going to see Dr T tomorrow/PEX

[momoffive]

I agree with TPotter, and would jump at pex. Both of my daughters had it. While I do not necessarily think it is a cure, it put both daughters in an almost immediate, 100% remission. They have had some minor symptom flares with immune challenges since, but mild and manageable.

 

You will also need Dr T to help with agressive mgmt using abc and steroid bursts.

 

I also, of course agree with thorough testing, and the need to rid of infection.

Would the testing and aggressive abx need to come before PEX? I did not schedule it yet, so I want to be sure the order is correct. Also, I assume Dr. T supports PEX?

[tired mom]

I agree with TPotter, and would jump at pex. Both of my daughters had it. While I do not necessarily think it is a cure, it put both daughters in an almost immediate, 100% remission. They have had some minor symptom flares with immune challenges since, but mild and manageable.

 

You will also need Dr T to help with agressive mgmt using abc and steroid bursts.

 

I also, of course agree with thorough testing, and the need to rid of infection.

Would the testing and aggressive abx need to come before PEX? I did not schedule it yet, so I want to be sure the order is correct. Also, I assume Dr. T supports PEX?

I assume he would support as he suggested to me that if abx's did not work for my dd IVIG may be needed.Good luck with your appt.

[philamom]

My DD first saw Dr. E and she diagnosed her with PANDAS. She's lovely but didn't clue me in enough on the science/medical end and I wanted that. Plus she kept her on Pen VK which pediatrician started her on day before CHOP appt. Things got better for a few days and then drastically worse. A week later emailed and called Dr. T. and he was great! He wanted to see her ASAP--felt Dr. E's dx was spot on but abx not agressive enough. He said DD had a "severe textbook case caught early" but Pen VK wasn't going to cut it. He switched her to Biaxin (broad spectrum till we knew the exact cause) and added ibuprofen to her daily med dose. He was very willing to explain and talk. I loved the fact that he had my DD and rest of our family do blood work...strep titers, Mycoplasma and Lymes. Her history screamed strep issues (3 bouts of persistent strep throat in a row...literally on abx for 10 days and she'd have a positive strep culture within 3 days off abx) but Dr. T. wanted to rule out MycoP and Lymes b/c there are cases where kids can test positive for more than one bacteria or disease. I liked that difinitive approach for a disorder that feels so abstract at times. Ironically she had normal results for strep, mycoP and Lymes but she fit the PANDAS dx perfectly. Her symptoms were severe and came on within days. Scariest thing I've ever seen. It's unexplainable until you've lived it...as all of us here know. Biaxin improved things for her to a point but 7 wks ago Dr. T. switched her to Augmentin and that has been her best abx so far for her. She's about 85-90% better now. The true test will be if she goes to school when it starts. This popped up the last month of school (about 4 wks. after tonsils and adenoids removed) and she missed pretty much the last month of school which is just so unlike her.

 

Bring a pen and paper to take notes @ appt....lots of info! If in the Philly area, another mom and I are starting up a support group! Best of luck!

I'm interested in the support group! Will you be the posting the details?

[philamom]

I would jump at PEX. We found it worked extremely well, and were hoping to get it repeated, but won't be able to now. We tried to get it through Dr. E. last year after my DS was hospitalized at CHOP, and really got nowhere with her. I don't know if things have changed, but it was really disappointing, because we left her with no answers.

I THINK she does it a different way than Dr. L, does the procedure in one day. She's also very conservative on the abx afterwards. She may have changed her protocol though. I'm in contact with someone off the forum, who's daughter had pex with Dr. E but is now doing Ivig with Dr. B.

[momoffive]

I would jump at PEX. We found it worked extremely well, and were hoping to get it repeated, but won't be able to now. We tried to get it through Dr. E. last year after my DS was hospitalized at CHOP, and really got nowhere with her. I don't know if things have changed, but it was really disappointing, because we left her with no answers.

I THINK she does it a different way than Dr. L, does the procedure in one day. She's also very conservative on the abx afterwards. She may have changed her protocol though. I'm in contact with someone off the forum, who's daughter had pex with Dr. E but is now doing Ivig with Dr. B.

I went for a consultation. It takes 2 hours. they put an IV in each arm [but it is metal "tubing"] the blood goes through a machine and back [sorry for my lack of proper terminology]. the child watches movies is fed ice cream so on.....

[philamom]

I would jump at PEX. We found it worked extremely well, and were hoping to get it repeated, but won't be able to now. We tried to get it through Dr. E. last year after my DS was hospitalized at CHOP, and really got nowhere with her. I don't know if things have changed, but it was really disappointing, because we left her with no answers.

I THINK she does it a different way than Dr. L, does the procedure in one day. She's also very conservative on the abx afterwards. She may have changed her protocol though. I'm in contact with someone off the forum, who's daughter had pex with Dr. E but is now doing Ivig with Dr. B.

I went for a consultation. It takes 2 hours. they put an IV in each arm [but it is metal "tubing"] the blood goes through a machine and back [sorry for my lack of proper terminology]. the child watches movies is fed ice cream so on.....

Yes, I'm sure that is different than how Dr. L does PEX. I don't have experience with the procedure but hopefully someone else will chime in.

[philamom]

Good luck with your appointment! I sent you a pm with the labs.

[momoffive]

Good luck with your appointment! I sent you a pm with the labs.

thanks to everyone, you are right he is very caring and good at his explanations. He ordered labs work and a stronger abx. he did however agree that PEX may be needed soon regardless of the abx work d/t the type of symptoms.

 

thanks again

[momaine]

I would jump at PEX. We found it worked extremely well, and were hoping to get it repeated, but won't be able to now. We tried to get it through Dr. E. last year after my DS was hospitalized at CHOP, and really got nowhere with her. I don't know if things have changed, but it was really disappointing, because we left her with no answers.

I THINK she does it a different way than Dr. L, does the procedure in one day. She's also very conservative on the abx afterwards. She may have changed her protocol though. I'm in contact with someone off the forum, who's daughter had pex with Dr. E but is now doing Ivig with Dr. B.

I know a family who had PEX with Dr E. about a dozen times before finally going to Dr. B and getting IVIG. Though I can't speak for them, I'm pretty certain that they would advise you to see Dr. B. for IVIG following the PEX. He's only an hour from Dr. T who did not or could not order IVIG for my dd. He is very knowledgable and caring but in the end my dd needed IVIG and I could not get that from him. Also, Dr. B found the selective immune deficiency in my dd that qualified her for IVIG through our insurance. That was huge for us. Good luck.

[philamom]

I also know of a family off the forum who has had PEX with Dr. E and is currently doing IVIG with Dr. B. My daughter also has an immune deficiency and is receiving treatment with him. He is a wonderful doctor! Let me know how you make out with the lab tests.

[momoffive]

I also know of a family off the forum who has had PEX with Dr. E and is currently doing IVIG with Dr. B. My daughter also has an immune deficiency and is receiving treatment with him. He is a wonderful doctor! Let me know how you make out with the lab tests.

Thanks for the info. is it hard to get an appt w/ Dr B? He is only about 1 hour away from me.

[philamom]

I also know of a family off the forum who has had PEX with Dr. E and is currently doing IVIG with Dr. B. My daughter also has an immune deficiency and is receiving treatment with him. He is a wonderful doctor! Let me know how you make out with the lab tests.

Thanks for the info. is it hard to get an appt w/ Dr B? He is only about 1 hour away from me.

No, not at all. He will want to see a copy of the recent lab work you had done. I suggest making an appt. now and if needed, you can reschedule or cancel. And he does accept insurance.

[mkur]

Tell them your child has pandas - he wants to help with pandas kids.