tpotter

Thanks. I will.

One of my kids had a reaction when the blood was taken out too quickly, but since it was being done by staff who were very experienced in this area (Georgetown), they took care of the problem instantly. The overall outcome, though was excellent. I would definitely do PEX again, followed by IVIG if it was an option. Right now, though it is not an option.

Thanks for the good luck wish. Also, yes, after H1N1, and after really any time my kids get sick, they do have an increase in PANDAS symptoms. That's why we're now doing IVIG.

Tell him my son said that he hopes he feels better soon.

I couldn't have said it any better than LLM and DCmom (and I know LLM, because our kids got PEX at the same time last year, and have PM'd with DCmom.) As they both said, PEX did work much faster. Actually, one of my kids got IVIG and then PEX 2 months later. The IVIG for him worked for about 1 month, and then we were back almost to square one. We had the option to go for PEX, and did, as well as doing it for my second son. Both my children have had PANDAS for a very long time, and both are older (14 and 17). The 14 year old's came on suddenly at 8 years old with a sinus infection, while the 17 year old we don't know when it started (he had strep constantly as a child...we only found out it was PANDAS, because my 14 year old was more "classic", and we saw a description of PANDAS in adolescents and adults written by Dr. K (we thought he had something else.) Although it came on suddenly, and we went from dr. to dr., we didn't get a diagnosis until the beginning of 2008 (4 years later), and the doctor treating him (Dr. T.) only did it sporadically. So, we are dealing with long term, older children, and this may be different than others. Truth is, nobody knows for sure, which works better. Now, back to the beginning. My 14 year old had IVIG. Said it was horrible (headache, felt awful,) and honestly, it didn't help him as fast or as completely at that time as the PEX. But, like LLM's son, he did have the "canary" effect after the PEX, and everytime he catches something, he gets increased symptoms. He can't go on this way, and although I would much prefer doing another round of PEX (to clean out the toxins quickly) and then IVIG (to help his body fight everything off) on him, it's not an option at this point, because the one PANDAS expert doing it isn't available, and it is not available to all children at this point. He was begging me not to have IVIG again, unless it was necessary, but he understands it has now become necessary. That being said, his symptoms are only about 80% as bad as they were prior to IVIG last year, and about 50% as before the PEX. But, I want him to be 90% - 100%, and I have to at least try. My 17 year old has only had PEX. The year before his PEX treatment, he missed 32 days of school due to illness. I didn't know he had OCD and Anxiety until that year, and now I can look back, and say that: "yes, he had it, but it was nowhere near as bad." Rages came out of nowhere, and trust me, they were so bad, the rest of the family had to go to a hotel for the night, and leave him at home to cool down. We had his psychiatrist even call him. He had more episodes, and couldn't continue this way. PEX was an option, and we jumped at it (insurance even paid!) Everything got better almost instantly, except the OCD, which didn't go away at all for him. He got H1N1 in October, and was out of school for 1 week, but only ended up missing about 13 or 14 days of school total last year (vs. 32 the year before.) I am hoping that the IVIG will help him where PEX didn't. We would have done IVIG on him last year after the PEX, but insurance didn't approve it, and I didn't know to fight it (plus I was just wiped out, because we had serious school issues, as well to fight.) Again, I was all prepared to get him PEX and then IVIG this year again, but it is now now not an option, and we have to do something. I had his blood retested months ago with Dr. C, because of his age, symptoms (could have been something else), and how long he has had it. His CamK is up where it was before, but Dopamine 2 is somewhat down (still elevated), and all other levels are down to normal. Tells me that the PEX definitely helped. Because of his age, I want to throw everything at him, because I don't want him to have this his whole life if I can do anything about it. Both my boys are on Augmentin XR 1000 mg twice daily, and Dr. L. says they will probably be on it until at least early adulthood. I accept that (she is treating as aggressively as RF, and that's fine with me.) BTW, when my 17 year old started on abx last year thanks to Dr. K, who we saw just before we saw Dr. L, who is much closer to us), his symptoms (which were horrendous, but I can't post them publicly) went away overnight (happened 3 separate times.) Even he said it was a miracle. So, that's the deal. I don't know the answer to getting other docs to use PEX. I thought I had found one here, and he said he would talk with Dr. Swedo to see what she thought about PEX, but as far as I know it hasn't happened, and I can't wait any longer. Maybe he'll come through in the end. I'll keep you all posted if it happens. But, for now, we are getting the IVIG from Dr. K. Hopefully it will help my 17 year old get rid of the OCD, and my 14 year old improve him immune system so he's not always getting sick, and then having PANDAS symptoms again. I'll keep you all informed.

Thanks for your insight. Trudy

Do you think Augmentin XR might help? I know you said Augmentin didn't work, but we also found little help with regular Augmentin, but the XR seems to work better in my kids.

So, I'm trying to make sense of what you wrote. Are you giving 1000 mg of NAC daily to your son? If so, are you finding that it is helping?

Both my sons are getting ready to have IVIG with Dr. K. One is scheduled at the beginning of July, and the other will not have it until the beginning of August, hopefully, because he has a summer program at one of the universities that he doesn't want to miss. But, we have a family vacation scheduled at the end of August (the last week of summer break,) and I really don't want to cancel it. My younger son had IVIG last year with Dr. L, and he was "good to go" within a week. But, I keep reading everyone's posts that allude to the fact that they have problems for weeks/months afterwards. My older son will be getting the IVIG approximately 2 weeks before the trip, if all goes well. What do you all think? Do you think this will be a good idea? I don't want to wait until school starts, because he will be a HS senior, taking a bunch of honors, AP, and even 1 college course, and he can't miss school. What would you all do? Thanks.

If IowaDawn doesn't have the answer for you, try writing a letter to your State Insurance Commission. When insurance companies get letters from them (even though the commission says that you have to appeal it, again), the insurance company usually caves (they don't feel like messing with the insurance commission (I've done it twice for other things, and it worked like a charm.) It might be worth a try. I so feel your heartache. My boys are older, too (14 and 17), and we, too have been on this path a very long time, and only recently found out what was wrong. I will keep you in my prayers that you find a quick way out of this mire. These children deserve so much more, and it's just not fair that we have to fight so hard. Hopefully, we can find faith in the fact that we are paving the way for future parents of these kids, and in another 5 - 10 years, PANDAS will be treated quickly, easily, and by many, many doctors with no fight from insurance! That's what I keep telling myself as I fight to get tx for my children.

Since your pediatrician is supportive, do you think he would follow the directions of Dr. K.? If so, Dr. K. does phone consults. He won't prescribe unless he has actually seen your child, but he will tell your ped. what to do. The other option (and many of us have done it,) is to hop on a plane and go see him, or Dr. B. I would recommend Dr. L, but if you have been following the posts, she is out until August. You definitely won't go wrong with Dr. K., and from what I have read and heard from others, apparently Dr. B., too (I haven't personally met him or spoken with him.) Dr. T. does not treat with more than abx, and a lot of people (including myself) have found that he does not return phone calls. Maybe you can start with a phone consult with Dr. K, and then decide from there. Good luck. I'm so glad for you that your pediatrician caught it early, and is so supportive. Dr. K. is a pediatrician, by the way, and maybe your pediatrician would be willing to learn a lot from Dr. K., and start treating more kids out that way like Dr. K. did. Just a thought.

We went IVIG. It didn't work as well for the son who had it, so we went with PEX. It was a huge difference...worked so quickly for him. We should have followed up with IVIG, but insurance initially refused it, and we didn't fight (we would now.) We were going to do PEX again (through Dr. L....as far as I know she's the only one doing it), but things fell apart at the last minute (nothing to do with him...just affected him.) We are finally getting IVIG for our kids, because PEX is not available at this time. Personally, we found PEX better...worked much quicker and more complete, and honestly it scares me less, because there are no human blood products (they use a "plasma" created in the lab.) But, I do believe it needs to be followed up by IVIG. Just my opinion. But, it's kind of a moot point, unless you have found someone to do the PEX.

You make complete sense, because we are in the same boat. My 17 yo has Asperger's and PANDAS. Yes, the PANDAS symptoms cause some of the Autistic-like symptoms, and he is certainly being treated for it. But, he still has communication, sensory and social skills problems, which are Autistic symptoms. My 14 year old is like your 5 year old. Get the PANDAS under control, and he is neurotypical. That being said, because he has had it so long, he now needs help dealing with behavior problems that are now habit. But, back to the original question. Get the testing done with Dr. C. to see if your child does have PANDAS, and contact one of the PANDAS doctors on the list. Because treating the PANDAS is very important.

Also, read the terms of your insurance. They are supposed to cover encephalitis, and if the doctor writes a good letter it should go through (Dr. K. is experienced with that, too.) If they still deny you, call them immediately, quote the terms, and be prepared to keep calling back (the more you bug them, the more they want to get rid of you.) Another thing I have done (twice), is I call the State Insurance Commission. They usually tell me I have to respond to the insurance company (they quote the rules I already know,) but then they also call the insurance company. Trust me, insurance companies don't like to get called by the State Insurance Commission. Both times, I got a call back immediately, and told what I was trying to get approved was approved! That all being said, I am going to be in the same boat on Monday when I get the codes from Diane at Dr. K.'s office (one of my kids is scheduled for the beginning of July!) BTW: The Surgical Center at Dr. K's takes BCBS, and I was told that Dr. K. does, too! That does help (in-network is always easier to get approved.) Let me know how it goes.

In another post of yours, you asked what else you can do. I would definitely go see Dr. K. or Dr. B. or one of the other docs on the list (Dr. L. will be out until August, but they are starting to make appointments, and she can do PEX in some cases, as well as IVIG.) The other docs do IVIG. Dr. T. only diagnoses and treats with abx. Personally, with ASO and AntiDnaseB levels that high, I would go the next route (PEX and/or IVIG.) It has made a world of difference for so many of our kids, including my own. Psych meds just don't tend to work well, if at all, on these kids (didn't work for Sammy, either.)

That makes sense. My son has the same rash on his shoulders, upper back and upper arms. I'd never seen it before. It's kind of strange that all our children are getting it kind of at the same time? It's going away now.

Also, since you now know this is possible, always make sure they take his blood lying down, and he stays that way for a few minutes afterwards. They need to keep an eye on him to. Both my boys used to almost pass out afterwards. That's what they told us to do for them.

Oh, also, check out the website: www.pandasnetwork.org It was created by another parent, and has a ton of information, including research. It also has a small table that shows quite a number of our families with autoimmune disorders.

1) PANDAS can present with hallucinations (my son had them). 2) I treat children with Autism and Sensory Integration Disorder, and I can tell you I work with quite a few now (and some in the past who I called after finding out about my own children's diagnoses), who I suspect might have PANDAS, but it is certainly worth checking. Many Autism experts are starting to believe that there is inflammation in the brain, and that is certainly what PANDAS is about! Just like not all children with Tourettes or OCD have PANDAS, neither do all children with Autism, but that being said, I do believe that some do have PANDAS. 3) Dr. Cunningham's contact information is: Madeleine W. Cunningham, Ph.D. George Lynn Cross Research Professor Microbiology and Immunology Director, NIAID-supported Immunology Training Program University of Oklahoma Health Sciences Center Biomedical Sciences Center, BRC 217 975 NE 10th Street Oklahoma City, OK 73104 Tel 405-271-3128 Fax 405-271-2217 email: madeleine-cunningham@ouhsc.edu You can email her this evening, and be prepared to write up a history of your child's symptoms, onset, etc., since this is a study She usually emails back the same night (around 3 or 4 am!!!) She is an absolute doll, and wants nothing more than to help our children to stop suffering. Oh, and BTW, please make sure you vote for PANDAS research on Pepsi Refresh grant (we are trying to get a $50K grant for her research.) The information is on this forum, as to how to vote for it. Get all your friends and family to vote, too. I am so sorry you had to join our forum, but I am also very glad you found us. We all understand everything you are going through!

I know you said you are going to set up an appointment with Dr. Latimer. She is a wonderful doctor...very caring, and very, very knowledgeable. I don't know if you are aware, but she is out for awhile, due to a family tragedy. But, I was told by her office manager today that she is planning to be back the beginning of August. So, if you can wait that long, I would call her office immediately to get an appointment. Alternatively, you might want to consider Dr. K (in Chicago) or Dr. B. (in CT). Any way you go, I would definitely recommend that you contact Dr. Cunningham in OKC, and get her test kit. It is $400, but given as a donation to the OU Foundation, so it is tax deductible. Personally, I have 2 children who are diagnosed with PANDAS...1 has classic symptoms that still took 4 years to diagnose, and another 1 1/2 to get the first treatment. The other is diagnosed with Asperger's, but I now wonder how much of his symptoms could have been controlled if we had known about PANDAS. He presents very differently than my other son, but because of Dr. K, he is now diagnosed with PANDAS, and the greatest thing has been that he responded, literally OVERNIGHT to antibiotics. Dr. K. diagnosed the first time, but Dr. L. did do the treatments, as we are also much closer to her. I have been very happy that I have been to both (as have other parents), because we have needed to use one or the other at various times. Here's the clincher...if it wasn't for Dr. Cunningham's test, we would not know for sure that our older son (with the Asperger's) actually definitely had PANDAS, and trust me...his symptoms got really, really bad, until he was treated with PEX (he still needs another round of PEX or IVIG.) We repeated Dr. C's test, because the symptoms were coming back, and they looked like Bipolar. I can't recommend her test enough, because it can really help you to make a clear decision in your own mind if it is PANDAS, particularly in cases where it isn't clear. Finally, if you go to Dr. Latimer, she will probably want to see the test results (she puts a tremendous amount of faith in Dr. C's work), and it also doesn't hurt to have the test results for Dr. L, Dr. B, or anyone else you choose to use for that matter.

YAY!

Absolutely. In some ways it's good, but in others....well, you understand. One of my kids would wait until he got home, and then start stabbing knives into a door from all the stress he'd held together in school!

Don't worry about knowing what to ask Dr. B. We haven't been to him, but based on all the forum information about him, I suspect he's like the other PANDAS doctors. He knows what to ask you. Personally, I would not give him the psych meds, yet...wait until after you see dr. B. (maybe ask him that one.) Also, if you haven't done it yet, check out the website: www.pandasnetwork.org I'm really glad you caught it so early. Good luck.

Dr. K. is absolutely wonderful, and the fact that you can drive back and forth is even better. I wonder if you can send away for Dr. Cunningham's test kit, also? Seems like you could have that information before you go to the doc.

OMG...Did I write this one (just insert: " doctor who doesn't treat patients, and who didn't read any of the material I sent her" for "teacher", and "single" for "married", and I swear I must have written your letter in my sleep! Just venting, too. (BTW...I refused to go to a family get together in December for the same reason, but went to one this weekend. She actually tried to give me a hug...I turned around and walked away!)