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I did not find the specific mutation, just TPSAB1.

My daughter complains of both generalized and local pain. This may be heightened by fears. It is so difficult to understand and for her to communicate.

Would love to go but it would send my daughter's anxiety through the roof.

Interesting, thanks for sharing. And glad you are making progress towards recovery.

We also looked for second opinions. Our kids got better with abx, then that stopped working. We graduated to IVIG which worked the first time but not the second time. Insurance does not want to cover PEX so we are pretty much stuck. Getting to (PANDAS kids and travel do no go together) and affording other doctors can be difficult. I would recommend getting your primary care doc to test or refer to rhumatologist and pediatric endocrinologist first. This is what we did. We got our primary care doc to do a variety of bloodwork and tests like Igenex. All negative. We got a referral to a pediatric endocrinologist who found thyroid function OK. We saw a rheumatologist who found high ANA and RNP antibodies but didnt recommend treating. But at least we got information so if and when we see someone else it may be helpful. We are trying homeopathy now and slowly moving towards the REID diet.

This is completely anecdotal but our kids did IVIG + clindamycin and had that bump, but by one month showed improvements. We were told to expect a bump 2 weeks out.

What tests for infectious diseases have been done to date? What abx or other meds is he taking now? Have you had igg levels tested? Are there symptoms constant, waxing/waning or relapsing/remitting? Have they been increasing over time? For how long? No family history is a big clue. I have seen this story a few times. No current infections. Its my own kids story. Its PANDAS. They are exposed to some illness, have a diminished immune response (or may not even show any signs) and then present with increased neuro-psych, fatigue, muscular issues.

My kids also saw that two week bump, but by one month had noticeably improved. Hang in ther.e

I found the treatment option of IVIG fascinating. Its an autoimmune condition? I cannot find the link now but there was talk about this effecting only vaccinated kids?

The PANDAS mind can come up with all manner of craziness. We are super diligent, however, in taking precautions on what they are exposed to. Absolutely nothing violent, crude or rude. And they still obsess about those things. The power of ibuprofen is amazing.

That is correct - she works well with other providers. This can often work well as the other providers use insurance.

Can you please post links to these book?

Day late dollar short. My nephew (21 years old at the time with PANDAS and past Lyme) tried ECT. It had little effect on him. It was extremely hard on him and the family however.

Our kids usually improve somewhat with steroids but those effects disappear during the taper.

My sister's P-kid (adult, with severe depression, cognitive issues, bi-polar; who also went through multiple lyme infections) saw Dr T. They did a series of expensive tests that showed infections, which they treated. His condition improved some then deteriorated. He then did more genetic testing which netted nothing. They were disappointed and dropped him without pursuing further treatment. As far as I know he advocates IVIG but I have not read of many patients of his who have done PEX or Rituximab. If others have seen any contradictory information please correct me - there are some very devoted patients of his who may know better. We have used Dr L. She treats traditional strep mediated PANDAS but is open to PANS, although she herself will not treat other infections. If you use her I would also get Lymes and coinfection test as well other PANS drivers. Dr L is great.

@llm We are now using both augmentin and azithromycin as you recommended. The first week went super well, but another family we are friends with is sick, perhaps strep, and their ODD and ADHD has kicked up. Beyond that what should we pay attention to? @puppydog. Interesting because my daughters gut had a staph aureus infection a few months before she had her first major PANDAS flare. Thanks all.

I really appreciate you coming back and giving the full story. It is hard when forums like this tend to attract parent with difficult cases and those that find relief or even 100% recovery fly away. I am also glad to hear your daughter is doing well and living life. I can understand how grateful and thankful you must feel. Rejoice!

Rifampin turned my daughter's PANDAS around. The first time. The second time it did not appear to help much. But from you are dealing with bartonella and lyme.

I havent but would encourage you to write more on your childs issues as well as your own.

My kids also show marked improvement with ibuprofen.

Thanks for covering this llm, jan.

I am following this closely. I would like to better understand what Dr T does. I know he has a series of tests that have been published (and I lost that list). I know some people that have seen Dr T and not they spent a lot of out of pocket money on tests and treatments without improvement. Then again we have seen Dr L and have had brief periods of impovement, but are not stuck and stuck begging for insurance to cover PEX. Now here is what I thought was odd - it was hard to get specific treatments out of them.

My daughter has always had higher anxiety during bedtime and nighttime. Its one of the first symptoms for my daughter to appear after fatigue and urinary issues, and one of the last to go. She is still sleeping with us at nights.

Excellent, thank you. I remember you suggested that we move last year. So we did, but to an old house. I cannot find any evidence of mold and its in one of the driest counties in the east coast - if that helps, lol. We hit a bump with our well water - it came back positive for e-coli and coliform bacteria. Now we did not drink the water but the kids used it for their teeth etc and may have even drank some. We have only been here a month but see some improvement, but it is also summer, usually one of the better times of year. I very much appreciate people arguing for about anything, as long as it is polite and factual. We are desperate, and eagerly await about any tidbit of new research or information regarding L and P. Anyways, both of my kids are on prophylactic augmentin. So implementing your suggestion would not be hard to do. We have prescriptions for all kinds of things laying around. My sister's son has had Lyme a few times in the last decade. He had grown into a depressed man (23) unable to go to college (though he is quite bright) between the depression, ODD (once came into a class arguing against a book he never read) and cognitive issues. He sees some very pricey NYC doctors who now state that the inflammation is due to either.....P or L! He did herbs for some time, and is now doing somewhat better, able to engage with friends and has taken enough interest to go and get a job. And lately he just got sick but was able to recover without pysch symptoms following. This probably illustrates your point.

This is RNP http://emedicine.medscape.com/article/2086705-overview. I think it makes sense that it may not be Lupus given other symptoms. We went to a university hospital which is great but it is so difficult to get a hold of a doctor afterwards. @mama2alex We (well, the doctor) did not see any indication of Lyme. We only have so much money to throw around at these issues, so stopped there. But I do not think its Lyme because I have two sisters each with a PANDAS kid. There has to be some genetic factor despite no prior family history and a common environmental change. Now what that is I do not know... @llm I have never heard of alchornea. What did you try to treat with that and what dosage did you administer? I see so little informaiton on this online. @boysrlove24 we tested for Lymes and coinfections through Igenex. I try to put that stuff in my signature so I do not have to restate it for questions and also so others can immediately see where you are coming from for replies.