wornoutmom

Our doc was going to order the Ingenex test for us, but after months of Biaxin, she said it would turn up negative no matter, since we are essentially treating any Lyme that might be there with the Biaxin as well. Dr T agreed that the Biaxin would interfere with the test results.

I SO get this. Its really heartbreaking for me to be around my son's peers sometimes and hear about all their accomplishments and see their normal social interaction with each other, while my son can barely get to school, can't read past the 5th grade level, is afraid to look others in the eye and feels like a freak. Its especially hard because every now and then we get a glimpse of who he "really" is and he's a great, sweet, funny kid behind this PANDAS mask. As painful as it is, I try to use this to motivated me to keep on fighting for him....

So glad to hear you had a good experience! Hope it's all uphill from here!!

So after 5 weeks are you still in the "worse" category? As in worse than before the IVIG? I know "something" is happening because his vocal tics, which had virtually disappeared on hte Biaxin, were out of control yesterday. He kept saying "why am I doing this? oops -sorry!" all day. Now the vocals are the least of my concerns, to be honest, but embarrassing and annoying for him. I keep wondering how many people really have that "moment" Dr K talks about where the OCD/tics are just suddenly gone one day, vs. a more gradual fading away?

you are an amazing mom!!!!!!!!!!! So happy to hear some good news.

You guys are just the best! Thanks so much for all your support and words of wisdom. I will definitely be re-reading this post over and over when my heart is heavy, and will be keeping my thoughts with those of you who are still struggling so far out from the IVIG, We have prednisone and risperdal at our disposal to use, I'm just hoping to not have to go that route. We are still on full strength Biaxin till the end of the summer (playing it "safe" per Dr T) so I would think we're covered in that area. Today we agreed to officially try to start the summer - which means no more sleeping the afternoon away on the couch and trying to stay active. It seemed to help. Then into the hot tub tonight for almost an hour - he is so much more relaxed. I think I'm going to have be a lot more proactive about structuring things for him for a while, but feeling a little less desperate than I was this morning. We'll see about tomorrow.....

Just thought I'd mention that all our auto-antibody results were in normal range, with a Cam score of 167. Dr Cunningham noted that they do not understand yet why the two tests do not always match. Has this happened to anyone else?

Couldn't sleep last night for all the guilt I am feeling. We are 10 days out and things seem to be getting worse by the day for ds. Yesterday we had rage and physical assault for the first time in 2 months. He spent most of the day being tortured by the thoughts in his brain and I think it finally just got to be too much for him. He is miserable and depressed again. He is begging me to do something to help him. He can't stand it and can't explain it and just stands there screaming "help!" over and over while I helplessly observe. It's not that we haven't been through this before, its just that this time I feel like I did this to him with the IVIG. If something positive happens a few weeks from now , we can look back and say it was worth it. But right now I'm in a dark place, feeling like, despite the best of intentions, I might have screwed everything up for him with no guarantees or hopes that things will get better. If your child is about to climb out of a deep well, do you throw him a rope watch him try to climb the rest of the way out knowing he might slip and fall back, or do you push him down to the bottom in hopes he might hit a springboard when he gets there and fly out of the well alltogether. I feel like I pushed him but he's not finding any springboard....

Jodie: Wow! Lots of similarities in our stories. Low ferritin was one of the first things we found in my son. Dr T is seeing a lot of this and has a post about it on his website. We continued the iron supps for 3months per our pediatrician, until he advised us to take him off of it. If I am getting this right, Dr T. postulated that low ferritin could contribute to inability to transport normal iron stores out of the brain, and that iron overload results in deposits/damage in the basil ganglia specifically. I was not aware of the increased risk for infection. We stopped the iron around the same time we started Biaxin for Myco P. and things started to improve - I'd say 75-80% Our son was also doing much much better but we decided to do IVIG as well to help prevent future relapse. We are 10 days out of IVIG, and he is not doing very well, I'm afraid. Just startled as to the similarities in our stories... -Rachel

We had a phone consult with the dr you are inquiring about back in October. It was very disappointing, as it appeared she did not read the vast amount of information I had compiled and emailed to her early. After an hour she decided my son did not appear to have PANDAS, as he did not currently have strep, and his tics began several years before his first confirmed strep throat culture and sudden onset. She did not pay attention to his "viral" pharyngitis (i.e. high fever, swollen glands and sore throat but negative rapid test - no culture done) that occurred a few months before the tics. Our psychiatrist who participated in the consult was a bit disappointed as well, as she questioned his diagnostic criteria (Swedo's) and did not hear us describing OCD (we were) but focused on the rages. She did know of the CamKinase test and did suggest this. She recommended getting off SSRIs and going on a mood stabilizer (read - bipolar), which we tried to no improvement. She did suggest 6-8 week antibiotic trial if the first did not work... So that is our experience. I think our son's case history is so long and complex, it made getting an accurate diagnosis very difficult (as yet another PANDAS expert suspected the exact same thing as the dr you are inquiring about). My sense is that if you are a newer onset with a clear cut strep history, you will be more successful with this Dr. If you have a longer history and more complexity, you may be helped further by those drs with more experience in that realm.

Marilina: I am a bit confused that your daughters IgG are positive for EBV but you say she is not positive for antibodies to EBV? I thought that the IgG is the test that shows the antibodies? I never thought about the steroids leaving the field free for EBV, but in thinking about it realize that ANY virus/bacteria dammpens the immune system and can leave the door open for the EBV to flare. Maybe this could explain my son's general chronic complaint of fatigue and malaise...Have you ever thought about flying to the US for IVIG? Did you ever talk with Dr T's colleague in Italy about PANDAS? Would your docs there be willing to consult with him or Dr T?\

Oh don't get me started on Aetna!!!!!!!!!!!!!![ quote name=norcalmom' date='Jun 19 2010, 07:29 PM' post='72200] Aetna (our provider) considers it experimental for pandas. Ironically, they have a page explaining what pandas is, and on that page they say that IVIG and plasmapherisis are used as treatment for some pandas cases. http://aetna-health.healthline.com/smartso...finition/za1192

Ellie: I have been in your shoes and think its ok to take a few days to grieve all this unfairness. We shouldn't have to fight for our children's health. In my mind, if a doctor prescribes, insurance should cover - period. Do they think a doctor is going to prescribe IVIG lightly???!! You will find the strength to rally again. Keep appealing. Check out the Coram centers to see if there is one near you. They sold us the drug at wholesale and only charged us only $180 for what turned out to be almost 14 hours of nursing care. And they let us use our credit card to pay. They do this out of compassion for self pay clients. Also, our ped has made an attempt to the insurance to cover the drug cost, rather than the IVIG infusion, which apparently is a whole other set of forms, so we'll see how that flies. Contact your HR dept. Ours offerred to get involved once the appeals have been exhausted.

thanks for posting. Your experience sounds so similar to ours - just a bit delayed in the time frame...Did they give your son any IV hydration? It's so hard to watch them suffer when they've already gone through so much. I do wonder if some of these side effects are realted to PANDAS specifically, the high dose specifically, or just IVIG in general?. We're on day 6 now since the first day of treatment. We're still seeing some headache (treating with Motrin) and lack of energy (napping daily for a few hours) but he also managed to mow the lawn, play with neighbor kids in the back yard, and do some laughing. On the down side, he says his brain is bothering him again frequently (for him that means swirling thoughts and anxiety/ a need to know what the schedule will be over and over and over again) and has had a few meltdowns, but nothing as bad as I expected yet. So you might be able to stop holding your breath? It did break my heart to hear him say "you said this was supposed to make it better, not worse!". I'll be interested to hear how you guys are progressing with this - I wish nothing but the best for you!

Interesting! This is the first time we have used Tylenol in YEARS, but for us only because I know it is hard on the liver and figured the ibuprofen has the anti-inflammatory effects and really works better. Yes, we are through the worst of it I think. We've seen some of the "turning back the pages" but nothing too severe yet - mostly he is just drained... My husband gave him a funny analogy yesterday. He said "Your brain is like a dirty toilet bowl. The Biaxin helped clean it out a bit the last few months, but the IVIG is like a super strength cleaner, and now the really hard to reach crud is breaking off in chunks while the cleaner works, so your having these "moments". Finally, an explanation my son related too!

So glad to hear she is finally sleeping! Hope you guys are catching up on some zzzs yourself!

I just wanted to say that I developed an allergic rash reaction to Biaxin after being on it 19 days. I thought it might be contact dermatitis, but it itched so I took a benadryl and it went away.. The next day it reappeared even worse about an hour after I took the next dose, this time with hives. Thank goodness it was my last dose. I was told the abx builds up in your system over time so you can definitely get an allergic reaction after being on it for a while, where there was none before. Have you tried giving Benadryl? If the rash fades after that, it seems it would be more indicative of an allergic reaction. If not, perhaps more indicative of a scarlet fever rash? Either way you should contact the doctor. There ARE other antibiotics that can work, so don't give up hope if you need to switch!!

Oh how I wish I'd asked this question more specifically before hand! Its hard to know how to use it best when I was the one asking the doc for it in the first place and he said - sounds reasonable - how many do you need and gives me 40 mg pills?The good news is the headache is down to a very dull roar and we've cut out the Tylenol and are just doing 600 mg of motrin every 6 hours until he tells me he's completely headache free. =

So glad to hear things are looking up!!!!!!!!!!!!!!!!

Melanie: We were actually alternating Tylenol and Motrin every 3 hours. We weren't really given instruction on how to use the steroid. I asked our docotor for it due the great folks on this forum posting about it, but didn't know to use it to prevent the headache - just though it was the "in case of emergency". Honestly he handled the infusion so well I never even thought about it, and then when I did give him the steroid, figuring that would nip it in the bud, he threw it up. Live and learn....sigh...I've been dosing the tylenol and advil now around the clock (I am so tired...) and the headache is pretty low level now unless he moves his head or changes position too quickly. Do you think its worth giving him the steroid for that level?? (I know from past experience those make him dizzy, so not sure if that's better or worse)

Well, we made it through the IVIG. The first day went great - a little grumpy, agitated after but no side effects. Gave him his last dose of ibuprofen at 11:30 and decided to let him sleep through the night. At 6:30 am he wakes me up to say his head is splitting in two. I give him Ibuprofen, make him drink a glass of gatorade and wait 45 minutes. No relief. So I give him prednisone. 15 minutes later he vomits. He rests for another 45 minutes and we have to leave to go to the infusion center. He vomits again in the car. We get there and they say there's no way their doing the second infusion with him like this. We call the doctor who says - oh yes, you have to do the 2nd infusion. We think maybe its dehydration so I call back the doc who orders IV saline and says to try and give him some Tylenol. I do. He throws it up 10 minutes later. They start the saline. We wait. He is miserable. After about an hour and a half he is able to drink so I give him more Ibuprofen. Then they take his temp and its 99 (he was running 97.5 yesterday) and his blood pressures up. Despite the Ibuprofen and the hydration his temp keeps rising up to 101.4. The nurse is saying no way is she going to do this infusion with a temp like that. Big thanks to Mary M who was at the IVIG center in Chicago with Dr K. and picked the brain of the nurses there about this and texted their response to me. These texts calms down our nurse who has never even heard of PANDAS before us and she gets gun ho to do everything she can if she has to stay all night. I also call our docs office again and tell them about the info from Dr K and his IVIG gang and they are grateful, saying they are just new at using this. I told them to make sure ALL future patients are given hydration orders with BOTH doses! (and I am kicking myself - because I knew better going into this).We give him Tylenol since the Ibuprofen has stayed down. An hour later the fever starts to drop, he eats and uses the bathroom for the first time since 6:30 (despite the bag of saline that has been dripping into his arm for the past 4 hours). We start the infusion at 2 pm and leave the center at 6 pm (9 hours later) with a saline drip bag still going for home. I had to call the nurse 3 times after I got home about it.. Have to remove the IV at 1 am myself which I am trying not to freak about. He freaked out and began sobbing at home asking me relentlessly about PANDAS and what this was all for (like we haven't gone over it 1000 times). I chalk it up to stress relief. He still has a searing headache but only when he changes positions. About 8 pm his leg starts uncontrollably twitching (like a shiver movement and a foot shake) To his credit he is fairly calm about it, and I finally went and felt his calph muscle which was seriously seized up. We put moist heat on his foot and this seemed to do the trick. Finally fell asleep at 11. Now I have to wake him soon to take out this IV and then every 3 hours for the pain meds. I am SO exhausted and so hoping tomorrow goes smooth as I can't imagine where I will get any more energy to deal with side effects from. I am praying all of this is worth it in the end....

I can't believe this day is really here, but I think I'm as ready as I can possibly be for this. I'm really really dreading any set backs (particularly the return of the rages) but I'm feeling hopeful for the future. Remind me of this please if 2 weeks from now I am ready to jump off a cliff because it has all come roaring back. I am grateful to be doing it locally and not have the added stress of travel. I am grateful that I have 3 doctors advocating this for my son (if only it would make a difference to the insurance company!). I am grateful that all the hours of research and fighting I had to do to get someone to listen to me has finally seemed to come to fruition. We seemed to have settled on the fact that the huge exacerbation this year was likely a MycoP infection that won't go away ( and is leaving him vulnerable to catching every little bug it seems). He's been on full strength Biaxin and 1 steroid burst since April and the once daily 2-3 hour exorcist attacks have gone (last one was April 24th - we're going on 7 weeks!) We're hopeful the IVIG will allow him to progress further and will marvel if we see the anxiety/OCD fade. We plan to keep him on the full strength Biaxin for the summer to be safe - they just don't really know the protocol for MycoP like they do with strep - and if all is well we will start to reduce it. Nothing, of course, ever goes according to plan, but it at least feels good to HAVE one. Most of all, I am grateful for all of you, for all the guidance, support and knowledge you have shared. We would have NEVER NEVER NEVER gotten this far with out it. Hope to pay it forward someday. Keep us in your thoughts the next few days!!!!!!!!!

Does anyone know WHY this turning back seems to occur? OBviuously it is not something most getting ivig for pid experience. So why in PANDAS? The high dose? Do we know how the ivig interacts with the brain that would cause this? Or do we just know it happens and its temporary?

Ds was positive for Mycoplasma IgG, not IgM like so many others. I believe Dr T said at one point that he was treating this as a chronic infection, given the neuropsych symptoms, until someone could convince him otherwise. We have been on and off Biaxin since mid March. In Jan/Feb my son was having destructive/psychotic, exorcist-like rages daily. Since starting the 2nd course of Biaxin the first of April, my son has has only one day of the exorcist. Even though we are going with IVIG next week, we have discussed and decided with Dr T to keep my son on the full strength Biaxin through the summer to try for the best possible outcome. I know how hard it is to get doctor's skepticism out of your head. I had 2 of the PANDAS "experts" tell me they didn't think my son had PANDAS. It would have been very easy to walk away. but for the support of the parents on this forum to keep going with my mommy gut. It's so easy to have moments of self-doubt, but I think you always have to go back to your gut. A lot of docs know what they learned in med school 20+ years ago and that's it. Our immunologist still thinks penicillin is the best and only needed med for strep because he studied this in undergrad... You found a doc you like and trust - take the leap of faith to let him guide you through this.