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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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Thesuzie

We need held with finding a dr on long island

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My 11 yo daughter has complex and vocal tics, OCD, extreme fatigue, joint pain, episodically for 2 years. Symptoms are brought on by illnesses such as strep, upper respiratory infections and viruses. Each episode appears to be more severe, it now includes chest pain. She is sick very frequently and each time her behavior worsens and she becomes more dependent and regressed. The pediatrician tells me she has Tourette's and dismisses the other symptoms. I have brought her to a neurologist, immunologist, infectious disease, cardiologist, nuero psychiatrist, psychologist and homeopathic. When mentioning pandas, all providers shrugged and said its controversial. The best she's done is on a yeast free diet. Then, her heels became inflamed , called sever's disease, adding an orthopedist. She has been on crutches since 1/12/13 with little progress. I have appts with 2 pediartricians hopIng pandas will be an available topic to explore. I also scheduled a rhuemotolgist for next week. I called Dr T in NJ who will see us, however, I am looking for a provider who will accept insurance and who may be closer. I am open to any suggestions or referrals. Thank you.

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Hi I am sorry you are going through this. Some of the symptoms you describe are consistent with Lyme disease and bartonella: inflamed heels, fatigue, joint pain, chest pain are big red flags. Most doctors are not experienced/familiar enough to diagnose/treat Lyme and co infections. I would get a cardiology workup ASAP as Lyme can cause heart block. Also sorry to tell you it will be almost impossible to find a trained doctor who can diagnose and treat Lyme and co infections. I will pm you a couple if names today but they are not on Long Island. Lyme and confections can co exist with strep, mycoplasma and other infections and go under the umbrella PANS. The heel pain is an especially specific symptom for bartonella which would warrant seeing a specialist. Dr T is seen by many on this board but is not trained/experience in Lyme, I understand he is very knowledgable about strep but we don't have any personal experience as we see other doctors. You may end up needing a team of a few doctors. I would also say it's a good time to put a financial plan together. In my case I borrowed from my 401k and credit card loans. Not ideal but Iits what it took to get DD better. Insurance doctors had me standing by helplessly watching my then 8 yo deteriorate before my eyes. They proposed psych meds and pain medication. DD is recovering at about 95% without either. The costs ran between 15-20k the first year. This year is considerably less. Voltaren is a topical anti inflammatory, you may want to ask your doctor if this would be an option for your daughter's heel pain in the interim while you seek treatment.

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You may want to try to get in with Dr. Bouboulis in CT or if you can't get in for a while with him, one of his staff. He is an immunologist and does take insurance. We have Cigna. Just be prepared if you get him to wait for awhile- a morning appointment would be better. We have been seeing him for Pans as well as Dr. Jones in CT for Lyme.

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Sorry, but I have to agree with Hopeny. You won't have much luck finding a PANDAS/PANS specialist or LLMD (lyme literate medical doctor) that accepts insurance. The treatments they use are often outside the scope of what insurance companies deem acceptable (long-term abx, multiple IVIG etc). Anyway, we are travelling from Canada to our lyme specialist in NY and don't have the option of using American medical insurance. DD11's treatments are costing us about. $1000.00 per month, or approx $25.000.00 for the 2 years she has been undergoing treatment. We plan to roll that amount back unto our mortgage when it comes due next month (rates are good at the moment).

 

You will also have little or no luck persuading any mainstream doctor that your daughter's symptoms may be caused by chronic bacterial infections and the autoimmune reactions they can cause. Start reading the forum archives - there is so much hope to be found in the information available there.

 

Please read my signature line. My DD11 suffered from all of the symptoms you list. She was so fatigued she couldn't play. Her executive function was minimal and she could not concentrate. Her doctor doctor said her pain was all in her head, that she didn't want to go to school, and that he would prescribe ritalin for ADD and clonapin for ticcing.

 

Now she has more energy than most of her friends! She concentrates, is happy, compliant, getting along with her peers, is no longer regressing with viral infections, is getting A's in school, and no longer has pain (even with fairly extreme exertion). Her ticcing comes and goes depending on herxheimer reactions (all this new jargon you get to learn) she is having to protocol changes - it is at a minimum now as well. She is SO MUCH BETTER after 2 years of treatment that we are starting to wean her off combo abx. She has been treated by a LLMD in Buffalo, and we have recently added a naturopath in Southern Ontario to help us make the switch to a more natural protocol.

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Kerry makes a good point about Dr B, he's our only insurance doc and I think he's amazing. I'm not sure what his wait list is now but it's a good idea to get an appt even if its far away.

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We see Dr.T and he does accept our insurance (Oxford).

 

You can try Dr.Susan Schulman in Brooklyn (shorter drive than Ramsey,NJ) from LI. She is a pediatrician who has a good PANDAS reputation (she is listed on pandas network board). We have not seen her, but I am going to call today and heard good things from a service in Monsey,NY. You can PM me if you want their information.

T.Anna

DS14

Bronx,NY

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T. Anna, what do you mean a service in Monsey? Do you mean you heard good things about a dr. in Monsey regarding pandas or that you heard good things about Dr. Shulman in Brooklyn from a service in Monsey?

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It is a Jewish charity service in Monsey that helps people find professional (doctors) for certain diseases. A friend suggested I call and they recommended Dr. Schulman as a PANDAS specialist. I was impressed that no one asked me what PANDAS was or was surprised. "When I hear PANDAS, the name that comes to mind is Dr. Schulman" and I had just seen her name on the Pandas Network web site too. Figured it was worth check into.

 

T.Anna

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Thanks.. Yes, Dr. T is very close to here but not what I need. I took my son to him several years ago. I really just need a local dr for the little things..and figured it was worth a shot when you mentioned Monsey :) My son is mild but sometimes little things come up that really a pediatrician could address if I could find one who would be comfortable doing so.

Edited by ajcire

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I agree with HopeNY that you really need to look into Lyme, Bartonella, Babesia, and other co-infections of lyme/tick borne diseases with the kinds of symptoms you are describing. Although other infections can certainly trigger PANS (including strep, viruses, staph, etc, etc.) the treatment for lyme, bartonella, etc, is so much more comprehensive, that it pretty much covers the strep, etc. I would NOT recommend Dr. T. for that. If you want the name of an LLMD, we use one in MD, and his rates are reasonable. You can PM me. We also treat with ART, which follows the Klinghardt protocol, and she uses a combination of homeopathy, herbals, and overall, a more natural approach, in addition to the combo abx that, unfortunately is unavoidable.

 

Unfortunately, traditional doctors who take insurance (except Dr. B., and maybe a few others) really don't get what is going on.

 

And, if you want research that shows exactly what strep does to the body, you can always suggest that they look at Daphne Joel (University of Tel Aviv's) research last year that shows that strep antibodies take hold in the basal ganglia, and also on the dopamine 1 and 2 receptors. The rats that were studied, developed tics, OCD and anxiety. There is also a study from Columbia University in 2010 that was a mouse study that showed that mice injected with strep antibodies, developed the same set of symptoms (the Tel Aviv study actually showed that the antibodies took hold...it went a step or 2 further than Columbia's mouse study.)

 

But, I still wouldn't expect that any of these doctors are going to be able to help you, and the sooner you get her seen by someone who knows what they are doing...especially since she has some clear symptoms of lyme and bartonella and others, the better for her.

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I agree about the advice that you need to look into Lyme, Bartonella, Babesia, and other co-infections of lyme/tick borne diseases. Especially as LI from what I remember has many deer and ticks.

 

It is also necessary to understand how much money and travel can be spent on treating PANS/Lyme.

 

I wish traveling with DS was still easy. Definitely go as far as you can while everyone is still able.

 

T.Anna

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Hi...I live on Long Island and have been going thru much of what you described for almost 2 years. We have an appointment with Dr. B in July (very long wait) but in the meantime got an appointment with a pediatric immuniologist in NJ that deals with rare childhood diseases and specializes in Pandas/Pans. Her wait was 4 weeks and she does take some insurances. Message me if you want more info and if you have any questions. I basically have been treating my son myself for the past 1.5 years (via recommendatrions from others) and he is doing better.

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