Our update

[lmkmip67]

Hi Lisa- Your post breaks my heart. I know how difficult dealing with pandas (ocd) is.

 

I am just throwing some ideas at you here:

 

We have never had IVIG. I know some that see Dr B and have had multiple IVIG's with great success, and others with not as much success. I find it personally surprising that he continues with IVIG in the face of a lack of obvious improvement. I am sure he has his own theories. But, I do know that Dr K (and Dr Swedo at the NIH) are not necessarily in favor of multiple IVIG's. They believe in one high dose IVIG, and then time for healing- only giving a second after a long period of time, or with a new exacerbation. Surely- all docs are hypothesizing at this point, but I guess what I am saying is maybe you should try a different doc.

 

If I were in your place (has there been NO improvement at all, ever?) I might stop everything for a few weeks. See what your real baseline is, and then start adding from there. Maybe some of the meds/ supplements he is on is causing some issues. Maybe the multiple ivig's were stirring up the immune system too much.

 

The only things that have truly helped my kids are immune modulating treatments: steroids and pex. We have not done IVIG- so I cannot comment on that. I do know a doc local to me that has prescribed one 5 day steroid burst per month, for a year, for a pandas child- and this is working miracles. The other thought I have had recently is what about a prescription anti inflammatory (like for JRA). I think it would be helpful for you to find a doc that could really think out of the box.

 

The other thing is- if ocd (and even adhd) is a big problem, you might want to consider an intensive therapy program (like USF). I think for so many kids this could be a huge part of healing. Helped us SO much!!!

 

Thank you! A lot of what you say makes sense to me. The ONLY improvement has been the tics stopping, but that happened RIGHT as we started antibiotics. HE has had break through tics on occasion, but he has also been on an antibiotic for two straight years. As far as the IVIG, nope, we have not seen ANY improvement with it. I have charged, numbering daily, each behavior issue broken down into compulsions, obsessions etc. there has been no change. The prozac has helped that the most. That was started just before his 2nd to last IVIG, so I am sure it was the prozac, not the IVIG as he had already had 6 HD IVIGS before that......with no impact at all. He is in great therapy right now with an awesome therapist and is making great headway with the OCD. We are working on some behavior modification now for the ADHD type symptoms as well. I also am thinking of an intensive program for him down the road, maybe next year, if we don't see enough gains with the weekly therapy. She is quite intense though, and he is well with it. There is a program in Minnesota we could do and stay with friends. So that is certainly on my list. i am also agree with stopping a lot of this and seeing where he is. we are going away next weekend, but I think after that I am going to stop the antibiotics totally for two weeks and see what pops up. If tics come back, we will journal it.

 

I am also going to ask Dr. B about all of these things mentioned here in this thread and see what his reaction is. maybe it is time to at least check with another doctor. He is pretty thorough, but i know all Pandas doctors have different ideas since this is still so unregulated.

[LNN]

Lisa - you've been given some really wise advise here and I think your plan makes a lot of sense. I personally relate to the approach taken by many LLMDs - looking at a whole range of issues - beyond lyme. So if you do find yourself considering another doctor, I think you might like working with an LLMD even if Lyme isn't your smoking gun. But whether it's a new doctor or Dr B at your next visit, one series of labs I found helpful was Shoemaker's list of bloodwork to check inflammation markers. http://www.survivingmold.com/diagnosis/lab-tests

 

Shoemaker's focus is on mold. But these labs show how the body is handling inflammation. It doesn't necessarily mean you have to gut your house and spend your last penny on mold remediation. Especially if you find only some markers are high and not others. What it would give you is another way to look at a medical picture. If you found that your son had elevated markers, you'd know there was a medical/inflammatory trigger rather than OCD/ADHD caused by some other factor(s). Mold was a small contributing factor in my house but not a major one. But the labs helped us understand what things might help control symptoms.

 

I'm so sorry you're still in this place. But I'm really glad to hear that you're finding things that are helping -that's what matters most. I especially love hearing ERP successes. I hope his progress continues and I continue to keep you guys in my thoughts.

[nicklemama]

I would recommend seeing a biomed/alternative med doctor, doing the testing and see what pops up. We did that back in Mar with DS. He is not methylating properly, has a food yeast sensitivity, has some vitamins/minerals totally out of whack. Found out he is compound heterozygous MTHFR. He was tested by a allergist and found out he has some significant allergies and is now on Claritin. Doing supplements, B12 shots and going forward. Have seen further progress but it does not stop flare ups from exposure.

[Fixit]

Sorry to hear you are feeling not on a healing path – it is truly frustrating to feel you have tried so much and are still not seeing improvements you expect should be there.

 

Also sorry to add to your list but just thought I'd chime in with our experiences – ds had clear strep markers with onset. When we first started seeing integrative MD that we are still with, he had multiple issues in addition to strep – lyme (althoughI feel that was in the background – definitely added to the overflow of the bucket but not really a major trouble in and of itself), parasites and multiple viruses. I feel viruses were a HUGE issue for us.

 

My ds does have hyper tendencies and difficulty focusing that is pretty under control when healthy but can fly off the chart when in exacerbation. At his last appt, a parasitic infection (toxoplasma Gondi) was showing back(doc found it odd to be back) and he had been very 'spinning' and constant movement. That has improved with treatment.

 

After 2 years of homeopathic treatments, he was generally looking quite good with infections. However,still not where I thought he should be. We went on to investigate KPU and zinc/copper issues. I have long known he has a 'copperpersonality'. He tests negative with KPU (surprising to everyone and will warrant further investigation in the future) but has low normal zinc and normal copper – which leads to an inappropriate copper/zinc ratio. We've just recently gotten to full dose supplementation after a very slow build up of 2 months but I do think I see improvement. Needs more time so the jury is still out if this is our magic last bullet.

 

I don't really understand the over/under methylation issues(ds tests without a problem) but I am reading William Walsh's book and he believes it to be a very big issue with brain function.

 

Just MHO – and due to our experience - when you say "I'm not sure it's pandas anymore b/c have tried everything and gotten nowhere" – I think some can have one or multiple "pandas treatments" and have good results (disclaimer that we have not had IVIG or PEX or even long term abx) and then there are those that are tougher cases that maybe have multiple issues or the infections have created other issues in thebody – like infection induced imbalances, or one infection has opened up the body to more or imbalances that may no longer respond to abx or treatments and need another approach.

 

I know it is extremely frustrating to keep chasing new thoughts and peeling yet another layer of the onion – I just don't know that for us, I see much promise in the other options - so I keep looking for things that make sense to me. I mean for our particular situation -- i definitely think for some, psych meds are helpful and i support people using them if they find them helpful.

 

When ds first got sick, we had a food allergy panel that had severe igg reaction to over 15 foods. We went GF/DF. He had exacerbations and good times while following that diet strictly. After a while, we relaxed it and saw no differences. Since this summer, he has not been on it at all. I absolutely believe for some, it is a help. For us, I think it was helpful at his sickest time b/c it was a lightening while his system was in such a state of disarray and thus a help in that manner but I don't think it was a major factor of itself in his healing.

 

Does Dr.B do anything with viruses, KPU, zinc or copper?

 

I wish you much hope in finding something to bring you success and peace!

 

I agree completey!!!!

Well said.

We have been doing more gut modality/dibiosis/methylization/inflammation protocal.

It's not just gf/cf that needs to be considered.

Along with viral/infection load.

Alot of inprovment in a few weeks. But things were bad, and i am being pretty hard core.

[Christianmom]

one series of labs I found helpful was Shoemaker's list of bloodwork to check inflammation markers. http://www.survivingmold.com/diagnosis/lab-tests

 

It was the "Shoemaker mold panel" that LLM is suggesting here (especially the TGF-B1 and c3a/c4a) that pointed us in the direction of lyme. Interestingly, my son does not have mold illness. We also found that my son had parasites through the Metametrix complete stool profile (covered as an out-of-network lab) and my son tested very high for KPU (another clue that had us start looking at lyme). I would also run a CD-57 test as further testing for lyme. My son tested negative in both CDC and Igenex lyme/co-infection testing though he has lyme, bartonella, and babesia.

 

Dr. T ordered these tests for me, though, unfortunately, he was not familiar with them (at the time anyway), so I had to bring the list of tests to him which required some work on my part. He did say he thought Dr. Shoemaker was a genius and was very supportive of the testing. The tests need to be run at certain labs (Labcorp, Quest, Jewish Health), so be sure they are sent to the right lab. Also, be sure the tests are run correctly. The C3a/c4a and TGF-B1 have special instructions. Insurance should pay for everything except the C3a/c4a (must be run through Jewish Health; I think about $100), and the KPU (mine was done through Vitamin Diagnostics, about $60).

[dcmom]

Lisa,

 

what are his current symptoms?

 

If it is mostly ocd, I would urge you to consider USF asap.

 

My daughter had an exacerbation almost two years ago. We immediately did IV steroids, and this stopped the exacerbation (depression, overwhelming anxiety, not sleeping, separation anxiety, odd, etc), but the ocd hung on. I could tell she was well: she was well physically, and her personality was so much back- but she was crippled with one or two ocd issues that kept her fairly housebound and out of school. We tried local therapy for 6 mos. After not getting anywhere, we went to usf. After 3 weeks there (totally budget friendly- pm me for info) she was literally over the ocd and 100%. In addition I learned SO much about ocd and its therapy. The only regret is that we waited 6 mos.

[lmkmip67]

His symptoms are some OCD, ODD, inattention and hyperactivity, anxiety, tics on occasion (I thought they were under control but I heard a couple crop up today). That is about it. The prozac is helping the OCD, his main issues right now are attitude, inability focus, hyperactivity and the occasional tic. The OCD is still there, but he is doing much better since our new therapist this summer. I tell her I want her to move in. lol

[JuliaFaith]

Hi - just throwing it out there as a possibility but for our ds (we also have dd who is PANDAS) we had luck with either yeast meds o,r GMO free - did both sa the same time so doing sepeartely now to test what worked for him. Also we had our first 2 full weeks of 100% baseline for our dd when we were out of the country with much lower or negligible GMOs in diet. We are sort of avoiding them but not strictly. We intend to do diflucan for ds again, give a couple of weeks and then try fully GMO free - no easy thing to do as they're everywhere and not labelled.

 

 

I've seen some drs (and 1 other PANDAS parent) reporting improvement in all sorts of neuro and other chronic disorders when off GMOS. I think the real issue if GMOs are at play would be GMO corn (Btcorn) at a guess, as it persists in blood etc and other GM genes have been shown to transfer to animal gut flora, the idea being you could potentially turn your own gut into a mini pesticide factory and the Bt gene is used in corn as it pokes holes in insects guts.

 

Dunno just an idea... a hard hit in terms of compliance but possibly something to try before you add more meds?

 

Good luck, hope you can get some relief...

So glad to hear about your daughter! Good news!

 

Just one question, is it true that organic does not mean GMO free?

Edited October 18, 2012 by JuliaFaith

[dut]

Hello JuliaFaith- (the 2 weeks was a year ago, unfortunately, but we're still doing very well just not 100%) as to GMO I think it depends on who is doing the certification. I'm reading that USDA organic while only needs to be 80 or 90% organic (can't remember), it should be 100% GMO free minus the 0.9% that they have to allow cos supposedly you can't get round some contamination via trucks, storage, cross pollination etc. However even USDA is now allowing GMO DHA and there are more on the books up for discussion by USDA.

 

GMO Project certified is a good certifying 3rd party but as to others like Oregon Tilth, I'm not sure. I'd e-mail them. I've mailed a number of cos and asked saying that our dr has recommended GMO free - I suspect makes them less likely to lie or bluster/make sure of what they are saying. I've had staff in local natural markets categorically tell me they carry NO GMOs but it's not true - mistake not malice I suspect.

 

GMO is hard especially eating out.. virtually impossible eating out... and being a lazy mom in the kitchen it comes extra hard Saw Dr Mack again today and she;s very nice. dd likes her a lot. You seeing any improvement with her?

 

Take care

Edited October 19, 2012 by dut