Seeing Dr. Bouboulis on Tuesday

[momaine]

Hi Everyone,

My dd (13) is one who switched from Augmentin and Zith to Biaxin because she had a high IgG for Mycoplasma. Because we had also started a Prednisone burst around the same time, it took a while to see if the good results we saw were from the Biaxin or the Prednisone. As our luck would have it, it was likely the prednisone as my dd's issues have grown worse, esp. the last few weeks. (was on biaxin for maybe 6 weeks) she's almost back to square one, pre-antibiotics. NOT GOOD!

 

I got a hold of Dr. T today and we switched her back to the Aug/zith. We see Dr. Bouboulis on Tuesday and I'm hoping that IVIG is in her near future. I''m hoping for a bit of a turn around with a recent prednisone burst and the change of antibiotics back to Aug. and Zith.

 

I'll take any prayers or good wishes anyone wants to send that we get IVIG as soon as possible and to have it covered by insurance would be a true blessing.

 

Wishing you all the best with your children,

Angela

[thereishope]

We'll keep her and your family in our prayers. Let us know how the appointment goes. From his interviews, it sounds like Dr B is very "pro-IVIG" (if you know what I mean) for PANDAS so I have a feeling he will prescribe it.

[ajcire]

Just curious. Is Dr. B a Pandas doctor? I was understanding it that he was an immunologist who was willing to treat pandas children with IVIG but really based on the pandas dr's recommendations? I guess I didn't think he would be the one prescribing it unless it was for an immune deficiency he saw? Maybe I am not understanding that right though?

 

 

 

 

We'll keep her and your family in our prayers. Let us know how the appointment goes. From his interviews, it sounds like Dr B is very "pro-IVIG" (if you know what I mean) for PANDAS so I have a feeling he will prescribe it.

[thereishope]

Huh, I honestly don't know. Yes, he an immunologist and in an interview he said he started seeing PANDAS patients at the request of someone from Yale. I would hope that if someone contacts his office or PANDAS Resource Network (where he is on the advisory board), they will share what steps a patient needs to take if ultimately their goal is IVIG with Dr B.

 

Good question!

 

Who wants to contact and find out the steps? I'd hate for someone to see him to find out they should have seen someone else first.

 

 

Just curious. Is Dr. B a Pandas doctor? I was understanding it that he was an immunologist who was willing to treat pandas children with IVIG but really based on the pandas dr's recommendations? I guess I didn't think he would be the one prescribing it unless it was for an immune deficiency he saw? Maybe I am not understanding that right though?

 

 

 

 

We'll keep her and your family in our prayers. Let us know how the appointment goes. From his interviews, it sounds like Dr B is very "pro-IVIG" (if you know what I mean) for PANDAS so I have a feeling he will prescribe it.

Edited April 11, 2010 by Vickie

[momaine]

Well, Dr B's office knows that we have seen Dr. T and knows what tests she has already had and will soon know that my dd has been on antibiotics for 5 months and we are now back to square one. In hind sight, I think the combo on Zith and Augmentin gave us steady slow results but the Biaxin caused a backslide that wasn't noticable right off due to the prednisone, which helped tremendously and which I am hoping kicks in again very soon. I've talked with Dr B briefly and he didn't tell me I was on the wrong track so I'm thinking he can help us.

Angela

[sf_mom]

He is currently helping many and already helped some with success. I wish you the best of luck and your daughter's full recovery.

 

-Wendy

 

 

Well, Dr B's office knows that we have seen Dr. T and knows what tests she has already had and will soon know that my dd has been on antibiotics for 5 months and we are now back to square one. In hind sight, I think the combo on Zith and Augmentin gave us steady slow results but the Biaxin caused a backslide that wasn't noticable right off due to the prednisone, which helped tremendously and which I am hoping kicks in again very soon. I've talked with Dr B briefly and he didn't tell me I was on the wrong track so I'm thinking he can help us.

Angela

[momaine]

Thanks Wendy.

 

Angela

 

He is currently helping many and already helped some with success. I wish you the best of luck and your daughter's full recovery.

 

-Wendy

 

 

Well, Dr B's office knows that we have seen Dr. T and knows what tests she has already had and will soon know that my dd has been on antibiotics for 5 months and we are now back to square one. In hind sight, I think the combo on Zith and Augmentin gave us steady slow results but the Biaxin caused a backslide that wasn't noticable right off due to the prednisone, which helped tremendously and which I am hoping kicks in again very soon. I've talked with Dr B briefly and he didn't tell me I was on the wrong track so I'm thinking he can help us.

Angela

[tired mom]

Hi Everyone,

My dd (13) is one who switched from Augmentin and Zith to Biaxin because she had a high IgG for Mycoplasma. Because we had also started a Prednisone burst around the same time, it took a while to see if the good results we saw were from the Biaxin or the Prednisone. As our luck would have it, it was likely the prednisone as my dd's issues have grown worse, esp. the last few weeks. (was on biaxin for maybe 6 weeks) she's almost back to square one, pre-antibiotics. NOT GOOD!

 

I got a hold of Dr. T today and we switched her back to the Aug/zith. We see Dr. Bouboulis on Tuesday and I'm hoping that IVIG is in her near future. I''m hoping for a bit of a turn around with a recent prednisone burst and the change of antibiotics back to Aug. and Zith.

 

I'll take any prayers or good wishes anyone wants to send that we get IVIG as soon as possible and to have it covered by insurance would be a true blessing.

 

Wishing you all the best with your children,

Angela

I will keep you in my prayers and hope all works out for you and your dd.