tpotter

We've had a horrendous time with our local BCBS plan, and now is the time for us to be able to switch to an Aetna plan if we choose. Does anyone have experience getting IVIG/PEX for their children through Aetna with a diagnosis of Immune Deficiency? Thanks.

After my experience at work this year (at least 5 of the 16 I treat are suspected of having PANDAS...at my suggestion of having them tested...and they appear to have other issues, such as Autism, Trich, etc.), I am willing to bet that there were other undiagnosed PANDAS kids at your class! Just a thought!

Last week when my DH and I went to see Dr. B. (the boys had already been), I spoke with him about treating my DH and both my DS's for MycoP. My IgM and IgG were significantly elevated, and I suspect I have been battling MycoP for years. My DH's IgM was borderline elevated, and his IgG was quite high, and both my DS's (both have PANDAS) IgG were quite high. I told Dr. B. that I felt it was probably going back and forth in our family, and pointed out, too that the comment on the lab test was that elevated IgG does not tell you whether or not the infection is current or previous, just that there are antibodies to it. I asked him to treat the entire family, and he agreed to do so. I really think it depends on the doctor, and even more than that your family's circumstances, and how you explain it. That's really just my thought.

I've heard that Dr. B. uses gammaguard.

Dr. Tanya Murphy published an article where she noted that kids with PANDAS do not respond the same to SSRI's. In fact, the SSRI's can make the behaviors worse. I found that with my son. Could it be that the Clonopin is causing an adverse reaction? I took my son off all that stuff, because it either did nothing, except take away his appetite and/or make him nauseous, or made him worse (in one case, he took a metal pipe and swung it at my head...in a split second! Once we got him off medication, all his symptoms improved.

I would definitely start him on azith. I would also have him tested in a few days. I figure that I'm alive today, because I realized 3 years ago when my asthma became uncontrollable (and it was with a bad cough all that time) that azith was the only thing that worked for it. As my doctor at that time (no longer my doctor) kept arguing that there was nothing wrong with me, I would always manage to get azith (after trying other stuff he insisted on, and it didn't work), and my asthma and cough would get much better (but the cough never completely went away.) I even went to 2 different immunology groups with several immunologists each, and no one could figure out why my asthma was not under control (they wanted to put me on some heavy duty medication, that could have killed my liver, but luckily my IgE levels weren't low enough for insurance to pay.) Fast forward to 1 1/2 months ago. I scheduled both DS's to see Dr. B., and decided I'd give him a try for me, too. My MycoP IgM was 1750 (double what it should have been), and my IgG was 250, while my boys' IgG was around 260 each! Turns out later that I insisted my DH get tested, and his IgM was barely normal, and his IgG was over 250! He's been getting treated for RA, but his rheumatologist was convinced it was RA (so why was he treating him???) DH has Lyme!!!!! (per my insistence that he gets tested...Quest WB came back +), and he is now seeing Dr. B., also! We have an appointment with Dr. Biels for the end of the month for all of us. But, moral of story...GO WITH YOUR GUT...take the azith, and then see a good doctor, and make sure about the dx, because if it is mycoP, you will probably need to tx longer than the typical few days (I've been on Azith now for over 1 1/2 months, and the cough is finally starting to go away.)

I would definitely start him on azith. I would also have him tested in a few days. I figure that I'm alive today, because I realized 3 years ago when my asthma became uncontrollable (and it was with a bad cough all that time) that azith was the only thing that worked for it. As my doctor at that time (no longer my doctor) kept arguing that there was nothing wrong with me, I would always manage to get azith (after trying other stuff he insisted on, and it didn't work), and my asthma and cough would get much better (but the cough never completely went away.) I even went to 2 different immunology groups with several immunologists each, and no one could figure out why my asthma was not under control (they wanted to put me on some heavy duty medication, that could have killed my liver, but luckily my IgE levels weren't low enough for insurance to pay.) Fast forward to 1 1/2 months ago. I scheduled both DS's to see Dr. B., and decided I'd give him a try for me, too. My MycoP IgM was 1750 (double what it should have been), and my IgG was 250, while my boys' IgG was around 260 each! Turns out later that I insisted my DH get tested, and his IgM was barely normal, and his IgG was over 250! He's been getting treated for RA, but his rheumatologist was convinced it was RA (so why was he treating him???) DH has Lyme!!!!! (per my insistence that he gets tested...Quest WB came back +), and he is now seeing Dr. B., also! We have an appointment with Dr. Biels for the end of the month for all of us. But, moral of story...GO WITH YOUR GUT...take the azith, and then see a good doctor, and make sure about the dx, because if it is mycoP, you will probably need to tx longer than the typical few days (I've been on Azith now for over 1 1/2 months, and the cough is finally starting to go away.)

Check with the doctor. But, more than likely it's either not enough calcium or potassium. Good luck.

[Could the stomach problems be related to PANDAS? It is possible for strep to be in the gut. Also, have you checked the possibility of celiac or even gluten intolerance (not necessarily celiac.)

OK guys...I just found out what "employee" of BCBS means. She came from a part of the company called: "Infomatics." The person telling me that has no clue what it is, and can't explain why it's ok to use a non-medical person to make a medical decision! I asked for a copy of the policy, and also asked her to find out what the h... "infomatics" is (I didn't use the "h" word...I just needed to put it here!) This is completely insane.

[i know I've said it several times, but as a pediatric OT who works with very young children (0-3 mostly at this time), I currently have on my caseload 5 kids who I suspect may have PANDAS (I only have a total of about 18 kids, so that's a pretty significant percentage). This is based on symptoms, significant parent history (ARF, Lupus, Lyme, etc.), and the fact that I have personally seen 3 of these kids deteriorate when ill and get dramatically better when on abx. I have helped one family get the test kit from Dr. C. (after having described the symptoms to Dr. C., and she believes it's PANDAS), I wrote a letter to another child's pediatrician, describing what I have observed clinically, and I just gave another family Dr. C's contact information, and told them to use my name (the child got sick again today, and he was back into his OCD...even mom had to say, "what's going on here?" (Another child's family refuses to believe, but I did give them information prior to her discharge from services, and yet another I just started working with, and it's only a slight suspicion so far.) I do not have a particularly unique caseload...I get autistic kids, as well as kids with orthopedic and other problems, and I have just as much of a chance of getting these kids as any other OT in this area. There is no question whatsoever in my mind that this is NOT a rare disorder. Something is going on, and I truly believe that Autism and ED will be blown out of the water. It can't happen soon enough, in my opinion. And, I know how you feel about your local pedi, because I have switched 3 times in the past year, and I am currently having an email conversation with him about "choosing" whether to give my kids abx or antifungals for yeast, because he can't do both together,and he truly can't get the concept of the fact that my son's weakness is not due to something that PT will help, but rather that IVIG/PEX and the right abx and Nystantin can help. It's horribly frustrating, and even as much as I know, I can't get all the help m kids need, and I have to fight for virtually everything I can get for them! Keep fighting. Thank goodness for this forum.

2. I would think the recent changes (i.e., Mental Health Parity Bill) would have nothing to do with this particular situation, as nothing in your claim would have anything to do with mental illness, on top of which, now what we can actually THANK that bill for is the fact that any therapy, psych visits, etc. our children attend is covered to the same extent and in the same way as their visits to the pediatrician, the allergist, the immunologist, etc. Actually, thanks to BCBS' desire to "create" diagnoses for my boys (without examining them...hmmm...is that even legal?) they are diagnosed with "psychiatric illness" (my response was it is NEUROPSYCHIATRIC, but they don't care. I'm also ready to report the doctors who "created" diagnoses for the insurance company to our state licensure board. If they're going to just "go along" with what BCBS is demanding (e.g. refusal to pay on all accounts), and then create stuff to try to get out of it, they have to be responsible. I will also check out the advocates that one of you guys sent. Thanks for all the suggestions.

It could have something to do with the vestibular system. I work with a lot of sensory kids, and one of the things that helps calm many of them is holding them upside down, doing somersaults, etc. By the same token, I can usually tell that these kids have ear infections when then won't put their head in a down position (even when I try to hold them upside down.) I've been right every time I've suggested to a parent to get their child checked for ear infections.

I would think a janitor would have made a more compassionate, wiser decision. You're probably right! But, I still think it's interesting that she gave me the names of the other doctors that she mentioned...just not the "employee."

Yes, I'm very serious. 2nd level appeal, they actually made up diagnoses (didn't even examine my children before they "created" 4 diagnoses that they didn't have. They conveniently left off pieces of information that was advantageous to denying us, and they even messed around with what the doctor said. They also keep having surgeons, etc. review for immunologists, and apparently an "employee" of BCBS was a voting member on our committee (I asked for the names of the doctors who were on the committee.) They gave me the names of the 2 "medical directors" (a surgeon and a psychiatrist), but didn't give me the name of the "employee." I'm not sure what they mean by an "employee." Do you think they actually meant that they took a janitor or something to make up the 3rd voting member? I spent 6 hours yesterday writing up a response to what they wrote, but it's very obvious that BCBS still won't approve. I repoted it to the state insurance commission, and have been told by them not to send in any more information. There are 20 complaints ahead of me, they don't make medical decisions, and besides, BCBS hasn't bothered to respond to their request for information. When she's ready to get my side, she'll ask for it. Anyone else having the same experience with BCBS, and want to go into a class action suit? We even have a dx of Immune Deficiency, and my guys are really, really sick! I wonder if this has anything to do with the healthcare changes that just went into effect.

Thanks everyone. Apparently band 41 is the flagylen (or something like that)...the tail of MycoP, which really makes sense, because my whole family has been exposed (high IgG),and I have very high IgM (my husband's is very close to above the normal range, too.) Got a appointment with Dr. Beals for the end of October for the whole family, but since I want to get in sooner, I'm going to see if he can do 2 & 2, and my DH and I will go down separately with the boys. WB only for Quest is: code 8593 (I spent 1 hour at the lab on the phone with the doctor's office last week, trying to get it clarified for my boys...they were trying to do the Elisa again, which is a standard practice these days. What they do is get the antibodies (they don't call it an Elisa, but it is exactly that), and if it comes back equivocal or positive, then they do a WB. You have to be very careful about that. They did it at LabCorp on me, and I had specifically asked to have the WB only (they're now supposed to be fixing it for me.) [

Oh how I totally agree with what you're saying. We've been through denial after denial for the past 4 months (but should have actually gotten tx 6 months ago. I am so frustrated and sad. I have even started crying on the telephone when talking with these people. I think I've figured out that they deny just because they know they can get away with it in the long run unless you have the money and time to fight them through the court system (our State Insurance Commission told me I should hire a lawyer. When I told her that I had spent $30K on a lawyer to fight the school district for 3 years, and didn't have any money left, she just repeated that I should hire a lawyer...I really don't think she wants to go to the effort.) Our insurance company just upheld the denial on a 2nd level appeal, even though Dr. B. is trying to treat for an immune deficiency (they're still claiming that it's "experimental,"...there's no way that IVIG for immune deficiency is "experimental", and they know it.) I give your child an awful lot of credit. My son wrote a letter to his dr the other day asking for help. It takes a lot for these kids to feel as awful as they do, but still say and write as beautifully as they do. No one should have to suffer as much as they have been suffering. I think we should all keep each other in our prayers, and just keep fighting this. I can't wait until the IVIG trial is over with the NIMH, because that will open everything up (unless insurance comes up with something else!)

Thank you Ellen's son. I'm going to show your website to my son, who is also 14, and also has PANDAS.

My kid's lyme tests came back, and I need to know what it means: On one of them, band 41 was reactive. On the other, bands 41, 58, and 66 were positive. What does that mean? Also, my doctor tested me, and although I clearly asked for them to go straight to the Western Blot, they did the Elisa, and it would have done the Western Blot if it was positive. But, my test came back as <0.91, which looks to me like it is "equivocal.", so I asked the nurse to have the doctor call me tomorrow. I also told her that I absolutely want the Western Blot. My DH's test results should be coming back soon (I actually gave him the code for the WEstern Blot, vs. the other one, so it should be getting done right.) We're seeing Dr. B. next week (my DH and myself...my kids have already been there,) because we've both got stuff going on. But, I'm also going to make an appt. with Dr. Beals tomorrow, and followup that way.

Sylvia, I couldn't have said it better myself. That's why the Tomatis program is still around. It was the first one, and yes, there are kids who need it, because it is tailored for the specific child. It also works with children who have psychiatric disorders, whereas the Listening Program does not (it works extremely well, though with Sensory Processing Disorder and Autism.

I am trained in using The Listening Program, and it works very well for the right kids (that's really the key to it.) The Tomatis Auditory Integration program is sort of similar, but way more intense, and most kids don't need it to be that intense (usually one of the other home-use programs such as The Listening Program, Therapeutic Listening, etc. work just as well...if it's going to work. For those of you wondering what it is, it is a program that the person listens to music that is filtered in a variety of ways, and it helps retrain the auditory pathways. This can help with auditory processing and sensitivity, as well as can help improve speech, and I have also seen it help desensitize the child in other areas of sensory processing disorders (by calming one system, it helps the other systems calm down.) Anyway, it really depends on what is wrong with the child, if it is going to be an appropriate program, and needs to be evaluated by someone who is trained specifically in the use of that program. PM me for more information if you are interested. I assume that you are already working with someone, which is good. Melanie

Very, very interesting.

Have you tested for MycoP? When I went on a large dose of azith 1 1/2 months ago (mycoP IgM and IgG were extremely elevated, and probably had been doing that for the past 2-3 years), but asthma got way, way worse than it ever had been...and it was really bad before that. It took awhile, but finally improved (still bad, though,) and we are now doing the next step by getting a western blot on everyone in the family (or at least trying to...through Quest...they like to try to sneak the Elisa through, and only if it's positive do they do the Western Blot...I just found that out today, and spent 1 hour on the phone at the lab while waiting for our pediatrician to change his mind, and go straight to the Western Blot.)

I am so sorry for you, but do have a suggestion that might help. First, outline everything you wrote below...break it up into before and after IVIG, and then what just happened. Is insurance paying for the IVIG? If not fight them. JayJay just got the CT State Insurance Commission to overturn her insurance company's denial for PANDAS. I just had a 2nd level appeal today for our insurance, but we are going in as immune deficient. I don't know how it will turn out, but if they deny it we have an excellent case on our hands, because I documented how many absences my boys had, number of doctors' visits, dignoses (which were all strep and/or bacterial), and essentially proved that they couldn't fight off infection. That's what your documentation above will show. Plus, if your insurance is like mine, in order to get anymore IVIG's (after the first), you have to document improvement (I read the "rules" in detail last night.) It certainly sounds like IVIG works, but you very well may need more than one. If you haven't been seen by an immunologist, I would HIGHLY recommend that you do (we were seen a group of immunologists, and they didn't know anything about what to look for, like Dr. B. did...it's more complicated than regular immunologists know...they go by the book, and don't add up all the pieces. PM me, I might be able to give you some more advice (even though I'm currently fighting insurance, too), but I also have a child just entering HS, and another just finishing h.s., and both have had PANDAS a very long time. It is different for us than for the younger children who have just been diagnosed (nothing personal...just a different picture altogether.) I'll pray for him. I totally understand what you're going through, because we've totally been there (and still are at times.)

You're welcome. My DH was going to see Dr. B, and I was going to go for a followup (my DH about his non-responsive RA, and now the positive MycoP), and my about the MycoP and asthma. We had appointments for 2 weeks ago when my boys were supposed to get IVIG, but insurance is still fighting us! So, I cancelled the appointments, but I think we may have to drive up there by ourselves if it doesn't get approved for the boys on Tuesday (2nd level appeal.) I want to talk to him about everyone in the family getting treated for MycoP, because I'm quite positive that in our case, I keep getting MycoP (just didn't know it before this), treating short term with azith (it was the only thing working), then it went back and forth to my whole family over and over again for the past 3 years (that's how long my asthma has been out of control!) I also want to talk to him about treating with Lyme meds (which are similar to MycoP meds), and maybe he can ask Dr. J. or someone their opinion on the whole thing, since there are so many false negatives and positives with Lyme testing.) Given my family's history, I really think it would make sense, even if the Western Blot comes back negative. The problem with Igenex is that it might be a little more specific, but it is not failproof (even they admit that), and there are just too many false positives and negatives. Also, one more thing, concerning MycoP testing. Many doctors say not to tx elevated IgG levels, because they think that it only means that there was a previous infection, and that they don't still have it. Well, I read the comments that came with the test, and it clearly states that the IgG levels DO NOT differentiate between current and previous infection! That's why I want my whole family treated. I know that if Dr. B. says to treat, our pediatrician will follow his directions (took 3 pediatricians to find someone finally willing to listen), and my PCP certainly won't have a problem. My husband's PCP may refuse (I switched from him years ago, because I got fed up with him telling me I wasn't really sick, and didn't need abx (I'm sure I already had the MycoP.) The only reason he tested my husband (and they didn't even know how to order the test , was because I told my husband to tell them that I had it, and that both boys also tested positive for exposure! But, his dr. wrote on the results that it only means that he's been exposed, but doesn't have an active infection (even though they wrote right next to the explanation saying the opposite!) I have to tell everyone...thank you so much for being part of this forum...I can just say all these things, and no one thinks I'm crazy