Why are Pandas doctors doing multiple IVIG's?

[PhillyPA]

Does anyone know why the pandas doctor's have begun to do multiple ivig's? Is there any research that says this works? Any one out there have a bunch of ivig's and their child got well? My son had three high dose(2gr) this summer. Now he is scheduled for ivig 6 weeks apart for 6 months (which come out to 4).

 

My son has been very ill for 2.5 years before a diagnosis. He got sick when he was five years old and he is now eight. I know that his doctor is desperate to make him well. She is trying to save his life. I am just not really sure that that is going to happen.

 

And so I don't explode with all of the stress - he has been tested for Lyme disease, by specialists(Fallon is one of them), multiple times. Please have mercy on me Lyme advocates. I can't take it right now. I just want to know about multiple ivig's. Do they work and is there any research on it? Have there been any desperately ill children with pandas who get well with multiple ivig's?

Edited January 10, 2011 by PhillyPA

[kimballot]

HI Philly- I understand your angst about multiple IVIGs and I am so sorry that your son is not doing well. I think the multiple IVIGs come from a couple of sources, one being that multiple IVIGs are standard treatment for kids with immune deficiencies, and one being that multiple IVIGs (like monthly IVIG) are used for people with multiple sclerosis, which is also an autoimmune neurological disorder (http://ms.about.com/od/treatments/a/Intravenous-Immunoglobulin-Ivig-For-Multiple-Sclerosis.htm)

 

IVIG protocol for PANDAS is not well established nor is it well established for MS. I don't know of any chronic conditions for which one IVIG is considered a "cure". I can imagine that with a first or second time exacerbation, one IVIG might be enough to put a child in remission... but I suspect many of our children go on to need more.

 

It is my understanding that immunologists believe that it takes multiple IVIGs at regular intervals to reset the system.

 

Some things you might want to consider are: Are you seeing benefit after IVIG that is not lasting? Is IVIG not changing things? Is IVIG making things worse?

 

I am assuming that you all have looked and looked and looked for underlying infection, inflammation, and allergy. I don't know who is doing your IVIG, but if you are not getting results you may want to try another doc for a different opinion or you may want to try an infectious disease doctor too.

 

If you are looking for someone who was dramatically helped with multiple IVIGs, then read the posts from Lauren Johnson's Mom. Lauren had her first IVIG last February or March, which stopped her sneezing tics, and now she receives IVIG regularly (I believe it is every 6-8 weeks). They do see some mild return of symptoms just before IVIG, which is why they are continuing.

 

Best wishes to you and I do hope to read posts about your child's improvement in the near future!!

Edited January 10, 2011 by kimballot

[tpotter]

PMing you.

[JAG10]

You could reach out to nevergiveup and coco who do multiple/regular ivig for their kids with success, but aren't on here much anymore.

 

Melanie and peglem too. I'm sure there are many others.

[peglem]

We just did #12 of every 4 weeks. Allie has immune deficiency. No cure, but slow improvement. I have to say that I'm not sure what 100% better looks like. Allie has had this since a very young age and her development has been messed up since early childhood. But, just recently, we've had to drop/reduce medications that were treating symptoms because they were causing side effects (they hadn't before). She's getting better and we have set backs with exposure.

[Joan Pandas Mom]

My son had his 3rd IVIG 5 1/2 weeks ago. We had our first mid May. We are not seeing results, but we just discovered his brother has strep pneumonia and probably has had it since Sept. or longer. This might be playing a part in lack of recovery. My son has also had PANDAS for a long, long time. Until Oct of last year it was untreated PANDAS with numerous exacerbations. I'm still at a wait and see stage on the IVIG. Worried Dad's son had 3 IVIG's. His son didn't get better until the high dose Augmentin, but I think he wrote too that he wasn't sure if the IVIG's set the stage for recovery. I don't know if I'm going to do another one yet. I feel that they might work, but they take a long, long, long time.

[PhillyPA]

We saw infectious disease at CHOP. That was a pretty pointless visit. They said he was fine. The only thing left to do was a brain biopsy which they did not recommend.

 

We do see improvement that lasts from the ivig. Things that have went away and never came back. His OCD has softened greatly. Everytime we get an ivig we have peace in the house for a while. On 12 weeks mark from his last ivig in August (mid November) he started to collapse. It coincided with his brother getting bacterial pneumonia. His pediatrician, after talking to the radiologist, said that he thought it was mycoplasma. The collapse continued.

 

I am just not sure that there is a "cure" or "remission" for long term patients. I guess I am expecting miracles. However, I am told that I should not expect recovery so soon when treatment with ivig just started in May. It is just disheartening. I wish I would hear on this forum that a child did many ivig's and they are back to themselves but I am not. Perhaps they have left the forum or are not on the forum or perhaps they don't exist. Johnson's daughter was caught relatively quickly. One ivig seemed to do the trick for her biggest problem (sneezing). When I saw her interview, the child seemed to be in pretty good shape. My child could never do an interview.

[melanie]

Hi

 

I could go on and on about this for hours ,We have done 16 IVs and have had way more ups then downs.Our Dr Believes this is the best protocol for danny and his issues.I see Dr J at UMDNJ in Newark ,NJ .Itrust her and have seen tremendous gains with danny.He has had symptoms since hes been about 2.Hes 16 now so you can see the amount of time he was untreated so that could be why.He is dxed with CIVD and PANDAS from 4 Mds so we know that this is what he has.He is also on the Autistic spectrum (somewhere on it )You really need to find and trust a MD .Pm me if you have any questions.

 

Best Wishes Its real hard to deal with this but we really dont have a choice

 

Melanie