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Not quite sure what to do next...


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I agree with tpotter regards finding a DAN. I've just done a quick internet search and found lists of DANs/Biomedical doctors on Autism websites, with lists including doctors in Boston eg: http://www.autismtoday.com/clinician-list.html I don't know how old the lists are and there are disclaimers on such lists that you should read. Like everything there are good ones and not so good...I'd be looking for a dr who has kept up to date and continues to attend the practitioner conferences - they're much more likely to know about and even treat PANDAS/PANS. Ring and suss them out.

 

We've had good results with a DAN dr - DS is so much better since we started dealing with gut issues and Vit/mineral deficiencies which impacted on his immune system and neurotransmitter production. I think it's been the combined approaches of supplements, diet, antibiotics, probiotics - everything in concert. It has been slow but steady improvement...no Wow! moments except for when we look back and we see how far he's come! I won't lie to you - it hasn't come cheap, but it's been so worth it! (Otherwise, we'd have sold the house to come knocking on the doors of the PANDAS specialists in the USA!)

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I agree with tpotter regards finding a DAN. I've just done a quick internet search and found lists of DANs/Biomedical doctors on Autism websites, with lists including doctors in Boston eg: http://www.autismtoday.com/clinician-list.html I don't know how old the lists are and there are disclaimers on such lists that you should read. Like everything there are good ones and not so good...I'd be looking for a dr who has kept up to date and continues to attend the practitioner conferences - they're much more likely to know about and even treat PANDAS/PANS. Ring and suss them out.

 

We've had good results with a DAN dr - DS is so much better since we started dealing with gut issues and Vit/mineral deficiencies which impacted on his immune system and neurotransmitter production. I think it's been the combined approaches of supplements, diet, antibiotics, probiotics - everything in concert. It has been slow but steady improvement...no Wow! moments except for when we look back and we see how far he's come! I won't lie to you - it hasn't come cheap, but it's been so worth it! (Otherwise, we'd have sold the house to come knocking on the doors of the PANDAS specialists in the USA!)

 

 

Were you the one that used mutaflor? did you find that helpful?

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Were you the one that used mutaflor? did you find that helpful?

Yes - Our DAN dr prescribed the Mutaflor protocol, because according to a fecal screen DS had virtually no E.coli - less than 0.1% - whereas it should have been between 70 -90%. It had been replaced by strep and staph - NOT a good thing for gut function and everything flowing from that - the health of his immune system and neurotransmitter production. All we knew was that DS had an occasional bowel upset - we'd been more concerned with PANDAS symptoms! So no wonder he had vit/mineral deficiencies and he caught every cold going around which would turn bacterial! Such a learning curve!

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Dr Jenike does not see kids. dr Geller at Mass General will treat for PANDAS but you will wait to get in. Call and tell them you need to be seen ASAP, feel free to use my name (Tiffani Maxwell) I would also make an appt w/ dr Mark Pasternack ,also at MGH. What insurance do you have? For fastest treatment use Dr T. He is now sharing many patients with the PANDAS docs at MGH. I would try and get Dr t covered in network with GAP coverage. You will still pay out of pcket but you will probably save $$. Feel free to call me 508-667-0574. You are in Metrowest right??

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For OCD I would highly recommend the intensive ERP/CBT programs. Although IVIG helped my DD greatly, the ERP was a crucial part of her doing well. Contact USF for Dr. Storch's program. Really worth while. They may even no of someone there that does it but just be sure to get a daily intensive program with someone truly trained to do it.

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Dr Jenike does not see kids. dr Geller at Mass General will treat for PANDAS but you will wait to get in. Call and tell them you need to be seen ASAP, feel free to use my name (Tiffani Maxwell) I would also make an appt w/ dr Mark Pasternack ,also at MGH. What insurance do you have? For fastest treatment use Dr T. He is now sharing many patients with the PANDAS docs at MGH. I would try and get Dr t covered in network with GAP coverage. You will still pay out of pcket but you will probably save $$. Feel free to call me 508-667-0574. You are in Metrowest right??

 

Yep, in Metrowest. We have United for insurance. I may look into some of these soon. I still have yet to hear back from Dr. B or even get an appointment. No one called back like they said they would. I am going to have to call back on Monday.

 

For OCD I would highly recommend the intensive ERP/CBT programs. Although IVIG helped my DD greatly, the ERP was a crucial part of her doing well. Contact USF for Dr. Storch's program. Really worth while. They may even no of someone there that does it but just be sure to get a daily intensive program with someone truly trained to do it.

 

This is on our back burner for the future once Ian stabilizes a little bit. I can see how helpful it would be.

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OK, just saw you have United. You will have a much easier time getting lVlG at MGH. call me when you can,I can help you.

 

Thanks! I don't think we will be doing any more IVIGs since we have already done 9. So I am not sure what help I can get for Ian locally at MGH. But the good news is I finally did get an appointment with Dr. B for Aug. 13th. So we will be talking about what to do going forward. I think the receptionist though I was a new patient last week, she seemed in a much better mood today, too. lol Maybe it was a tough day. Anyway, so I am feeling better about that. I also think we are going to make an appointment with a local integrative doctor that I have kept in the back of my mind for months now as we wait to see our next move.

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OK, just saw you have United. You will have a much easier time getting lVlG at MGH. call me when you can,I can help you.

 

Thanks! I don't think we will be doing any more IVIGs since we have already done 9. So I am not sure what help I can get for Ian locally at MGH. But the good news is I finally did get an appointment with Dr. B for Aug. 13th. So we will be talking about what to do going forward. I think the receptionist though I was a new patient last week, she seemed in a much better mood today, too. lol Maybe it was a tough day. Anyway, so I am feeling better about that. I also think we are going to make an appointment with a local integrative doctor that I have kept in the back of my mind for months now as we wait to see our next move.

We have an appt with Dr B. on Aug 13th as well. Maybe we'll see you there.

I've also made an appt with an Integrative Dr on Aug 8th. I would like another opinion and help choosing the right supplements if he needs to continue with Abx for an extended period. We'll see what they both Dr.'s have to say and move on from there.

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