wornoutmom

I wonder if the "outgrowing" it thing came from observations of Tourette's syndrome, where many (but not all obviously) seems to "outgrow" their tics. Actually I found the Turkish paper to be uplifting in that the PEX seemed to still help even at the adult age - meaning it might never be "too late"!

Thank you!!!!!! We are headed to IVIG next week with Gammaguard and will be sure to check on the lot#s!

Peglem: So these "other antibodies" - is that the tubulin, lysoglangliosides and d1,d2? Just wondering because our Cam K came back at 167 but the only thing elevated was the D2, and it was still in the normal range (negative cotnrol was 2000 - ours was 4000). Everything else was negative. And can the D1 D2 be effected by psych meds such at Risperdal ?

Can someone help me understand this? If antibodies run out after 30 days, then how does IVIG seem to help long term (as Dr K would say)? Wouldn't this just give a reprieve until the next trigger infection hits?

Mary - I PM'd you with my phone number. Call me!!!!!!!!!!!!! -Rachel

It's a wonderful feeling to finally feel validated!

If you want to cross the border into Michigan, our neurologist has ordered IVIG for my son.

I will be sending in my donation to OU in honor of her son's memory. My heart truly goes out to her - I cannot imagine the vast loss she is enduring.

No problems using Google Chrome either.

Melanie - we are in Michigan. We are planning to have the IVIG done at a local infusion center because our insurance denied the claim and they are willing to sell it to us at cost ( thanks so much to the mom who posted about the Coram infusion centers!!). The neuro is not extremely experienced with this, but has used IVIG for PANDAS with some success - he says about 50/50 and wants to help. After some negotiation we arrived at a 1.5 gm/kg dose. He wrote for a repeat after 3 weeks, but we don't have to (and wouldn't) use it that soon. He talked about IVIG being no big deal with regard to side effects,but I know from this forum it can be kind of rough. He basically referred me back to Dr T for further PANDAS guidance, but is the only doc within driving distance willing to help and he has done alot of leg work with regard to appealing with my insurance. Of course, I am kind of freaking out about it because ds is no where near as bad as he was back in the winter when we were pursuing IVIG, as the Biaxin has seemed to tamp down his rage/terror attacks which were by far the worst symptom. He is still ticcing a bit, and is consumed with worry and needing to know what is happening and needing everything clean, and has had a few panic attacks recently, but he is way more functional than he was. And now he's added IVIG to his worry list...sigh.. Can I ask how much prednisone Danny used for the headache?

For those of you who have had IVIG done and your child developed a severe headache, did steroids help with this? If so, can I ask what was the dose? I am thinking ahead to our scheduled IVIG on the 14th/15th. The dr. prescribing the IVIG does not believe the steroid is necessary (or the antibiotics!) so I'm thinking of hitting up our pediatrician or Dr T for it for an "in case" situation, but don't really know how much to ask for . Thanks!

Son is 14 1/2 - diagnosed at 7, suspect it started age 3. It's never too late - and thinking it was got me off track 2 years ago during his worst exacerbation and onto the psych med/hospital merry go round. For the grace of his psychiatrist, Beth Maloney, this forum, and a few wonderful doctors, we are finally getting real PANDAS treatment and are up for IVIG in 2 weeks. Don't give up!!!

This can get bad for us too when ds in at his worst. I think for us its a "just right" type of thing. He has to have the "just right" snack but he doesn't know what it is. And also the decision making. When he was doing really bad this winter there were times he would just scream and scream "there's nothing to EAT!!!!!!!!!". Now he can just get "nasty" about it in a PANDAS/teenager kind of way like "There's nothing to eat because you never go grocery shopping" or he'll yell "get me some food!" and when I ask him what he wants he just snidely says "I don't know - FOOD!!!". And so I bring him something (which inevitably is the wrong thing) and he yells "not this! this isn't food!!!". Sigh... So then I tell him to get it himself and he yells "I can't - there's nothing ot eat!!" and around we go again. Now while he is older than your kiddos, I can say that I do my best to figure out what he will eat that he can get for himself and keep it on hand. We stock up on tunafish, easy mac and popcorn and peanut butter, and sometimes that's what he lives on!!

OMG - I want that stone tablet SO bad!!!!!!!!!!!!! I am busy trying not to obsess about this very question. My son seems to be improving on Biaxin, and each day that he makes some progress I question our scheduled IVIG (June14th) more and more. Then he'll have a panic attack or get "stuck" and I think we have to try it for his sake. But then I think maybe we just need to keep going with the abx. I think our situation is more confounded by the fact that our insurance will not cover it, and so we have to pay $12,000 for this and I wonder if we do it now while he's on an upswing if that might bring his baseline up higher in the end, or if we are wasting our 1 shot (we can't afford more that one at the moment...) and we should wait to see if things get really severe again like they were Dec-March. But then who wants to see him have to go through THAT again. But then if IVIG is not a "cure" but a cooling off, who's to say he won't go through it again anyway? I think I'm starting to understand how my son feels when his thoughts are spinning in circles!!!

we've done a 14 day course, a 26 day course and now up to 14 days again. We are in very much the same position you are with this. While I can't claim any where near the 99.9% better, I can say that since starting the 2nd course of Biaxin ds has only has one day of "exorcist" episodes in 2 months, and it occurred right as he was feeling sick again. 2 weeks ago my son had antoher sinus infection and went crazy on zithro for 2 days. As soon as we switched it to the Biaxin he felt better within hours and has made steady improvement since . I have an email in to Dr T asking about the long term side effects of Biaxin vs IVIG but haven't gotten a response yet. I believe that developing C.Dificile is the main concern regarding long-term use, and I believe this is the only one of the abx that has that listed as a side effect (perusing the PPR books in my drs. office the other day...). Meg's Mom: how would lyme keep the myco from getting eradicated? I guess I've just been operating under the assumption that myco p can just be extremely hard to eradicate, and like Sammy's strep, may need to be continually treated for years?

Uugh...I had just gotten calmed down about my son's scheduled IVIG appt. on June 14th, and now I'm all freaked out again. I'm SO sorry this is happening to you guys. I hope you find answers soon. I know you are working with Dr B, but I wonder if consulting a neurologist regarding his hands might be useful??

From Wikipedia: "An immune complex is formed from the integral binding of an antibody to a soluble antigen. The bound antigen acting as a specific epitope, bound to an antibody is referred to as a singular immune complex. After an antigen-antibody reaction, the immune complexes can be subject to any of a number of responses, including complement deposition, opsonization, phagocytosis, or processing by proteases. Red blood cells carrying CR1-receptors on their surface may bind C3b-decorated immune complexes and transport them to phagocytes, mostly in liver and spleen, and return back to the general circulation. Immune complexes may themselves cause disease when they are deposited in organs, e.g. in certain forms of vasculitis. This is the third form of hypersensitivity in the Gell-Coombs classification, called Type III hypersensitivity. Immune complex deposition is a prominent feature of several autoimmune diseases, including systemic lupus erythematosus, cryoglobulinemia, rheumatoid arthritis, scleroderma and Sjögren's syndrome. [edit]Ex" Not sure how it relates specifically to your child but I'll be keeping an eye out on this post to see if anyone else does!

Now THAT is a good idea!!!!!

So my son is not feeling well for the umpteenth time - truly it seems like the days he feels well are few and far between these days. About 2 weeks ago he was diagnosed with a sinus infection (after dh had double ear infection and other ds had a "cold"). He did 2 days of zith that made him crazy and we quickly switched over to Biaxin. Seems like he was feeling better until this Friday, when he starts complaining again of feeling like he's been run over by a truck, and his nose is starting to run. Well, I'm actually elated about his nose running because this kid NEVER drains out his nose - i'm thinking progress. But yesterday I notice that he is suddenly getting hoarse and more conjested as we're outside watching his brother's soccer game. When we return inside he's a bit less hoarse. The swelling inside his nose from the sinus infection is gone. But this morning he wakes up again with a runny nose, stinging eyes and hoarse,sore throat. So here's my question - it seems like this might be allergies. But he's been allergy tested and everything came back negative!!! Is it possible to still be allergic but not respond to the skin tests? Maybe a lesser allergic reaction would make it negative? Or he's allergic to something not tested? I told him to start tracking whether he feels worse after lawn mowing (even thought he grass test was negative) - but this is his summer job and it would be so horrible if he couldn't do it. He is so tired of feeling sick - he wants IVIG now because he's hoping it might make him just better. We are all approved on the IVIG but were planning to hold out until school ends in 3 weeks as long as we can keep him stable on the Biaxin for now. Do we need to really pursue this allergy angle before IVIG? Could it cause problems with IVIG if we don't? I'm afraid our immunologist is going to look at me like I'm crazy since he's already been tested!

Nancy: we had to go that route with our son 2 years ago and I completely understand the intense emotions that you are experiencing. I really felt traumatized for a long time, and I can only imagine how he felt. My thoughts are with you and your daughter.

I just want to say that I find all this talk about teens not responding to abx or IVIG very disconcerting. One of the things that made me give up my PANDAS pursuit during my son's 12 year old exacerbation was the "fact" that kids outgrow PANDAS at puberty and he had hit puberty. It wasn't until I read Saving Sammy, and saw his age at treatment, that I began pursuing it again. As you can see from this forum, there are plenty of teens who are still suffering. While I don't know the answer abx vs IVIG (we are still trying to sort that out ourselves), I do know there are teens who have responded to abx and/or steroids and have been helped tremendously. I know there are young kids who have not responded to IVIG. The problem is, I don't think its a "one size fits all" answer. I really think that, just like ssris work differently in each child, abx, steroids and IVIG work differently in each as well. I applaud Dr K for his realistic outcome that even IVIG will not get teens 100% recovery/remission. But I doubt most of us parents of teens who's kids have been sufferring for so many years, even remember or would know what 100% is anymore.

well I suppose the steroid did leave him open to the sinus infection. My dh developed a double ear infection and then my younger son caught a cold and then ds got hit - but he seems to be prone to sinus infections - seems a slightly deviated septum traps stuff in there. We are finally all set to do IVIG - orders have been written for 1.5 gm dose and we found an infusion center that will do it at cost (around $10,000) but are now in a holding pattern because he seems to be responding to the Biaxin again and we are wondering if we might be able to get somewhere stable again if he remains on this long term vs. on and off again. I supsect he has some type of chronic underlying infection(mycoplasma or something else) that is being helped by this drug but regrows/resurfaces after we take him off of it. He has made enough progress not to consider it a dire emergency, but honestly, I'm not sure what to do at this point. I'm not sure if withholding/waiting on IVIG is the absolute worst thing we could do, or if it's a ton of money and trauma to go through for only temporary benefit. our doc continues to emphasize IVIG is not a cure, but a way to get things cooled down (until the next trigger). We have a lead on a state service that may help pay for treatment and at this point are leaning towards waiting until school is out and to see if we can get this covered. For some reason, IVIG scares the crap out of me.

This, for me, is some of the hardest stuff. In 6th grade the school phobia surfaced. For him, he went blank during a test - his brain just wouldn't work. This scared him and he ended up having a panic attack. After this happened a few more times he became panicky that he would have a panic attack in school, and this led to separation anxiety. He could not stand the idea of having a panic attack in front of classmates and away from me with no one to help him. What we tried that didn't work: hospitalization, homebound services, gradual re-introduction to school (i.e. go 1 hour , then work up to 2 hours, then 3 etc.), lots of time in the counselors office, therapy. What did eventually work: an IEP reducing work and giving him daily one on one time with a case manager to manage academics, flooding technique with him signing a contract (i.e. go to school and can go to counselors office or time out room or call therapist but not home - has to wait out the anxiety until it calms and then go back to class) and daily prize box for attendance with large reward after completion of school (a tv for his room) That being said, 2 years later he still experiences periodic school refusal. Now it is based on being overwhelmed by the volume of work and fearing he may lose control at school. Once the volume of work is reduced and managable again for him, he seems ok. Again - the same theme that he won't be able to control his emotions at school (publicly mortifying for a junior high student) I have to say our school counselor has been amazing with him and usually is able to talk him through the worst and get him back on track. Do you have counselors/support services at your son's school?

His IGG levels are normal and he passed his serotypes for Prevnar. We did try the steroid burst twice. First time was not on purpose - he had poison ivy. The effect was an unusual calm while on it. Then we tried again 2 weeks ago after a peak (he's really either been in exacerbation since August or in and out since then - not really sure how to call it). This time his OCD symptoms slowly remitted over the 5 days and day 6 was wonderfully symptom free (except for the fact that his facial tic had decidedly increased with the burst) but day 7-16 were just so so but managable. Then the OCD and anxiety and mood swings started up again and 2 days later - boom - sick with sinus infection. Again - I think he is actually more hyper immune and that PANDAS symptoms start to activate with the exposure before the immune system kicks into gear and we "see" the sickness.

My son ALWAYS shows symptoms before the physical signs of illness show. It's how we know he's going to be sick. My theory is that the virus/bacteria is already there, already causing havoc, before the immune system kicks into high gear and the resulting physical symptoms show up.