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Back from our trip to USF.....


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Well we made it back from our spring break trip to Florida. We went down for a week to do a short CBT refresher at Rothman Center. Also, had a follow up appointment for my daughter with Dr. M. It was an extremely productive week. Thanks to everyone for your prayers and positive thoughts. We had both my middle son and my daughter do the CBT, and it was wonderful as usual. They have such a great program and it was awesome for my son who has never been before. My daughter was able to get back into the grove (so to speak), and mostly, my husband (who wasnt able to go before), got some great information from the therapist.

 

I talked to Dr. M. extensively about my daughter not progressing and asked her opinion on that. She said that most people dont give enough credit to the fact that these kids wont get better as long as they are exposed to others who have strep. Of course, she said we need to continue working on the Myco p. also. So, she did a strep test on the entire family. Quite surprisingly, both of my sons and myself came back positive! Odd thing is that both of my boys are on antibiotics. My oldest son takes amoxicillin, and my middle son takes Zithromax. So her suggestion was to send the culture off for sensitivity to make sure this strain isnt Zith resistant and then they will call us back this week and make a recommendation for antibiotics. She really feels this is why my daughter isnt improving. My daughter is currently on Biaxin and they did a culture on her but could only get one so they sent it off for a culture and sensitivity instead of a rapid strep so Im not sure if she was positive while on antibiotics or not.

 

She also ordered more labs. One of the things she ordered was MTHFR testing. My daughter never has had high strep titers, and she said that for whatever reason, many of the kids that dont mount a high immune response are often MTHFR positive. My daughter does however have high Myco P titers so Im not sure how that plays into the whole immune response theory. We will go sometime this week to get the labs drawn since they dont actually draw them at her office. One last thing she suggested was for us to have my daughter see their Immunologist. I told her we had an appointment to see Dr. B in a couple weeks. She didnt discourage it but just said she likes to use their immunology department and that she felt we could get the same thing there as we could with Dr. B. I mentioned that I was looking at testing for more / different infections and she only discussed clearing the strep and how important it is to keep her environment strep free. Im sure there is a lot of truth in that. She did speak highly of Dr. B but said that many people go there to get IVIG and we already have access to that. My husband really wants to go to the Immunologist there at USF instead of Dr B, I think because he just really likes USF and has a comfort level there. Dr. M. says they are very accustomed to working with PANS patients. We would probably be able to get in early June.

 

So, that is the summary of our trip. Overall, I am very pleased and have come back with renewed hope for improvement. She is doing better managing her OCD with the skills from the CBT program. The trick there is just keeping it up and staying firm as the parent. Always difficult in the face of rages. I am still back and forth on what to do about the Immunology appointment. As always, I welcome any input, opinions, experiences, etc…..

 

 

Dedee

Edited by Dedee
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Deedee,

 

I'm glad that you had a good trip. We've seen the immunologist that Dr. M has recommended. We liked her, she was very knowledgeable about PANDAS - which you would expect being associated with Dr. M. I will say this - however, they do take their lead from Dr. M. If you want them to look for other infections, etc...that Dr. M isn't focusing on - they may or they may not. I don't know.

 

We're going to see Dr. B for the first time in June, our problem being chronic infection with absolutely NO immune deficienies whatso ever. Quite frustrating for everyone.

 

With that being said, we're also seeing the infectious disease specialist that was recommended by Dr. M's office as well. The one thing that I will say about it - is when they recommend a doctor, they make sure that dr has all the information they need to help your child. I called the ID specialist the day after the appointment where they recommended her - they already had my son's medical records, information, and detailed history on hand and got us in within 3 weeks (we go next week.)

 

Just thought I'd share our experiences!!

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Welcome home, DeeDee! Glad things went well and you are on a good path again.

 

And hang strong when your DD's OCD tries to boss you around! If you find you need to vent, come on in here to the forum. The venting's fine! :lol:

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Well, I guees it looks like we will be doing the USF Immunology Dept instead of Dr. B for now. My husband is set on the idea of staying with USF for now and also he wouldn't be able to get off work to go with me for the long drive and appt with Dr. B. It makes me sad because I think we would get more answers and have a more productive trip going to see Dr. B. But, I feel like I need to give a little on this issue for my husbands sake. He has come so far, and agreed to do many things for me that I know he didn't feel comfortable with, and I think it's only fair that I should be open to his opinions too. It's just really hard when I feel in my heart that Dr. B would be a better fit. I'm going to pray really hard that the USF Immunologist will be helpful. Thanks to everyone for your help.

 

Dedee

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Deedee,

 

I did like the immunologist at USF - she was very nice, and knowledgeable. She also gave me a new perspective "explination" on PANDAS and why my son's immunology reports were all madenningly normal, yet he still has PANDAS.

 

While we are on our way to Dr. B's in June, I wouldn't consider this compromise with your husband a waste of time. If the USF immunologists can offer another piece of the puzzle, it may be the one your missing and may save you a trip north - or at the least, it will provide Dr. B ulitmately with more information to base his assessment on in the future.

 

Good luck!

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Thanks so much Airial95. I always look forward to your feedback since you have so much experience with the USF group. I'm going to try to stay positive. My husband has suggested that we see if we can get in and do another week of CBT with the therapist that has been seeing my daughter while we are there. I do love that idea because this woman is so wonderful with my daughter and we haven't had much luck with the person we were using local. So that would make it worth the trip. I think I am going to go ahead and see if the Integrative Medicine practitioner will do Lyme testing on my daughter in the mean time. I know she may not be very good at interpreting the results, but it would give me an idea of where we need to go next. I made the appointment for the blood draw....we go next Tuesday. That's always something to look forward to......

 

Dedee

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Hi DeeDee! We also see Dr. M for my DS who had his onset of PANDAS in September. She has really helped my DS-- we were recently referred by her to USF Allergy/Immunology Dr. Dorsey- so I am not sure if that will be the same Doc you are seeing or not. Dr. M felt that allergy was a huge trigger for my DS and guess what she was correct! We went to Dr. Dorsey and just like Dr. Ms office Dr. Dorsey and her fellows were thourough and very knowledgeable about PANDAS. (too funny our fellow at Dr M is Dr. Brown and our fellow at Dr. D is another Dr. Brown!) My DS turned out to be HIGHLY allergic to almost everything you can immagine as determined by scratch test. He is now taking Flonase and Zyrtec (which I was wary of) but it turns out that it has helped him tremendously. He is breathing out of his nose for the first time since onset of PANDAS and is also now eating with a more normal appetite and a broader range of foods for the first time in his life! Dr. Dorsey also gave us som immuno testing to do and a direction to go there as well. So I guess the point is Dr. M really steered us in the right direction, so I think you can use this info to help you feel good about your decision. Good luck!

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Thank you so much for your reply. That does make me feel better. While we are going primarily for my daughter, we are also taking my son who is a milder case of PANS. He has terrible allergies and has a constant stuffy nose and sneezing. So maybe it will be helpful for him. I appreciate your input.

 

Dedee

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I just wanted to say "good luck". I think you may be in a better position...you can continue on with USF and if down the line you want to go back the Dr. B. route you'll have two perspectives and an extra set of eyes. Sounds like a win-win. So nice that your husband is being proactive and involved.

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