Gpookie

In our case, behavioral symptoms are drastically reduced or resolved within a half hour of administering Motrin.

I suffered Post viral chronic fatigue after catching mono from my sons. Zero growth from any type of gut bacteria. Only thing that cured me was TONS of probiotics (600 bln cfu+ per day) and liver cleanse. Took 2 years :-(....

Perhaps Dr. Layton in Towson?

KLW is right. Kennedy Center on October 16?

I'm not sure what the details of your case are, but when my kids had a significant increase in symptoms on antibiotics or prednisone, we tripled down on detox. With prednisone also, it was that while treating the inflammation/PANDAS, it was kicking up the yeast symtpoms. We learned over the years that the list of Pandas symptoms we had made were not all pandas, but some were yeast (hyperactivity & silliness which calmed with garlic pills and detox) and some were die-off (general malaise, depression, moody which calmed with heavy detox). The pandas symptoms were the OcD, ODD, corpolalia movement issues/SC, intrusive thoughts, cognitive decline and handwriting issues). Ivig and antibiotics helped the pandas symptoms Once we learned the different symptom sets for our kids, we learned difference we could adjust the treatments and eventually got them back up to 200% with blips that only we as the parents notice. Hope this helps?

Sorry that you are going through this :-(. What treatments put her into remission before? Hope things turn around for you!

We swabbed them all over and it came back positive for perianal Strep D. Sent out the culture and the only sensitivity was to the Clarithromycin.

Is it enterococcus as in Strep D? My son's had that last winter and when we added clarithromycin they went from 80% to 200% and have held. Apparently it was resistant to all other antibiotics... That is when we turned the corner with PANS/PANDAS. Massive detox efforts helped make the change, too, but the biaxin was our miracle after 3 years of good steady improvement with IVIG and Augmentin. Our pediatrician took the time to really research the best antibiotic for it. Good luck.

We only had urinary incontinence when we gave my son Zyrtec. That is a rare side effect with Zyrtec for some kids....

We see Dr. L in person when there is a PANS related change. She always takes us right away or emails us back immediately. (3 times a year). Her assistants take care of the meds as needed.. She knows both boys so well, that we sometimes ask a quick question via email and she can point us in the right direction within hours. Our first line is our PANS/PANDAS pediatrician who is a mile away. He checks for infections, prescribes any meds we need on a moments notice, orders any IVIG we need, checks IgG subclass levels (3 times a year not including phone calls). Over the years, it's become easier to know who to contact for what. That helps both us and the doctors stay focused and calm. We've only seen an immunologist once, then ped took over. Integrative Dr. for allergies and gut (3 times) Our boys are 200%+ now, but we met with Dr. L. last week just to check in. We're PANS and hypogammaglobulemia. What helped the most is to realize that getting better takes months/years. While we had improvements in jumps overnight at times, there was a very slow steady line upwards... I guess what I'm saying is that we treat the specialists as specialists and rely on our pediatrician as the first line (who we see the most). However, we can do this because our pediatrician is very very very well versed and experienced with complicated health issues and he works well with other doctors. This allows us to only need to contact specialists for very special issues...We feel that we have been blessed with a good network of support... Hope this helps?

Sounds like our experience with Michael Keller at Children's Hospital in DC. He even at first didn't believe I c was the mother of my kids. God Bless you and I hope you get help for your daughter.

Well....we are finally back from our long annual vacation. I must say, things did not go as expected ;-). The boys stayed excellent through the entire 6 week trip (no bumps!) and we did not have to use the Rifampin :-). They remain at such an awesome level (I'd say 200%+ since we added Biaxin in March) that when we had our regular check-up with Dr. L last week, she suggested that we stop the Augmentin that they've been taking for 3 years. In a big leap of faith, we stopped the Augmentin from one day to the next. It's been a week and no issues! However, they are starting summer camp this week, so we'll see how they do around other kids and when school starts. If they regress, we can always add it back. We also drew bloodwork on Saturday to see if their IgG subclass levels have held. If they are lower, we'll start the monthly LD IVIG again. They'll keep taking Biaxin for the foreseeable future... Thought I'd circle back in case anyone was wondering how it went ;-).

Perhaps ypu could have ypur ped call one of the pediatricians on the PANDAS network list? Our pediatrician from day 1 has been a godsend. (Dr. Baig in Maryland). Quick diagnosis, available at a moment's notice, on top of things, cultures the boys every time he sees them whether we ask for it or not. I would say a good day pediatrician has been even more valuable than Dr. L. (though she is also fantastic). Most important I find is that your pediatrician listens, researches and can cooperate with you and other specialists. I would NOT recommend a throw-everything-at-it approach. A good pediatrician will separate the PANDAS issues from immune issues, from allergy issues, from nutritional issues, etc. One thing I love about our pediatrician is that he only ever prescribed a medication when it was targeted ( i.e. the specific strain of bacteria matched with the very specific antibiotic or other treatment). He listens, knows his meds and does his research, and in general, all the things that make a good doctor good. Just my two cents.

My son started LDI simply because his IgE level was 1800 (with no outward signs of allergies and also zero food allergies). Just another attempt to calm down his system...I do LDI and it helped tremendously with my seasonal allergies. Don't know about it for PANDAS if allergies aren't a trigger. The IVIGs are for their subclass deficiencies. Augmentin/biaxin mix for strep & PANDAS... Kids are 100%+.

Yes, nancyd is correct. My kids get IVIG and LDI...

I would check his IgG subclasses ASAP. And serotypes...Sounds as if he's immune deficient...

Hope to see some of you there... http://www.medstarhealth.org/education/continuing-medical-education/medstar-washington-hospital-center/upcoming-cme-meetings/pandaspans-2016-an-update-on-current-management-and-new-treatment-strategies/#q={}

I was doing some administrative work today and actually found out why the HD IVIG at the end of the trial didn't need separate insurance approval. Given that my kids have hypogammaglobulinemia, we knew that the insurance had approved 6 months worth of infusions. I found out today that due to that diagnosis and the immunologist's Letter of Medical Necessity to the insurance, they were actually approved for a full year, without having to renew the approval. Also, it's all covered 100% (no deductible), but that's due to the type of plan we have (preferred PPO) and the infusion company is in-network. Thought I'd pass on this info, as I wasn't aware of it myself. This is encouraging. If you don't mind saying, which BCBS is this? Our BCBS is IL (which is not the state we live in but whatever). We are awaiting a decision on coverage for LD for a subclass deficiency and we don't want to do the pneumovax challenge (had prevnar as a baby, recent testing shows no response).

No experience with acupuncture, but we have had to address some of the issues you mentioned. We did LDA for one of our son's once we discovered that his IgE was +1800. We did the shots for food and inhalants (tho he showed no signs of food allergy). Worked like a charm, plus doubling up on probiotics. Big turnaround when adding digestive enzymes before meals. We didn't have to follow a special diet either.

Thank you, too, James. That is also helpful :-).

Thank you, sf_mom! That's what I was looking for. My kids also have SAD (mild PANDAS). If we need to start we will definitely do the entire course (hopefully, we won't need to start). Thank you for the insights :-).

Isjoca, You may want to post your question in a relevant thread or post your question separately. All the best.

Tonsils came out 2 years ago :-), thank God. They were literally crumbling! It was a mess...Strep D was from a perianal swab. My kids like to throw curveballs...lol. :-).

None. As mentioned in my original post, we are not planning on giving it now. Whenever we go on our 5-6 week vacation, our doc makes sure we have meds for all possible situations. So he wrote a script for Rifampin IN CASE they get another strep Infection while travelling, as described in my original post. I was simply checking to see if anyone else had ever used all 3. Never planned to change current meds without a reason. Our PANDAS journey (4 years, not including stepdaughter!) has been quite mild, but yours sounds as if it was much more rough. We've been in a great place with our kids for some time, with little interventions and not much guessing. It's all been pretty straightforward. You may have confused my question with someone else? Take care and God bless!

Hi, thx. I'm sorry my question was misunterstood. We aren't at all thinking about taking the Augmentin or biaxin away. That was not my question. They need it at least for a year. We're not touching that. We're just wondering if anyone had experience ADD ING rifampin to it (if they get another infection)