IVIG procedure

[BriCanady]

I posted a few weeks ago about my son starting with OCD tendencies after the swine flu, and we finally saw a pediatric neurologist in New Orleans , who is fabulous. Dr. Allison Conravey, who believes in Pandas/Pitands. She wasn't that familiar with Pitands, but read all the information I brought her. Which included, blood tests, MRI,EEG , school work and lots of information on Pandas . She immediately suggested IVIG but contacted Children's Hospital in New Orleans for a neuro pysch exam as a baseline first. She called our insurance company and argued my son's case and they approved both procedures.( They did a spinal tap too..)

We started the IVIG at 10:15pm tonight...Friday, the 13th.....LOL

( My son's immunologist and PCP both were in agreement to try IVIG)....

[EAMom]

I posted a few weeks ago about my son starting with OCD tendencies after the swine flu, and we finally saw a pediatric neurologist in New Orleans , who is fabulous. Dr. Allison Conravey, who believes in Pandas/Pitands. She wasn't that familiar with Pitands, but read all the information I brought her. Which included, blood tests, MRI,EEG , school work and lots of information on Pandas . She immediately suggested IVIG but contacted Children's Hospital in New Orleans for a neuro pysch exam as a baseline first. She called our insurance company and argued my son's case and they approved both procedures.( They did a spinal tap too..)

We started the IVIG at 10:15pm tonight...Friday, the 13th.....LOL

( My son's immunologist and PCP both were in agreement to try IVIG)....

 

Wow...they started at 10 pm??

 

What dose are they using? Swedo used 2gm/kg (1gm/kg each day x 2 days). Dr. K uses a slightly lower dose, 1.5 gm/kg (0.75 gm/kg each day x 2 days).

 

Hopefully the plan is also for long term antibiotics as well? That is really important to maintain the gains from IVIG.

 

Did they try any type of steroid burst beforehand?

[sf_mom]

Congratulations on finding the right Dr.s and securing treatment for your son. I concur with EAMom that antibiotics are critical. Our younger son received IVIG treatment ONLY two years ago for Kawasaki's and just found out he is still suffering and his CaM Kinase puts him in mid range PANDAS.

 

-Wendy

[BriCanady]

Congratulations on finding the right Dr.s and securing treatment for your son. I concur with EAMom that antibiotics are critical. Our younger son received IVIG treatment ONLY two years ago for Kawasaki's and just found out he is still suffering and his CaM Kinase puts him in mid range PANDAS.

 

-Wendy

 

 

They plan to follow up with steriods because Jude's original "trigger" was swine flu, which is viral. We tried aug ( 1800mg per day) for 14 days for a sinus infection about three weeks ago and his tics etc. stayed the same.

 

His IVIG treatment is as follows...10 hours per night @ 60ml...for 4 nights...( it took about three hours to "build up" to this amount)

 

Has anyone else had a spinal tap prior to the IVIG ??? I understand the reasoning behind this procedure but my son was freaked out about the whole procedure....

[Buster]

They plan to follow up with steriods because Jude's original "trigger" was swine flu, which is viral. We tried aug ( 1800mg per day) for 14 days for a sinus infection about three weeks ago and his tics etc. stayed the same.

 

His IVIG treatment is as follows...10 hours per night @ 60ml...for 4 nights...( it took about three hours to "build up" to this amount)

 

Has anyone else had a spinal tap prior to the IVIG ??? I understand the reasoning behind this procedure but my son was freaked out about the whole procedure....

 

BriCandy,

 

Wow. No we didn't do a spinal tap before the IVIG. If you do that, you should have your doctor contact Madeleine Cunningham so that they can check for anti-neuronal antibodies in the CSF -- this way you'd show that the antibodies are crossing the blood brain barrier.

 

We think that PANDAS is five separate things:

1. an abnormal B-cell antibody response to GABHS (the triggering event -- but not the showing event)
   
2. a failure of the B-regulatory and T-regulatory cells to inhibit these antibodies (the failure)
   
3. a breach of the blood-brain barrier that allows the antibodies to interfere with neuronal tissue (the showing event)
   
4. even after the original antigen (GABHS) is removed, the antibodies stay present for 4-6 weeks
   
5. the B-cells are memory B-cells and thus exquisitely sensitive to GABHS in the future
   

So it is totally possible that sinus infection 3 week prior was #1 and the H1N1 triggered the breach in #3.

 

In our case, IVIG caused an increase in symptoms immediately following IVIG, but these abated in 14 days -- such that we are now symptom free at 15 weeks post IVIG.

 

Please, please, please get on some form of prophylactic antibiotics -- preferably azithromycin if augmentin didn't have any effect. I'd hate for you to go through all of this and get a re-exposure and be right back where you started. The steroids will help suppress the immune system but that seems a really odd thing to do when you are just doing IVIG -- i.e., strengthening the immune system.

 

Bottom line, please get at least some prophylactic dose so that it's not yet another complicating variable while you look for the effectiveness of IVIG.

 

Best regards,

 

Buster

P.S. Did you have Cunningham tests pre-IVIG?