New to group-need help high dose IVIG

[Healingthedude]

I have a son with severe PANDAS/AUTISM. His Tics and OCD have been gone for 17 months using IVIG. He was doing amazing.

The PANDAS suddenly came back the end of May and the treatments are no longer working.

We went to see a very good immunologist the beginning of Sept and he recommended High dose IVIG. 1.5G/1kg

 

We have been doing the lower dose treatments at our local hospital and my son tolerates it well.

It takes a huge amount of work and preparation to do this treatment with a hyperactive/OCD 10 year old boy with Autism.

We have to have the same hospital room, same nurses, same rewards for putting the IV in etc every time or he will tantrum

and possibly pull the IV out etc. I was hoping the immunologist could go over the specifics of the high dose protocol

with our local Doctor so we could continue to do this where my son is comfortable.

 

The Immunologist refuses to talk to our pediatrician. He says he should already know how to do it.

He just sent a short letter recommending the high dose protocol for my son.

I am so frustrated. He wont discuss the steroids or how to space out the meds over 2 days, etc.

 

I have called my DAN Dr to talk to Dr K in Chicago.

We just want to make sure we are following the right protocol at the hospital to prevent reactions and avoid any undue headaches, nausea etc.

 

Any specific info on the 2 day high dose protocol or help facilitating communication between the Drs would be greatly appreciated.

Where do you guys have your IVIG done. Will your Doctors send orders to your local hospital or do you travel for the treatment?

My son is having upwards of 800 tics a day at school.

I am very stressed by the whole situation and just want to see my son get his treatment and some relief ASAP.

Thanks for your help.

Carolyn

[wornoutmom]

Not sure where you are located, but there are some infusion centers that will actually come to your home. They'll sit with your son, monitor etc while he watches his own tv, plays his own video games etc. PM me if you want more specific info.

[EAMom]

Usually the 1.5gm/kg is given over 2 days...so it's only 0.75gm/kg each day. Usually it takes several (many hours). Our dd has had 2gm/kg 2 separate times. The first time they took out the IV after the 1st day. The second time they wrapped it up and used the same IV cath. (it was on her hand) for day #2.

 

 

Pre-med with Benedryl (and continue for the 2 days of IVIG and a couple of days after).

 

Also, giving alternating doses of Advil and Tylenol is often recommended (start just b-4 IVIG, and continue those 2 days). Also for a coupld of days afterwards, (for fever, headache, flu-like symptoms). Alternatively, some docs rx pred for the side effects (which you can't give with Advil).

 

Also, being well- hydrated is important.

 

Is your son already on full-strength antibiotics? Some of us are of the opinion that it is the combination of long term full-strength antibiotics (often Augmentin or Azith.) and IVIG that yields the best results.

 

Have you seen this helpful threads FAQ? http://www.latitudes.org/forums/index.php?showtopic=6266 Lots of great info. on that thread.

Edited October 1, 2010 by EAMom

[EAMom]

The Immunologist refuses to talk to our pediatrician. He says he should already know how to do it.

He just sent a short letter recommending the high dose protocol for my son.

I am so frustrated. He wont discuss the steroids or how to space out the meds over 2 days, etc.

 

 

That's a bit strange that he would expect a ped to know a protocol for IVIG. Normally, it's the immunologist (or some other sort of specialist) that deals with IVIG.

[Healingthedude]

Usually the 1.5gm/kg is given over 2 days...so it's only 0.75gm/kg each day. Usually it takes several (many hours). Our dd has had 2gm/kg 2 separate times. The first time they took out the IV after the 1st day. The second time they wrapped it up and used the same IV cath. (it was on her hand) for day #2.

 

 

Pre-med with Benedryl (and continue for the 2 days of IVIG and a couple of days after).

 

Also, giving alternating doses of Advil and Tylenol is often recommended (start just b-4 IVIG, and continue those 2 days). Also for a coupld of days afterwards, (for fever, headache, flu-like symptoms). Alternatively, some docs rx pred for the side effects (which you can't give with Advil).

 

Also, being well- hydrated is important.

 

Is your son already on full-strength antibiotics? Some of us are of the opinion that it is the combination of long term full-strength antibiotics (often Augmentin or Azith.) and IVIG that yields the best results.

 

Have you seen this helpful threads FAQ? http://www.latitudes.org/forums/index.php?showtopic=6266 Lots of great info. on that thread.

[Healingthedude]

Usually the 1.5gm/kg is given over 2 days...so it's only 0.75gm/kg each day. Usually it takes several (many hours). Our dd has had 2gm/kg 2 separate times. The first time they took out the IV after the 1st day. The second time they wrapped it up and used the same IV cath. (it was on her hand) for day #2.

 

 

Pre-med with Benedryl (and continue for the 2 days of IVIG and a couple of days after).

 

Also, giving alternating doses of Advil and Tylenol is often recommended (start just b-4 IVIG, and continue those 2 days). Also for a coupld of days afterwards, (for fever, headache, flu-like symptoms). Alternatively, some docs rx pred for the side effects (which you can't give with Advil).

 

Also, being well- hydrated is important.

 

Is your son already on full-strength antibiotics? Some of us are of the opinion that it is the combination of long term full-strength antibiotics (often Augmentin or Azith.) and IVIG that yields the best results.

 

Have you seen this helpful threads FAQ? http://www.latitudes.org/forums/index.php?showtopic=6266 Lots of great info. on that thread.

[peglem]

My daughter gets 1.5g/kg every 28 days, and it used to be really, really tough for her. We now are able to do it all in 1 day (takes only @ 1 hour more than 1 day of the 2 day regimen). The other thing we've done is have an IV port implanted- that has made it way, way less traumatic. Yesterday, she didn't even notice when they accessed her port- her attention was elsewhere. Now, all we have to do is keep her entertained for @ 6 hours!

And, I almost forgot- the Baxter IGI V kit (free on the Baxter website) is a great tool for play. We IV'd every stuffed toy she owns at least once with that before she ever got an infusion. It really helped that she had a chance to get to know the procedure before hand.

[melanie]

We do our infusions at home,1g per kilo every 21 days.Im in NJ and its through wallgreens option care the nurse (who we love) stays the whole time.Danny has ASD too.Hes pretty high functionng so doesnt fight anything.He plans movies and we always go to the movies and dinner after.His IVs were taking 6-7 hours but we are switching to a 4 hr protocol this month.

We did the first IV in a hospital for 3 days I have to say weve done 11 at home and its much much better

 

Melanie

[Healingthedude]

Thanks for all the abpve info. We are hoping to do the high dose staying in the hospital 24 hours

22grams 10am to 2 pm play games watch movies go to bed another 22 grams 2 am to 6 am.

 

I think if I bring my son home he will not be willing to go back the next day for another infusion.

He is used to going once a month, stay overnight and daddy picks us up the next morning.

(He usually has the IV while he is sleeping. easier for us)

 

Hoping 12 hours between the 2 infusions is enough to calm any reactions.

Has anyone else put only 10-12 hours in between versus 24 for high dose?

[momaine]

Thanks for all the abpve info. We are hoping to do the high dose staying in the hospital 24 hours

22grams 10am to 2 pm play games watch movies go to bed another 22 grams 2 am to 6 am.

 

I think if I bring my son home he will not be willing to go back the next day for another infusion.

He is used to going once a month, stay overnight and daddy picks us up the next morning.

(He usually has the IV while he is sleeping. easier for us)

 

Hoping 12 hours between the 2 infusions is enough to calm any reactions.

Has anyone else put only 10-12 hours in between versus 24 for high dose?

I believe our doc said that the slower the infusion, the less chance of side effects. If he is going to be there anyway, can't they slow the drip way down to help prevent side effects?