Treatment Plan Advice

[nojo]

Hello All, I haven't posted in awhile, but we are still dealing with PANDAS, and I need treatment advice. Brief history: DD 11 has been dealing with PANDAS for a number of years. She has low igg levels (CVID), tested positive for lyme in addition to PANDAS. We saw Dr. L, she said because of low immune levels immunologist would be a better fit. We currently see Dr. B. Daughter did a series of 7 hd ivig every 8 weeks for a year. We stopped for 10 months since she was doing well. Last February she got sick, and fought it off. This was definitely different than how she would respond in the past. In the past, she would get really sick and end up in the hospital with asthma type issues. We thought we were clear, but a few weeks after she started with the PANDAS flare. In retrospect, she probably had micoplasm. She had been on antibiotics the whole time, ended up doing steroid burst, and ultimately started ivig again this fall. This time she has completed 3 HD ivig. Currently she is doing well. Lyme is not an issue any longer (nor co-infections). I have a phone consult scheduled this week, and want to have my ducks in a row.

 

IVIG has been very good for her. She had not gained a single pound since stopping ivig, and the first month she gained 5 pounds. I do think IVIG gives her body the chance to heal and not constantly fight infections. She does not have tic's, and her rages and rigid inflexibility are better. The OCD is definitely better. Hoarding better, we have been able to clean her room, she will eat food (and lots of it!). The telltale sign of urinary frequency is gone. Is she 100%, no, but I am not sure how much of inflexibility is her strong will and/or habit. I don't want to stop ivig if it is too soon, but I don't want to continue out of fear. She has seemed to plateau.

 

So my questions: Some do only one HD ivig and say healing can happen for up to a year. Others, like us in the past have done a series of several. Is there any evidence either way? Is it just by Doctor? What is the NIH study doing?

 

I am not anti-ivig, I realize for us IVIG is also beneficial for her low IGG levels. She is definitely low (low 400's) with a normal low range being a minimum of 550-600 for her age. She is definitely getting stronger, she has not had a hospitalization in several years, and has not needed a nebulizer treatment in a year. It is invasive and a difficult trip for our whole family to go to Connecticut, so I don't want to just stay the course without having a plan. I want to make sure that I do what is best for her, whether it is the easiest or not. She is not at 100%, but this might be where therapy could help with habits that have become ingrained. Currently we home school so her germ exposure is limited.

 

Thanks for any insight into this difficult illness.

[PowPow]

I cannot answer to the IVIG question- but I wanted to encourage you with a hearty, passionate voice on this-- if therapy is an option now- DO IT! go to USF if you can there are other children/adolescent intensive programs popping up around the country, I believe. Where do you live?

go tot he OCD foundatino website and find a BTTI trained therapist.

My children have done pex, ivig and everything else- (ok, no DAN doc, but everything besides that!) and once we got to the point you describe, appropriate therapy was the single most important thing to their recovery. We would have not gotten to that point with pex and steroids I am sure- but USF was excellent.

[Dedee]

We did two HD IVIG's and we saw gains for up to one full year. If your daughter is currently doing well I would hold off and see how she does. I have heard that you can actually do harm by continually doing IVIG. I can't remember the exact situation or how frequent it is when this occurs so I'm not saying you have done harm to your daughter, I'm sure you haven't. Just saying that if things are looking up you might want to give a short break and see how things unfold. Watch her levels and so forth.

 

Also, I completely agree with the CBT recommendation. If your daughter is in a good place this is a wonderful opportunity to introduce ERP. No better place around than USF. This would be icing on the cake for you. Best time / money you will ever invest.

 

Dedee

[nojo]

Thanks for the insight, it is so hard to know the right path. We are in Richmond, Virginia, so I will look for therapists around here. I feel like she is about as good as she is going to get right now, on this path, but I want to make sure it is not just my not wanting to pack up to CT for the whole transfusion. It is hard to know too, if some of these quirky things are just habit now, and that is why therapy would be beneficial. For example, she has real issues about emptying the dishwasher. If her sister puts a cup in the wrong spot it is very upsetting to her. This is so minor compared to where we were, she is getting dressed without complaint, she is eating a ton of food (and trying new things), she is not trapped in the bathroom. She is not raging and in danger of harming herself or others.

[JAG10]

Hi Nojo!

 

I remember you

 

We have traveled a similar path with Dr. B (no lyme though.) My dd13 had her first IVIG 5/2010 w/Dr. K and her second with dr. B 2/2011, first every 4 weeks, then every 8 weeks, then 4/2012 we went to 16 weeks with her last one 8/2012. In Dec of 2012, I took both of my girls to see Dr. O'Hara to help us step-down off IVIG altogether and maintain their health. So far, this has been working. They are getting "regular sick" now, not behaviorally sick. They are getting fevers when ill. My dd9 never got to the point where she needed IVIG as we caught her earlier (still years after onset, but not as many years.) My dd13 still has some minor ADD like issues that completely resolve with steroids, but IVIG was not making a difference with. In a few weeks, we are going to try Amantadine for that. She started minocycline a few weeks ago and that has been helping some too. Minocycline is anti-inflammatory, neuro protective and neuro-restorative, but it can cause vestibular issues in girls (luckily, not mine.)

 

Dr. O is very systematic and methodical. One of the things she started with my dd13 was IgG 2000 by Xymogen. She had us stay on Dr. B's IVIG schedule for late Dec., but then since she was doing well, cancel and reschedule for Feb. As long as she holds steady for Feb., we will cancel and not reschedule this time. She wanted her to go 6 months w/o IVIG before pulling her "place in line" at the infusion center. We have not remeasured IgG levels since Dec., so I can't tell you the exact impact of the IgG 2000, but her immune responses lately have been typical sick symptoms. Her IgG levels run about 100-175 below the bottom of the range for her age three months post infusion.

 

http://vitaminde.com/igg-2000-df-120-vegetable-capsules-by-xymogen.aspx

 

Then there is the question of puberty....not sure where your girl is with that. My dd13 began menses 2 months before her 12th birthday. I do think the steroids administered with the IVIG brought it on a little early. It's hard to say if puberty has pushed her body back on the right path or solely the succession of IVIG. Her C3D level in Dec was 8 with a normal range of 2-25 which is great news and her first normal C3D level. My dd9's C3D was 40, but clinically she's doing well, knock on wood.

 

It was difficult for me to let go of the IVIG safety net; it worked well for my girl. But I knew we were at a point where we were only seeing "improvement" from the accompanying steroids. Ironically, the day after I called Dr. B's office to cancel her Dec. IVIG appt., I received a letter in the mail from BCBS denying renewal coverage for the next year of IVIG. For CVID, they said she had to go every 4 weeks at a lower dose, not every 10-16 weeks at a higher dose. God forbid they let physicians practice medicine according to their patients needs and responses. I'm really glad I made that decision on my own before I received that letter, but I also took it as a sign it was time to let go.

 

I know you probably wanted research or a doc's opinion, but I thought I'd shared our anecdote in case it might help. I highly recommend Dr. O and the IgG2000 seems to be doing its job.

 

Sending warm wishes and good vibes your dd's way!

Jill