Our update

[lmkmip67]

A quick history, Pandas diagnosis for my 9 year old two years ago. 8 IVIGS, numerous combos of antibiotics, tested for everything, no co-infections, Igenex Lyme tests, negative twice. we are currently trying yeast next. No improvement yet. So we have been treating the OCD with prozac and have seen some improvement. He is still on Augmentin twice a day, that seems to keep tics away. Other than that, his therapist, a child psychologist, did some evals and just diagnosed him with ADHD. He is so hyper and can not focus at all. So now he is on Prozac, augmentin, difflucan and they want us to try ADHD medication. I am at the end here. We see Dr. B again at the beginning of Dec. But there isn't anything much else to do. School is hard because he can not focus. We are trying some behavior plans at home, we will see how that goes. But yep, at the end of my rope. DH is against more medication, but what do I do? I am not sure it is PANDAS any more, since we have tried everything and gotten nowhere with that. Yet antibiotics keep the tics away. So something is going on, just no idea what and he gets no where near baseline. I didn't want to post here because I don't want to bring others down. I don't want to take away hope for anyone. I guess maybe we just don't know what we are dealing with yet.....My last resort seems to be a local Lyme doctor, but why? The tests results showed negative. So I am not sure what that will get me. Maybe homeopathy next. Now sure. Anwyay, I did want to update. I am at wits end.

 

Lisa

[EAMom]

A quick history, Pandas diagnosis for my 9 year old two years ago. 8 IVIGS, numerous combos of antibiotics, tested for everything, no co-infections, Igenex Lyme tests, negative twice. we are currently trying yeast next. No improvement yet. So we have been treating the OCD with prozac and have seen some improvement. He is still on Augmentin twice a day, that seems to keep tics away. Other than that, his therapist, a child psychologist, did some evals and just diagnosed him with ADHD. He is so hyper and can not focus at all. So now he is on Prozac, augmentin, difflucan and they want us to try ADHD medication. I am at the end here. We see Dr. B again at the beginning of Dec. But there isn't anything much else to do. School is hard because he can not focus. We are trying some behavior plans at home, we will see how that goes. But yep, at the end of my rope. DH is against more medication, but what do I do? I am not sure it is PANDAS any more, since we have tried everything and gotten nowhere with that. Yet antibiotics keep the tics away. So something is going on, just no idea what and he gets no where near baseline. I didn't want to post here because I don't want to bring others down. I don't want to take away hope for anyone. I guess maybe we just don't know what we are dealing with yet.....My last resort seems to be a local Lyme doctor, but why? The tests results showed negative. So I am not sure what that will get me. Maybe homeopathy next. Now sure. Anwyay, I did want to update. I am at wits end.

 

Lisa

 

Well, we just saw a rheumatologist (our dd has had 3 HD IVIG's over the years, and has been on Azith for 4 years). Dd is overall pretty good, probably at 80-90%, but PANDAS is definitely still there. Anyway, to make a long story short, one of the things she recommended was a low allergen diet. She recommended going gluten free/dairy free/soy free (since people may have multiple allergies). She said it may take up to 3mo. to see an improvment. Anyway, something to consider.

Edited October 17, 2012 by EAMom

[lmkmip67]

That has been suggested to us, too. But we have already tried that long ago when all of this first started and I saw nothing. He had a dairy allergy so was off dairy at that point already. Not saying I wouldn't try it again, but I just have a big feeling that it wouldn't fix the huge amount of problems I am still seeing.

[ShaesMom]

Ditto Eamom. Reading your post and the first thing that came to mind were gluten and dairy issues. Enterolab tests for intolerances via stool sampling and doesn't require a dr signature.

[JuliaFaith]

Can really empathize with you. My ds14 will have been thru all kinds of treatment for lyme, co-infections, bacterial, viral, and mold detoxing and still has flu-like symptoms going on 2 yrs. in Nov. Has not done IVIG.

 

He has been seeing a natureopathic dr. who says he is testing healthy.

 

Three months ago we did, what we think is the end of mold remediation, when he actually started to admit feeling better! This lasted 6 weeks until he caught chest infection,his PANS trigger. Not much improve since then. Also, when he started feeling better, my dh started seeing same dr. for chronic sinus bronchial issues and was feeling better (more than in several yrs.). Now my son seems to not be improving and my dh has been feeling like sinus infection is back.

 

Not sure if father and son have something going back and forth. Dh on abx again and had 40 injections in face, chest, back etc. which has srarted making him feel better the next day (not a pleasant treatment!). So watching that scenario play out.

 

Have you checked for mold in your home?

 

Lastly, sorry so long, have decided to try GcMAF injections in hopes of speeding up recovery. These are from a blood product but are sanitized more than most blood products (so they say).

 

Hope something in our story gives you something more to look at.

 

P.S. Gluten-free too to keep inflammation down as much as possible.

Edited October 18, 2012 by JuliaFaith

[lmkmip67]

I know it won't be dairy for sure as he hasn't had dairy, up until a month ago, in his whole life. nothing has gotten worse since we introduced dairy a month ago. WE did a 3 month allergy diet 2 years ago (wheat, soy, dairy and preservative/dye free) , and it was during the height of his tics and OCD. It did nothing. Not saying I won't try it again, but I have to try one thing at a time. It is yeast this month, we will see how that goes. Maybe next month we will try gluten.....I open to trying things, but I honestly feel like we have tried just about everything....

[blakes_mom]

A quick history, Pandas diagnosis for my 9 year old two years ago. 8 IVIGS, numerous combos of antibiotics, tested for everything, no co-infections, Igenex Lyme tests, negative twice. we are currently trying yeast next. No improvement yet. So we have been treating the OCD with prozac and have seen some improvement. He is still on Augmentin twice a day, that seems to keep tics away. Other than that, his therapist, a child psychologist, did some evals and just diagnosed him with ADHD. He is so hyper and can not focus at all. So now he is on Prozac, augmentin, difflucan and they want us to try ADHD medication. I am at the end here. We see Dr. B again at the beginning of Dec. But there isn't anything much else to do. School is hard because he can not focus. We are trying some behavior plans at home, we will see how that goes. But yep, at the end of my rope. DH is against more medication, but what do I do? I am not sure it is PANDAS any more, since we have tried everything and gotten nowhere with that. Yet antibiotics keep the tics away. So something is going on, just no idea what and he gets no where near baseline. I didn't want to post here because I don't want to bring others down. I don't want to take away hope for anyone. I guess maybe we just don't know what we are dealing with yet.....My last resort seems to be a local Lyme doctor, but why? The tests results showed negative. So I am not sure what that will get me. Maybe homeopathy next. Now sure. Anwyay, I did want to update. I am at wits end.

Hi Lisa, Just wondering if your son still has his tonsils and adenoids? My sons T & A was a big turning point for him.

 

 

Lisa

[lmkmip67]

A quick history, Pandas diagnosis for my 9 year old two years ago. 8 IVIGS, numerous combos of antibiotics, tested for everything, no co-infections, Igenex Lyme tests, negative twice. we are currently trying yeast next. No improvement yet. So we have been treating the OCD with prozac and have seen some improvement. He is still on Augmentin twice a day, that seems to keep tics away. Other than that, his therapist, a child psychologist, did some evals and just diagnosed him with ADHD. He is so hyper and can not focus at all. So now he is on Prozac, augmentin, difflucan and they want us to try ADHD medication. I am at the end here. We see Dr. B again at the beginning of Dec. But there isn't anything much else to do. School is hard because he can not focus. We are trying some behavior plans at home, we will see how that goes. But yep, at the end of my rope. DH is against more medication, but what do I do? I am not sure it is PANDAS any more, since we have tried everything and gotten nowhere with that. Yet antibiotics keep the tics away. So something is going on, just no idea what and he gets no where near baseline. I didn't want to post here because I don't want to bring others down. I don't want to take away hope for anyone. I guess maybe we just don't know what we are dealing with yet.....My last resort seems to be a local Lyme doctor, but why? The tests results showed negative. So I am not sure what that will get me. Maybe homeopathy next. Now sure. Anwyay, I did want to update. I am at wits end.

Hi Lisa, Just wondering if your son still has his tonsils and adenoids? My sons T & A was a big turning point for him.

 

 

Lisa

 

He does still have them, but he doesn't ever really get sick either. He is never strep positive. I don't know if I would just yank the out just because, unless I saw him always testing positive or being sick a lot. I am trying to weight treatments and reasons for treatments. It has not been suggested by Dr. B at all. So I don't know that it would be a viable option for us right now.

[EAMom]

A quick history, Pandas diagnosis for my 9 year old two years ago. 8 IVIGS, numerous combos of antibiotics, tested for everything, no co-infections, Igenex Lyme tests, negative twice. we are currently trying yeast next. No improvement yet. So we have been treating the OCD with prozac and have seen some improvement. He is still on Augmentin twice a day, that seems to keep tics away. Other than that, his therapist, a child psychologist, did some evals and just diagnosed him with ADHD. He is so hyper and can not focus at all. So now he is on Prozac, augmentin, difflucan and they want us to try ADHD medication. I am at the end here. We see Dr. B again at the beginning of Dec. But there isn't anything much else to do. School is hard because he can not focus. We are trying some behavior plans at home, we will see how that goes. But yep, at the end of my rope. DH is against more medication, but what do I do? I am not sure it is PANDAS any more, since we have tried everything and gotten nowhere with that. Yet antibiotics keep the tics away. So something is going on, just no idea what and he gets no where near baseline. I didn't want to post here because I don't want to bring others down. I don't want to take away hope for anyone. I guess maybe we just don't know what we are dealing with yet.....My last resort seems to be a local Lyme doctor, but why? The tests results showed negative. So I am not sure what that will get me. Maybe homeopathy next. Now sure. Anwyay, I did want to update. I am at wits end.

Hi Lisa, Just wondering if your son still has his tonsils and adenoids? My sons T & A was a big turning point for him.

 

 

Lisa

 

He does still have them, but he doesn't ever really get sick either. He is never strep positive. I don't know if I would just yank the out just because, unless I saw him always testing positive or being sick a lot. I am trying to weight treatments and reasons for treatments. It has not been suggested by Dr. B at all. So I don't know that it would be a viable option for us right now.

 

At the IOCDF conf. Dr. L. said she is culturing a lot of antibiotic resistant staph from PANDAS tonsils. Also, both Dr. L. and Dr. T. appear to be in the camp of recommending T/A b4 IVIG is tried.

[smartyjones]

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!

Edited October 18, 2012 by smartyjones

[Iowadawn]

A quick history, Pandas diagnosis for my 9 year old two years ago. 8 IVIGS, numerous combos of antibiotics, tested for everything, no co-infections, Igenex Lyme tests, negative twice. we are currently trying yeast next. No improvement yet. So we have been treating the OCD with prozac and have seen some improvement. He is still on Augmentin twice a day, that seems to keep tics away. Other than that, his therapist, a child psychologist, did some evals and just diagnosed him with ADHD. He is so hyper and can not focus at all. So now he is on Prozac, augmentin, difflucan and they want us to try ADHD medication. I am at the end here. We see Dr. B again at the beginning of Dec. But there isn't anything much else to do. School is hard because he can not focus. We are trying some behavior plans at home, we will see how that goes. But yep, at the end of my rope. DH is against more medication, but what do I do? I am not sure it is PANDAS any more, since we have tried everything and gotten nowhere with that. Yet antibiotics keep the tics away. So something is going on, just no idea what and he gets no where near baseline. I didn't want to post here because I don't want to bring others down. I don't want to take away hope for anyone. I guess maybe we just don't know what we are dealing with yet.....My last resort seems to be a local Lyme doctor, but why? The tests results showed negative. So I am not sure what that will get me. Maybe homeopathy next. Now sure. Anwyay, I did want to update. I am at wits end.

Hi Lisa, Just wondering if your son still has his tonsils and adenoids? My sons T & A was a big turning point for him.

 

 

Lisa

 

He does still have them, but he doesn't ever really get sick either. He is never strep positive. I don't know if I would just yank the out just because, unless I saw him always testing positive or being sick a lot. I am trying to weight treatments and reasons for treatments. It has not been suggested by Dr. B at all. So I don't know that it would be a viable option for us right now.

 

At the IOCDF conf. Dr. L. said she is culturing a lot of antibiotic resistant staph from PANDAS tonsils. Also, both Dr. L. and Dr. T. appear to be in the camp of recommending T/A b4 IVIG is tried.

 

 

We can't wait to get results of multiple labs drawn for Dr. T. My husband is flying out with ds13 to see him in person net Sat. We had a consult on the phone a month ago. i bet he says T & A as one thing to do. Dawn

[lmkmip67]

I appreciate all of the ideas. I really do. I guess I am just feeling deflated at the moment. I wonder if I should see a different PANS doctor? Not sure. I am leaning toward a local doc that is an llmd and looks at other things too. I am on my iPad so will reply more tomorrow. I have a feeling the diet isn't going to make a difference here, since we didn't see a difference before. We will keep peeling away the onion.

[dut]

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 or 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...

[dut]

another idea - have you looked at methylation and/or pyroluria as possibles?

[dcmom]

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!!!