momaine

My 13yo dd with PANDAS never had a cavity until the year she was diagnosed with OCD. (hindsite it was PANDAS) That first year of PANDAS she had horrible decay that no amount of brushing, flossing, or mouthwash helped. Dentist was floored. Since starting antibiotics, she's had two cleanings that were cavity free (even though she brushes much less frequently and not very well, and rarely flosses now) This most recent visit she even had less placque than her sister. Her sister brushes twice per day, anally and always flosses and mouth washes. Never had a cavity. Dd with PANDAS can barely manage to brush once per day for most of the last 6 months.

Honestly, after the first two pokes, I'd have asked for someone more experienced. For anyone else reading this, make sure your child is well hydrated going into the procedure so their viens are easier to find. Angela

Why not call Dr. K or Dr. B and see who can get you in the soonest? (or one of the othe doctors willing to treat PANDAS) Angela

Dr. B told me the failed pneumococcal antibody panel indicated an immune deficiency. I believe he also said that antibiotics alone cannot fight strep in kids with immune deficiency. I googled C3d and found that it is elevated in Lupus and other autoimmune illnesses. All I remember hearing from Dr. B about it was the it indicates an autoimmune process going on and would help to get ivig covereage with our insurance company. My dd had low aso and antidnase titers but they have fallen further since beginning antibiotics. I don't really understand the correlation betwteen aso, antidnase, pneumococcal titers, and autoimmune illness. wish I could help more. Maybe someone else know. maybe no one really understand this yet??? Angela

In my dd's case, an immune deficiency to strep was at play and was likely the reason that antibiotics seemed to stop working. Antibiotics alone cannot irradicate a strep infection if your immune system can't help them. I think a lot of these kids have active infections that antibiotics alone can't wipe out because of immune deficiency. Have you done a pneumococcal antibody panel and checked C3d (circulating immune complexes)levels? If elevated it indicates an autoimmune process going on. Hope that helps some. angela

My dd was on steroids the month leading up to ivig which puts her in a pretty good place. We stopped steroids and one antibiotic, as well as advil when she had ivig. Considering that we stopped those 3 medications, I thought that it would be a lot worse. Pre-ivig, dd's worst symptoms were reassurance questions and other reassurance isses (needing me to look at her) Post ivig those things went away pretty quickly but her repeating issues that had not been as strong while on prednisone, worsened. Then they got a little better, then they really stalled out and then slowly began to get worse after 5 weeks. And now reassurance issues are creeping back in too, but nothing like they used to be. Now, I stress if she asks a handful of reassurance questions but they used to be all day long. She is also avoiding doing many things again which she does when the urge to reapeat is too strong. I'm looking forward to the next ivig in two weeks. the one othe thing that changed immediately post ivig is that her anger and frustration about the ocd issues lessened immediately. good luck! Angela

I don't have any advice to offer, but I do want to say I understand how you feel. I think we all sort of have post traumatic stress disorder....always waiting for the next bomb to drop. It's not a very fun way to live, for sure. I hope that some day this is all a distant memory. Angela

When my dd did prednisone tapers, when the prednisone stopped, the behaviors slowly crept back in. Sorry he is struggling. What are the doctor's plans after another taper? Does he have a long term plan? I begged for more prednisone while waiting for ivig because it really gave my dd back her life, for the most part. Angela

If I could offer you one piece of advice after going through ###### for over 3 years before finally getting a PANDAS diagnosis for my dd, it would be to take your son to one of the well known PANDAS doctors for a full work up. If he does have PANDAS, they will be able to confirm this and treat him CORRECTLY. Best of luck to you. Angela

Welcome to the forum. Your post made me cry. I understand what you are going through as my dd suffered greatly with PANDAS before finally being diagnosed more than 3 years after initial onset. What makes me saddest about your post though is that she had a diagnosis years ago and she is still struggling so badly without proper treament. Good luck with Dr. Latimer. I know many people on this forum use her and are satisfied with her protocol. Advil made a huge difference for my dd. Steroids helped even more. could you get a prescription for more antibiotics and/or steroids from your family doctor while you wait for your apt? Is it possible to find out which blood tests Dr. L would like you to have BEFORe you go to the apt. so you can get the ball rolling and be able to discuss the results with her while you are at the initial apt? Keep reading on this forum and find out all you can before your apt. Write down all your questions to you don't forget anything. Best of luck to you! Angela

How long has your child had pandas? I wish my dd had it back last fall when she was first diagnosed instead of suffering for 9 more months while we tried 3 antibiotics and steroids. Though my dd was diagnosed last fall, she has suffered with this for almost 4 years now so she's been a tough case.

Urinary frequency ended for my dd when she started antibiotics. Previous to that, she did get some control over it using ERP but I'm very sorry that I thought it was a compulsion when it was indeed a physical sensation.

antibiotics would help if he has a current infection. steroids help for a time, then stop helping. but things don't worsen beyond where they were, in my experience. It is safe to take antibiotics and steroids, yes. Personally, at ten weeks, if the antibiotics and steroids do not bring him around soon, I would consider it. Hope that helps. Sorry you are going through this. Angela

I want to second the suggestion to call Dr. Bouboulis in Ct. He will get to the bottom of this. It truly sounds like your son needs IVIG and Dr. B is now experienced with giving IVIG to kids with PANDAS. He knows all the safe guards and the nurse that does the proceedure is wonderful. I also want to relay our experience. Dd had allergies that I didn't know about. For her, the only symptoms she had were headaches that she complained about but that were not really excruciating. And in hind site she also had post nasal drip, which gave her stomach aches as well from the phlegm in her stomach. There was inflammation in her sinuses from the allergies that made it a nice place for strep to live in her sinuses. Dr. B thinks its very likely that the strep that caused PANDAS was from her sinuses. He put her on Singulair which has helped with the allergies (no more headaches) and he also had me give her Musinex to help dry up her sinuses and also he had her do a nasal rinse twice per day. It's like a Neti pot but she uses a squirt bottle. They are at the drug store. It has a saline solution in it and it rinses allergens out of the sinus cavity. The sinus rinse and singulair have kept her allergies at bay enough that she did not have an phlegm problems until recently when we started doing the rinse only every other day. (had gone to once per day and that was fine, but not every other day) So, I gave her Musinex and it helped again and her sinuses are clean. Dr. B checked the other day. She has had one ivig with Dr. B which helped her tremendously. I'm beginning to think she's starting to backslide a little and I'm thankful that we have another IVIG lined up in 2.5 weeks. I think she needs it. She has had this disorder for almost 4 years. We've known it was PANDAS since November and she'd done several antibiotics, steroids, and Advil for months before she finally had the first IVIG 5.5 weeks ago. Angela

Thanks! Am wondering today if she really is backsliding....its so hard to put it into perspective sometimes. Wish her friends weren't so busy these last few days. <sigh> Angela

Anyone considering homeschooling should check out their state laws and go on a local homeschooling forum to see how it actually plays out in real life. For instance, here in Maine, we must do testing or have a certified teacher do a portfolio review. The difference in assessors can make a huge difference in how one goes about home schooling. I have always homeschooled my children in a very relaxed child led manner and we found a teacher to do our portfolio reviews who agrees with my teaching style, so its not an issue to have a ton of paperwork. The law really just states that progress must be made each year. It doesn't say how you must go about teaching. Some online schools are very rigid and those programs may not work for kids who are dealing with PANDAS unless the teacher is very understanding. Angela

I assume you mean 2grams/kg rather than mg, right? (made that same mistake once myself) And what do you mean by every 30 days times 3? (3 days in a row?) Angela oops, you're right, I meant 2G/kg. We are giving it every 30 days (once a month) for 3 months. 2 treatments left. Sounds like an aggressive treatment that hopefully will help immensely. I do know that the reason that Dr's B and K don't do IVIG's at 30 day intervals is to give the immune system time to settle down in between. But I also know that various things have worked for various kids. Hopefully your regiment will be just right for your son. It's all an experiment of sorts, to some degree. Best of luck to you. Keep us posted. Angela

You were 40 minutes from my home. Glad you enjoyed your stay here in Maine. Sorry to hear about the allergies. If prednisone helps, you may find yourself wanting to hoard it. Getting some from both doctors might not be a bad idea. Angela

Doing a little happy dance for you! Glad you found this forum too. It has been my life line. Wish I could give everyone on it a giant hug! Angela

Yay! Keep us posted!

I assume you mean 2grams/kg rather than mg, right? (made that same mistake once myself) And what do you mean by every 30 days times 3? (3 days in a row?) Angela

Oh, and it's been 5 weeks since her first IVIG so they will be 8 weeks apart. The one thing that makes it difficult to know whether some of her issues are better or worse, is that she seems better with other people around even though internally she still struggles and we've had company almost constantly since her IVIG. Dd plans her life to stay as busy as possible because its so much easier for her. So, it's hard for me to tell, but the other day, the day of her apt. with Dr. B, Dd13 said that day was her BEST day so far. Today she is alone. (just our family home) She's struggling to walk without the repeating shuffling (and other repeating issues that make her avoid doing things....like reading or using a calculator)And she just asked me to LOOK at her, which was one of her worst symptoms before IVIG. Now her asking comes DAYS apart....she only asked once today, and that used to happen all day long. Sometimes she couldn't swallow her saliva without me looking to make sure she did it "normally." She would grunt to get me to look at her so she could swallow, because she couldn't talk with a mouth full of saliva. Sometimes I'd have to run from another room because it was too hard for her to get up and come to me. So all of the reassurance questions and needing me to look at her are pretty much 90+% gone. But her difficulty repeating things got worse after IVIG and then slowly improved....with some sawtoothed action...little worse, little better...hard to tell if she has stalled out or if the change is now so slow that I can't see it. But it is still a little worse than it was pre-ivig while on a long steroid taper. But at the same time, she is not getting Advil anymore, no more prednisone, and no more Augmentin. (still on Zith) Before IVIG, if we changed even one thing (advil, prednisone, or lower antibiotics) she would begin to fail immediately and HUGELY. Instead of shuffle walking, she'd get STUCK and not be able to move at all. She'd spend an hour trying to get into the house and through the door, all the while crying and raging against this aweful force that told her she didn't do it right and needed to do it again. It was horrible. She'd sit on the tar after awhile and cry and say she just couldn't do it. It would be ten o'clock at night and she wanted nothing more than to be safely in her bed but there she would sit on the tar, crying and angry and wanting to die. Sometimes I can put out of my head how horrible it was. But then the memories come flooding back when I type this out and I really realize just how hugely she has changed since the IVIG. Dr. B felt another one might help with the rest of the symptoms and I certianly agree that if we can make her even better, WHY THE ###### NOT? The poor kid has suffered long enough. We should have done it sooner, but God works in mysterious ways and if we had not ended up at Dr. B's we probably would not have found that she was immune deficient to strep and we likely would have had to remortgage the house to pay for IVIG. (as it is, we are already extremely broke from dealing with this disorder) So, our insurance will pay for the treatment and it helped her immensely. I'm hoping that another round will bring even more relief and permanant change. Angela

Not really back sliding but there is one groups of repeating symptoms that has been more stubborn than her other symptoms (which were actually worse). Dr. B thought that one more treatment would only benefit her more. Angela

What dose is she getting and is it with one of the doctors talked about on this site? My dd had IVIG 5 weeks ago and has improved tremendously. She had 1.5g/kg with Dr. B. They prepped her with benedryl, Motrin, and Prednisone. They also gave her IV fluids at the same time as the IVIG. It went perfectly. No probelms until a few days after the IVIG with slight headaches that Advil took care of. Dd's main symptoms had been (for almost 4 years) the asking of reassurance questions. That symptom just stopped sometime shortly after the IVIG. (every few days she may ask one or two questions now, before it was almost constant) She still has physical repeating symptoms and that shuffle walk (still a repeating issue really) similar to Sammy Maloney. We're hoping the next treatment will hasten the rest of her recovery. Other things that are better are general anxiety, irritability, separation anxiety, going through doorways, bedtimes. Angela

congrats! Here's to continued recovery!!!