if one's child has had plasmapharesis then had to have IVIG later? My son had pharesis in june 2012, got alot better following it then doc changed antibiotics because my son was complaining of stomach upset, was on augmentin changed to clindamycin and added azithromycin, seemed to get worse gradually. He also has been on vitamin D 50,000 units once a week now for 8 months. He went from a 6 to 11.5 now. Also in last 2 blood works has a mycoplasma infection. OCD has gotten really bad last couple of weeks. Called doc and she says looking at IVIG now. We are 8 1/2 hours away from her.

Anyone have any thoughts on this?

 

 

Our oldest had pheresis and then an IVIG a few months later. It seemed to help overall.

 

Just reading your note above I guess I wonder if you shouldn't try Augmentin again? -- since it seemed to work before?

Are you fairly certain the stomach upset was because of the Augmentin previously? -- or could it have been due to taking it on an empty stomach?

 

If a mycoplasma infection showed up is that being treated now effectively? Have you retested to see if it is still active?

 

I understand your desperation to try to treat -- totally, and I wish you the best of luck (and grace) for healing. I assume you have had every conceivable blood test done to rule out all other possible infections?