coco

Oh, Jill, your post brought back memories of our flight home from Chicago after ivig with Dr. K!....Our flight was also delayed and as we were standing in line getting ready to board my dd says, "Mommy, I feel like my head is a big blister!!" Yikes...here it comes. And once we became airborne the vomiting started...nonstop! Luckily, I had packed gallon size ziploc bags in my carryon and whipped 'em out and stuck my daughter's face in it..no splish-splash and odor (sorry so graphic!) and kept switching the bags! About halfway through the flight (we had to circle over NY for another 45 minutes because of thunder storms, too)...I kinda got the urge to purge myself after watching her do it for over an hour and made my hubby switch seats with me and take over! I will never forget that...eesh!

I'm sorry, I thought you were posting about Pandas exclusively...I don't know what to say about the dosage for hearing loss. It may well be that you need both AM and PM dosages. My husband happens to be on prednisone for poison ivy and he takes it in the AM and PM also, so I think I would follow whatever your doctor advised to save your child's hearing. Best of luck.

Agree with Stephanie...Dr. K and Dr. B say to give the steroids in the morning only.

Yes, if my dd should need another ivig it will be without the IGA in it...even though this risk may be minimal. I ask myself, "why would I take any unnecessary risks? She's already been through the ringer!" And these doctors are all good doctors, that is the scary part, that even the brightest overlook things or assume. First, do no harm...right? The fact is that the doctors who where giving ivig never even tested her IGA, it was another physician who caught the deficiency. Once the nurse looked at her IGA numbers she immediately said that this child should never have received gamma with IGA in it and "blessed" the physician who did catch it.

Well, the unthinkable happened. My dd has received 6 ivigs to date, one high dose, 4 low dose and one high dose. Neither physician administering tested for an IGA deficiency, and since the chances are very small and all seemingly went well during the procedures, I really did not give it much thought. It took two other physicians to run IGA tests while performing their own screening process for Lymes and MycoP....low and behold SHE IS ONE OF THE FEW WHO HAS AN IGA DEFICIENCY! She could have gone into anaphylactic shock and DIED!!!! When I spoke with the nurse today and asked her to look at the file she immediately was shocked to see this and admitted that my dd had "fallen through the cracks." And I didn't get my dd's ivig at the Jiffy-Lube, if you know what I mean!! Now I am wondering if we impeded any progress she could have had because of this, as her poor body had to struggle with this as well. It literally makes me sick to my stomach. It only goes to prove that we as parents must be overly vigilant is treating our children and NEVER assume some else has everything in control...EVER!

Yay Dawn! I am so glad you went ahead with your instinct! Hopefully you can see big changes very soon!!!

I believe you are correct to question that "Ignore that mycoplasma, it's old" comment. I have posted on this before, but Dr T encouraged us to treat my dds mycoplasma, based on the very high IGG (past infection) >5.00. Her IGA (current infection) number was 474, normal <770. So after one month on biaxin her IGG number remained unchanged, obviously. However, her IGA dropped to 304, down more than 170. And symptoms really began to improve concurrently. We have a high probability of Lymes as well and feel that the biaxin is treating both. About 2 weeks ago she had a chest rash for about 1-2 days, now gone, some nose acne, and last night she had horrible, very foul green stool. Altho this could be a yeast reaction I am now inclined to think it is part of a herx reaction. Her stool was tested 2 weeks ago and all came back ok. She is on 50 billion probiotics daily. If this is herxing it is nerve-wracking to say the least, because it looks like a pandas mini exacerbation. Dr T believes that 90-95% of all high "past infection" numbers are just that...past infection/exposure/antibody evidence, BUT NOT with mycoplasma. I know there are a lot of docs who do not treat old mycoplasma, but I think Dr. Lin and Dr. T are right.

My dd has been on Biaxin for about 6 weeks and when she takes it I always have her drink a full bottle of water right after, and never on an empty stomach.

My dd10 also has what looks like may be acne at first pass...reddish bumps as emerging little pimples on her nose and sides of her nose. Then it seemed to be another bout of impetigo, which she just has 3 weeks ago on the tip of and under her nose. It's hard to tell what this is right now. I will see if it starts to get oozy and get it swabbed. What is so confounding to me it that she has been on abx for so long, most recently biaxin and if this is strep I am @#%$^@%!!! Her titers are now for the first time normal in almost a year.

Alex, beautifully written! I am so glad you took the time to rebutt! I always say to the "doubters" out there, "Yeah, and the earth was flat until it was round!"

I am so sorry to hear of this deterioration. It is heartbreaking. My dd has been on Biaxin for a little more than a month now and is doing well, not 100%, but steady improvements. I spoke with Dr. B about the dosage and the length of time it was safe to be on it and he said that it was no problem to be on it for as long as you'd be on azithro, augmentin, etc. She is on 1 tsp in am and 1 tsp pm, she weighs 63 lbs. I would return to the Biaxin and see if you can get her back. Dr B thought the Biaxin was really helping the Lymes, and Dr. T prescribed it specifically for the Myco. Frankly, I don't know which it's helping more, I just want it to HELP! Here is a copy of a post from a week or so ago on our experience with Biaxin and coinfections: --------------------------------------------------------------------------- I have been meaning to post on this but you know how it is, trying something new, holding your breath to see if it works, gets worse, jinxing... My daughter had her first high dose with Dr K last August. We went to him because he was the doctor who had treated the most children. Simultaneously we consulted with Dr. B to have a local immunologist on board to follow Dr. K's protocol, advise and guide us on immuno issues, etc. My daughter was one of his first pandas patients. He was helpful and committed to recovering her. With that said we continued on with monthly low-dose ivig to help her SAID. After 4 months she looked much better "on paper" but behaviorally she was stuck. Never getting better and even slipping further back with each infusion. Dr. K advised us to stop doing the monthly low-dose, as it simply stirs the antibodies and you are perpetuating the pandas symptoms. In our case this was true. In February she had another 1.5 dose. The next 4 weeks were horrid. Week 5 the horrid began to level off somewhat, week 6 better still, but by week 8 she was bad again, not as bad as the first 4 weeks but we felt it was not working for her. After all I had been reading on this forum about co-infections impeding ivig success we then saw Dr. Charles Ray Jones, pediatric Lyme's specialist, who ran a ton of tests on her that had never been run before. She came back with rock-bottom low normal thyroid, strong possibility of Lymes, and past mycoplasma. Her IGG was 5.00 (range >5.00 H, <.90 normal) and IGM 474, with <770 normal range. Dr Jones wanted to treat the possible Lymes with Minocycline for 30 days. Dr. B agreed. Dr. K in Europe. They did not feel that the mycoplasma was a big deal, just a past infection. We consulted with Dr. T. He absolutely said to treat the mycoplasma and prescribed Biaxin for 30 days. Four good doctors. Two confused parents. We opted to do Biaxin, not minocycline. On day 9 of Biaxin a girl who was so riddled with OCD questioning/statement rituals for much of the day had a perfect day. And day 10 was almost as perfect, and 11 and 12. Now we have some blips but they are shorter and less intense. We strongly feel that it was the Biaxin that pushed her through this and maybe treating this will help her healing take hold. She cannot be on this forever, as Dr. K later consulted, and we realize that. And we are past the purity of the theory of "if you try too many things at once you won't know what works" stage. We just want something to work and stay working. Now maybe, just maybe, the ivig can do what it is supposed to do with greater ease. We shall see.

That is amazing! And it correlates with how ivig and pex is supposed to work with shutting down the production of T cells in the bone marrow and infusing with good antibodies. It seems like the transplanting is more of a direct way to do this and ivig and pex work along similiar pathways, albeit slower???

Hi Bronxmom - I am so sorry to hear about your beautiful son. I have been tempted to do another since our last in February, but after speaking with Dr. K several times over that past several months he has talked me off the ledge and convinced me to wait. The brain needs time to heal and healing is rough, for sure. You may be just stirring up the antibodies again and again. I know some folks have had good success with ivig every 8 weeks, and others are better off waiting. I would be inclined to wait it out. If you haven't checked for Lymes with IGENEX I would not discount that it may be an issue. Mycoplasma, too, current or past infection. These coinfections may be keeping the ivig from doing its thing. Ask Dr. B about switching to Clarithromycin (Biaxin) for thirty days to see if it helps. I told him last week that it was helping us after being on azithro for 6 months. He agreed that clearing the co-infections were important prior to doing another ivig (if still needed).

Hi Betty - I agree with all the others...get in touch with a good Lyme's dr. We live in CT and my dd tested positive for band 41 and IND on two other bands and our lyme dr (Dr. Charles Jones) said to definitely treat for it and recommended an alternate antibiotic. I think that these co-infections hold the healing back for pandas so it is critical to get rid of those. Good luck!

bmom - things started to noticably improve on day 9 with Biaxin.

Santi - what's "a long time" according to Dr. K? I don't mean to get too literal, but I am anxious to have her cleared of it, and I was under the impression from Dr. T that 30 days ought to do it.

Hi tired Mom - We, too, are on Biaxin for myco from Dr. T and it has been a big gun for my dd. We are in the third week of a 30 day. I also wonder if she will slip once we are done with it. We will go back to Azith once it's done and see what happens and also add minocycline for the strong possibility of Lymes as well for 30 days. I have my doubts about the minocycline, but Dr. Jones (pediatric lymes specialist) wants her to try it. What were your dds myco IgG/IgM numbers? Is Dr. T also weighing in? He's the one who really helped us out with the myco. I didn't think that it was great to be on Biaxin for a long period of time...hard on the liver?

Our conversation with Dr. K re: myco was very brief...we took a chance on calling him the day after he got back from Europe and came to the phone and gave us 10 minutes. Mostly we discussed doing or not doing another ivig. and how my dd was doing 12 weeks post. He was fine with treating and didn't weigh in one way or the other in any detail, but again, the conversation was very short. I give the trophy to Dr. T for this one...he really is all over myco and what it can do. Dr. T told us that the IGG scale on the report only went up to 5.00, (my dds number) and the actual number could be much higher, so he treated based on that. I used to be in love with prednisolone, now it's biaxin...I hope it won't love me and leave me!

You are welcome. As I sit here I am still shocked that she is doing soooo much better and continuing to improve after being on this. We are at 2 weeks now and 2 weeks to go. This is the kind of improvement I hoped to see since last August.

You're a great, Mom...your strength is amazing! I am so hopeful this will help Allie!!

So I spoke with an attorney for about an hour today. Very tedious getting into all of it "from the beginning" and explaining Pandas. He only heard of Pandas a month ago from a colleague but was very eager to learn more about it since he was sure I would not be the last. (Well-respected education firm recommended by a friend who has a son with disabilities.) I gave him the Pandasnetwork site, this forum, Dr K's web, Pepsi Refresh, etc. and was interested in getting up to speed and welcomed ongoing info. He wholeheartedly agreed that even IF dd was a willfully misbehaving child who was diagnosed with WHATEVER that those measures should never have been taken. But, since the school year is almost at an end, perhaps opt for continuing home services, continue to heal our child, have a good summer (oh yeah) and get a plan in place for the fall. He said we may even want to continue home services starting in Sept if the district easily honors our request to keep that option open. He was giving me the typical lawyer advice of asking for an independent psych evaluation...to which I said "where am I gonna find a psych who knows anything about how to do an eval on a kid who has pandas and come up with "oh yeah, she has pandas." He agreed. Trouble is we (all us pandas parents) have to educate everyone along the way as we fight for our children, it is our common sense and sweat that is spent on getting these people educated. It has to be done, but our energy is low. In light of the fact that there are so few "experts in the pandas field growing on trees to advocate" for the time being we need to rely on our treating pandas physicians to help us out here. I was kind of in the mood for a more "sharky" conversation, given my anger...remember the Cowardly Lion in the Wizard of Oz....? "Hippopotamus??...I'd rip 'em from topus to bottumus? What puts the Ape in Ape-ricot?? Courage!!" He did say he would be happy to get involved depending on what we decided to do. I've got a growl in me somewhere, but I can't find it right now.

Ohhhh, I would go back to that office and park my sorry self there! You had an APPOINTMENT, right?!

Yes, she has an IEP, and shockingly she has mastered most of her goals despite struggling with pandas. The issue regarding behavior comes down to their interpretation of what is pandas behavior and what is within her control. No one can answer that. How about we all try to HELP her constructively instead of punishing her and then seeing what is left to deal with afterwards? They think it's all in her control. We have worked with them in an open, fair way from the beginning in the hopes that it would all be handled with sensitivity and enlightenment. Their innuendo and skepticism and have destroyed that now. Sadly, there is little hope on our part that after all our family has been through they really are able to accept what pandas does to her brain and how behaviors manifest as a result of it. They offer nothing up other than these draconian tactics. There is not even a "just suppose" she couldn't control most of them, how would she be treated approach. And if that snot-nose 23 year old non-mother behavioral therapist gives me the "look" of a blank stare as we, for the 100th time, explain this all yet again, I will loose it. Everyone's posts have helped us enormously, to help us validate the circumstances and awaken us to the obvious. We are getting an attorney.

I have been meaning to post on this but you know how it is, trying something new, holding your breath to see if it works, gets worse, jinxing... My daughter had her first high dose with Dr K last August. We went to him because he was the doctor who had treated the most children. Simultaneously we consulted with Dr. B to have a local immunologist on board to follow Dr. K's protocol, advise and guide us on immuno issues, etc. My daughter was one of his first pandas patients. He was helpful and committed to recovering her. With that said we continued on with monthly low-dose ivig to help her SAID. After 4 months she looked much better "on paper" but behaviorally she was stuck. Never getting better and even slipping further back with each infusion. Dr. K advised us to stop doing the monthly low-dose, as it simply stirs the antibodies and you are perpetuating the pandas symptoms. In our case this was true. In February she had another 1.5 dose. The next 4 weeks were horrid. Week 5 the horrid began to level off somewhat, week 6 better still, but by week 8 she was bad again, not as bad as the first 4 weeks but we felt it was not working for her. After all I had been reading on this forum about co-infections impeding ivig success we then saw Dr. Charles Ray Jones, pediatric Lyme's specialist, who ran a ton of tests on her that had never been run before. She came back with rock-bottom low normal thyroid, strong possibility of Lymes, and past mycoplasma. Her IGG was 5.00 (range >5.00 H, <.90 normal) and IGM 474, with <770 normal range. Dr Jones wanted to treat the possible Lymes with Minocycline for 30 days. Dr. B agreed. Dr. K in Europe. They did not feel that the mycoplasma was a big deal, just a past infection. We consulted with Dr. T. He absolutely said to treat the mycoplasma and prescribed Biaxin for 30 days. Four good doctors. Two confused parents. We opted to do Biaxin, not minocycline. On day 9 of Biaxin a girl who was so riddled with OCD questioning/statement rituals for much of the day had a perfect day. And day 10 was almost as perfect, and 11 and 12. Now we have some blips but they are shorter and less intense. We strongly feel that it was the Biaxin that pushed her through this and maybe treating this will help her healing take hold. She cannot be on this forever, as Dr. K later consulted, and we realize that. And we are past the purity of the theory of "if you try too many things at once you won't know what works" stage. We just want something to work and stay working. Now maybe, just maybe, the ivig can do what it is supposed to do with greater ease. We shall see.

You are doing what I think most of us are doing. And it is the hardest thing ever. Yes, yes, yes, researching, reading, calling, days totally comsumed with this junk. I know my hubby is just as concerned and deeply troubled about all this as I am, but he simply doesn't have the time to do what I do. I, too, wish the burden of all this was not squarely on my shoulders, but I try to see my dh for the valuable listening partner and sounding board for me that he is. He also is the calm in my storm and pulls me out of this pandas stuff when I let myself get in too deep. Maybe try and look at how the way each of you handles this individually can play on each of your strengths, balance each other out a bit, and lessen the burden for your family. Be strong! We're all here for you.