Our update and questions for those who have done IVIG

[Debbie1]

Hi everyone. Its been a while since I posted so I will give a brief recap for those who are unfamiliar with our story and a quick update:

 

We have two children with textbook cases of PANDAS:

 

dd12 had a positive response to steroids and antibiotics and was 100% symptom free for many months until multiple strep exposures last summer. A second round of steroids in October 2009 was less effective although the dosing was different than round 1 of steroids, and we tried augmentin and zithromax with minimal improvement. We eventually took her to an immunologist, and she tested positive for lyme (recent infection). We did t&a surgery in December and switched her antibiotic to Omnicef in the beginning of February. Since the recent antibiotic change, she has been doing very well. She is not symptom free, but symptoms are minimal. She did have a bit of an uptick in symptoms in the last 24 hours, and this morning my PANDAS son tested positive for strep.

 

ds8 had a positive response to antibiotics alone and was doing great until a strep exposure in August 2009 caused his symptoms to flare a bit. We switched antibiotics to augmentin with some but not full improvement, followed by zithromax, and back to augmentin. He had t&a surgery in December, but has had some residual OCD that had not gone away and has increased a bit lately. We retested his titers and they have doubled since the surgery. We recently tried a steroid burst and we saw significant improvement immediately. However, as soon as we stopped the steroid, symptoms returned. During the steroid burst he got a stomach virus and he has had stomach aches for the last month probably due to the prednisone, virus and augmentin combination. Because of the stomach aches, the doctor told us to stop all antibiotics one week ago until he feels better, then switch to Omnicef. Of course strep is going around his classroom and he tested positive on a rapid this morning. The good news is that his symptoms have not worsened at all, probably due to the immunosuppressive effects of the prednisone. We are watching him closely.

 

While the kids are doing relatively well, they are being managed, but not cured. We continue to experience bouts of ups and downs. Neither is 100% symptom free and we are considering IVIG. So for those of you who have done IVIG:

 

1) At what point did you decide to go ahead with the procedure?

2) Does a child need to be in the middle of a crisis to warrant IVIG or is it enough that they have residual symptoms and periods of ups and downs?

3) Was your improvement post-IVIG immediate, or did it take some time?

4) How long do you plan to keep your child on antibiotics after IVIG?

 

As always, thank you to everyone for all of the guidance and support.

 

Debbie

[mom md]

We decided to go to IVIG after we had a bad exacerbation post-PEX. His titers were way up and I realized we needed to "retrain" his t-cells. You do not need to be in a exacerbation to do it. We were doing well when we did it. The first week after IVIG was very interesting. Symptoms were coming out each day. After a week he settled down and then 5 weeks out we say a three day return of mild symptoms. It is a sawtooth type recovery, not immediate. We plan to keep him on antibiotics until he is an adult.

[Debbie1]

mom md,

 

Thanks for the reply. I just want to clarify - do you plan on keeping him on full strength antibiotics until he is an adult or are you using a prophylactic dose?

[sf_mom]

1) At what point did you decide to go ahead with the procedure? We were pursuing IVIG as soon as we realized it was PANDAS. His first treatment was 12 weeks post sudden on-set but realized he was sick for almost 1 1/2 years prior explosion of TICS. Strong connection to RF and Kawasaki's in our case history.

 

2) Does a child need to be in the middle of a crisis to warrant IVIG or is it enough that they have residual symptoms and periods of ups and downs? No your child does not have to be crisis to be treated with IVIG. The hope is lasting recovery with treatment.

 

3) Was your improvement post-IVIG immediate, or did it take some time? Its taken time. We have done 3 IVIGs (1.5 m.g/per kilogram) that were 8 weeks apart (not planned in advance) via Dr. K. Our son is much, much better... No ocd, some occasional mood liability that is manageable and one TIC 'blowing air through his nose like he is trying to clear it'. Most mornings he does not TIC at all... when he is tired or been exposed to strep we see 'flairs' of the current TIC. He has been exposed to strep 4 times this month from school environment.... we notice a 48 hour response and then he recovers. We are hoping the remaining symptoms resolve over the next six months of healing. With his current level of symptoms we do not plan to retreat.

 

4) How long do you plan to keep your child on antibiotics after IVIG? Until PANDAS is a distant memory. We hope to lower the antibiotic as we move forward and are working with a nutritionist to repair the gut flora so he can handle ingested bacteria in the future. We are currently supporting his system with the following while tracking his PH balances: High dose probiotics (good bacteria to repair gut), Bentonite Clay (remove toxins thrown off by bacterias), High dose B12 (nerve damage), Fish Oil (anti-viral, anti-inflammatory).

 

Hope that helps. Wendy

[mom md]

We are on 250mg azith each day. He weighs 75lbs. We meet with the infectious disease doctor in May. I spoke to her recently and she said she felt azith was very benign to take every day (she did have concerns regarding augmentin...she suggested I leave that one in my back pocket if he gets strep) and said a lot of cystic fibrosis kids take it regularly for the immune modulatory effect. At some point I may want to switch to the rheumatic protocol which may be a better way to protect against strep.

mom md,

 

Thanks for the reply. I just want to clarify - do you plan on keeping him on full strength antibiotics until he is an adult or are you using a prophylactic dose?

[Debbie1]

Thanks for the reply, Wendy, it was helpful.

 

A follow up question for everyone:

 

Following IVIG, will PANDAS symptoms continue to mildly flair when the kids are around strep or is that reaction expected to go away completely?

[tpotter]

Debbie,

 

These are all really good questions, and need to be discussed with your doctor. First of all, there are 2 options for tx (after abx) that are being used, and there are reasons for each: PEX (plasma exchange/plasmpharesis) and IVIG. One of my children had IVIG, and then 2 months later, had PEX. He is getting ready to have PEX again. My other son only had PEX. They are both continuing to get abx, and their doctor has said that it will be probably until at least early adulthood (incidentally, that is a similar protocol for Rheumatic Fever, which is caused by the same bacteria.) The research is showing that PEX is more effective than IVIG, but honestly, it depends on the child. Many parents are finding that the children who are responding best to IVIG are those who have primary immunodeficiency (low or borderline IgG levels.) You might want to have your children tested by an immunologist. IVIG helps the immune system fight off illness, while PEX takes out the toxins. They sometimes have to be repeated, and really depend on the symptomology of the child, as well as how serious a case the child has, how long they've had it, etc.

 

For my children, they both continued to have symptoms after tx. In fact, after the PEX, his tics became horrendous, and we had to take him to the ER, because he couldn't breathe (they didn't have a clue as to what to do, but at least the ambulance gave him oxygen, which I think is what really helped him in the end.) His doctor assured me it would take some time, but would pass. It was the hardest wait, but it did finally pass. My older son (we don't know specifically when he got sick...his symptoms are quite different), still has his OCD, and math problems and mood changes are coming back. He is still being treated with abx, and has started a different medication, as well, in case the problem is also something completely different. I am getting his tested again, though, through Dr. Cunningham, because it was her test that figured out his symptoms were not just psychiatric, but also PANDAS. This should help his dr. decide how to proceed.

 

But, realize, that it is critical that you speak with your children's doctor, and be open to their recommendations.

[trggirl]

tpotter, did the doctor offer a reason why the tics got worse after the PEX?

[Buster]

1) At what point did you decide to go ahead with the procedure?

We had three main things that caused us to go ahead:

1. Our child's baseline symptoms (i.e., during the time between exacerbations) was getting worse. When plotting symptoms over the 18m period, her baseline symptoms were not remitting
   
2. The anorexia nervosa and restrictive eating symptom returned
   
3. A prednisone burst had full remission of symptoms for 4 days
   

2) Does a child need to be in the middle of a crisis to warrant IVIG or is it enough that they have residual symptoms and periods of ups and downs?

I guess it depends on the severity of the residual symptoms. IVIG is a blood product with the risks associated with blood products. You really do have to weigh benefits. In our case the symptoms were severe enough we felt it was the right thing to do.

3) Was your improvement post-IVIG immediate, or did it take some time?

Improvement occured at 14 days post IVIG. The first 2 weeks were substantially worse with a significant exacerbation. It was on the 14th day that symptoms remitted with a dramatic improvement in mood for another 20 weeks.

4) How long do you plan to keep your child on antibiotics after IVIG?

We will likely keep her on prophylactic antibiotic for a long time. It is our belief that the potential for the condition remains in her system but that IVIG closed the blood brain barrier and suppressed the antibody. We think that she might be re-exposed to strep and get a similar antibody response and with sufficient inflammation, the BBB might open. While antibiotics do not prevent GABHS infections, they do help the body fight off the infection and as such we hope her antibody levels will not be elevated. We discuss this regularly but want a period of sustained remission before changing meds or adding another variable.