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matis_mom

Too many options... HELP

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After our summer vacation, I'm getting back to trying to figure out the root cause of DS's problems, and I went too far in seeking alternatives!

So now I have too many appointments lined up, and I need to figure out which way to go. This is the run-down:

 

Dr. Latimer (early Sept), we've been seeing her for almost a year now, but plasmapheresis got postponed because of insurance (1 hour away) Out of network but we get reimbursed almost 90%

Dr. Boubolis (late Sept), new patients there, trying to get to the bottom of the immune problem, but it's a 6 hour drive! IN Network!!!

Dr. Salisbury (late Sept), immunologist at UVA, not sure if he has PANDAS experience, just going for the immune part (1 1/2 hrs) IN Network

Dr. Beals (late Sept), MD/naturopath, covers Lymes and PANDAS, about 2 hrs. away, hoping will help figure out the Lyme question. Out of network, only 70% of reasonable and customary covered.

And there is a local MD/naturopath someone recommended, but I haven't contact them yet.

And there is the nutritionist/naturopath, who wants to take ds off on antibiotics to do a GI analysis... No insurance coverage, wants lots of out-of-pocket tests, will probably just run the food sensitivities analysis through him and then pick an MD to work with.

 

So yes, this is NUTS. DH thinks we should just do Dr. Bouboulis, even though he is far. I still think we need someone to help us figure out if there is Lymes (does dr. Bouboulis cover that?). And what if Dr. Bouboulis wants to do IVIG? We can't go back every month. Can he prescribe to have it done locally? How is the follow up for out-of-town patients?

 

My head is spinning, someone please help! DS is maybe functioning at 60% right now (as in 40% away from normal) after I had strep. I really do not want to do another steroid course, since he is turning 13 in October. But I see him struggling with his thoughts, spending too much time in the bathroom, and overall a bit anxious/OCDish.

 

Isabel

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I am so sorry to read that insurance blocked your access to PEX. I would keep working with Dr. Latimer on that solution. Our ds14 had catastrophic PANDAS that "came out of the blue" in January 2010. He had PEX this July. The healing process has been so SLOW that I have not posted much about it. However, today he said to me, "I think, maybe, just a little, I am starting to feel better." What a blessed thing to hear!!! (He had no life at all at his worst. He was a "14 year old version of Howard Hughes.") I would not discourage the other things that you are doing but I would never give up on PEX. Hope to be reading about "progress" for your ds soon!

P.S. I have a friend who is having very good results with IVIG with Dr. B. for their PANDAS child.

Edited by RNmom

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I am so sorry to read that insurance blocked your access to PEX. I would keep working with Dr. Latimer on that solution. Our ds14 had catastrophic PANDAS that "came out of the blue" in January 2010. He had PEX this July. The healing process has been so SLOW that I have not posted much about it. However, today he said to me, "I think, maybe, just a little, I am starting to feel better." What a blessed thing to hear!!! (He had no life at all at his worst. He was a "14 year old version of Howard Hughes.") I would not discourage the other things that you are doing but I would never give up on PEX. Hope to be reading about "progress" for your ds soon!

P.S. I have a friend who is having very good results with IVIG with Dr. B. for their PANDAS child.

Thanks for the reply. We are still pursuing PEX (and we are definitely keeping Dr. L as our main doc), but I just want to make sure there is nothing else in the picture (ie. immune deficiencies or Lyme). Good to hear your son is improving, albeit slowly!

Hope to be posting soon with good news!

 

Isabel

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Well, I'm biased becasue we see Dr. Bouboulis and I just love him and I feel he's well worth the 6 hour drive we make from Maine. He has begun doing the IGENEX lyme test on his pandas patients plus he does this massive amount of testing to find the route cause of the infection. He is very thorough.

 

Initially, we went back for a follow up visit 4 weeks after our first visit to go over lab results and then he ordered ivig for my dd who failed her pneumococcal titer panel and had a high C3d as well as classic pandas symptoms. Then after her first ivig we went back a month later for a follow up. then she had a second ivig 8 weeks later and he thinks we are on the right track and we don't need to see him again till her next scheduled ivig. (8 weeks from the last one)

 

I do know a family who saw him who is having ivig done locally due to insurance purposes but since my insurance covers Dr. B I prefer to continue seeing him, despite the drive, because I've finally found someone I trust and that means more than you can know. It just feels better than you can know to have someone on our side that feels confident that they can help you. And so far what he is doing is working.

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Ditto. We also have been working with Dr. L. over the past 1 1/2 years, and will continue to do so. I also wouldn't give up on PEX if it is an option. But, as many of you know from my posts, we had everything fall apart repeatedly since March, and I finally started doing the route you are doing...making an appointment with everyone to find someone who could finally get it through.

 

Dr. B. is a great choice, because yes, he is extremely thorough. How many times did I go to local immunologist/allergists for both my boys and myself (I have had uncontrolled asthma for 3 years, and kept telling them that azith was the only thing that would stop it, besides prednisone giving me relief.) Dr. B. not only found that my boys had been exposed to mycoP (high IgG), and their C3D was through the roof (32 and 84), but I was apparently, at least the partial cause of their mycoP exposure (high IgE!) When he called to tell me, my response was: "Well, that could certainly explain my asthma, and why azith was the only thing that worked." He laughed, and agreed.

 

I have now made an appointment with him for next week for my DH who has terrible RA..uncontrolled for 4 years, and I bet he finds the reason (I suspect there may be an RF connection.)

 

Dr. B. does go the Igenex testing route, but I don't think he is a LLMD (although my understanding is that he can make recommendations.) We have decided not to do the Igenex testing (even after we got the blood drawn) at this time, because we just can't afford it at the moment, and Dr. B. agreed that for now we should do IVIG (after he found other sources of infection, I figured let's rule this out piece by piece, because there can be false negatives and positives.)

 

But, I do agree with you about staying with Dr. L, I would recommend going to Dr. B. also, because he is so very thorough, and I don't think you'd be disappointed, and keep the appointment with the LLMD. You can always cancel.

 

Good luck.

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Thank you, thank you, thank you ladies! That is exactly what I wanted to hear. So we'll see Dr. Bouboulis, and I will postpone the visit to the LLMD (just to give it time to get the bloodwork results back from Dr. Bouboulis. Cancel everything (except for Dr. Latimer). That sounds like a good, reasonable plan.

 

I don't know what I would do without your help :)

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We also see Dr. B. for PANDAS and Lyme. We are only 90 minutes away from him though :) He is treating my son for Lyme but he also suggested finding an LLMD for further treatment. We are seeing good results so far but I am still looking to make an appt with an LLMD. I do feel Dr. B. is very thorough and truly listens to you. We are holding off on IVIG for now but if we go forward, we will do it with him.

 

Our integrative dr recommended getting an immunologist on board and since Dr. B. is close and also treats PANDAS, it made sense to see him.

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    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


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