tpotter

My son has the same thing. 6 EEG's all show abnormal brain activity (seizures), but I have been told, like you: "yes it is", "no it isn't." It was affecting our son's moods (abnormal brain waves were in the frontotemporal lobes.) We are treating it is epilepsy with Lamictal (lamotrogine) which helps tremendously (took him off for one eeg, and it was really obvious it had been working, so we put him back on.) It didn't completely do the trick, and neurologist added trileptal (oxcarbazepine.) Another doctor has suggested taking him off, but I have no desire to do so, because it definitely helps. It is possible these seizures/night terrors may be due to PANDAS, but I just can't take the chance anymore, and the meds he is taking are definitely helping. BTW, he has not had night terrors in years, but did have them as a young child (he's 14 now.) But, he does walk and talk in his sleep occasionally. Again, this was helped with the seizure meds.

Dr. K is now in network with BCBS, but we found out yesterday that, apparently this is a "medical rider" that requires different things for "out of the area" in network providers than for "local" in network providers. I don't understand in the least why it would be this way, and we certainly didn't know that when we originally paid 4 or 5 times more for this plan than the local plan! But, I'm hoping it comes through soon, and I did report it to the State Insurance Commission (I started that letter with "MY SON HAS POST-INFECTIOUS ENCEPHOLAPATHY AND INSURANCE IS REFUSING TO PAY!" I wanted to get their attention. The problem with using the immunodeficiency one is that these doctors that we are using are not immunologists.

What was the specific dx? The worst part of this is that we have been waiting a long time for tx of either kind...he was supposed to get PEX, but that got put on hold (even had the insurance approval!) Then we tried another dr., who said he'd consider PEX after he spoke with Dr. Swedo and another dr. He has yet to do it (1 1/2 months later.) I finally scheduled IVIG with Dr. K, as my "safety net", and now this! I did get insurance to write down for their "independent" reviewer to check Dr. Swedo at NIH (that always sounds good), as well as Dr. C, who has a grant from the NIH.

Thank you so much for everything you've done on this!

We were scheduled to go to Chicago today for IVIG with Dr. K. Insurance denied it, and I spent all day yesterday fighting it (I even sent a complaint straight to the insurance commission, and cried when talking with the insurance company. There's a few very questionable things about what they are doing (claiming that it's experimental, but he had IVIG last year with Dr. L, and it wasn't "experimental" then.) Today, a supervisor called me, and she was very nice. Said that they were going to send it to an "independent" reviewer who had nothing to do with BCBS, and s/he would look at the literature. I specifically told her that NIH recommends it, and to look at Dr. Swedo's work, as well as Dr. Cunningham's. It blows my mind that anything that causes inflammation in the brain, whether "post-infectious" as it was coded or just "encephalopathy NOS" would be considered "experimental". It also cost me 2 plane tickets (SW Air gave me credit, but we don't usually use SW.) It's also costing us a lot more time to get his treatment done, and we don't have anything else lined up...and can't until this is approved! AAARGH!

Your story sounds much like my now 17 yo. Your son has some sensory integrative issues (chewing on his shirt, hypersensitive to sound, etc.) Flapping his hands is frequently seen with Autism (but if he actually has autism, and I'm not a dr...I can't diagnose, because there are so many things that look like it), it sounds very mild, and the reality is that he is functioning at a very high level. A child with PANDAS/PITAND can have all the symptoms you are describing. My 17 yo was only diagnosed, because my 14 yo has classic symptoms, and I found Dr. K. who had written a paper describing adolescent/adult PANDAS (my 17 yo fit the description.) Dr. K. examined him, and determined that he did have it, plus, antibioitics worked like a charm (serious flare-up symptoms went away overnight with abx...3 separate times.) Then we had him tested with Dr. C, and it was positive (we just repeated it, because symptoms that look like Bipolar are present, and it was positive.) So, in answer to your question, yes it can be PANDAS/PITAND, but I would certainly see if you can find a really good Occupational Therapist who specializes in Sensory Integrative Disorder to evaluate him, and give him a "sensory diet" (sensory activities to help him at home). Even if you treat the PANDAS/PITAND, some of the sensory issues will not necessarily go away, and helping him function is important. But, I would also definitely see if it is PANDAS/PITAND, particularly if you are seeing flare-ups with illness.

Cyber Hug. You are a great mom!

Dr. L. has started a review of what appears to be working in her patients. I received a phone call from someone assisting her, asking what my children are currently taking, what treatments they have had (IVIG, PEX, steroids, abx, etc.), what results we had with each, etc. My understanding is that she is planning to present that at the OCD conference.

Fantastic. I would also contact Dr. Leckman at Yale, and Dr. K. Also, Dr. Swedo would be a good contact, as well. BTW, another response was that Dr. L. is a proponent of LD IVIG more often, but actually she does HD (we've had it from her.) She, though prefers PEX. Actually, Dr. J. prefers LD. This is really exciting. It's about time that something specific like this happens.

My son's problems have typically been worse in the a.m. or p.m. This helped the psychiatrist determine (prior to dx of PANDAS) that it probably was not bipolar (he gets mood changes), because it was time sensitive.

It only lets us submit for one child, and many of us have more than 1. Both my children presented differently (one was sudden onset, and the other wasn't...as far as we know.)

I would ask Dr. K. about this. In fact, I am going to be asking him exactly that next week when I bring my son there for IVIG. Interesting that you are bringing this up today, because we just went to our pediatrician, who we asked about putting my son on Nystatin for yeast (he's bloated, and also gets the non-specific stomach pain and nausea.) She called Dr. K, because she didn't feel comfortable making that decision herself, and he said NOT to put him on the Nystatin (keep taking the sacchromyces boulardi that he had said to take...but that we are no longer seeing evidence of working), and he would talk with us about it next week. I'll let you know what he says, but since you also have an upcoming appointment, I would suggest that you make a list of all the questions you want to ask him.

No we did not do the 30 day prednisone taper with her (but had done a shorter taper with Dr. K. prior to going to Dr. L.)

All I found were 25 mg and 50 mg tablets. Maybe I'll cut a 25 mg in 1/2 (which is more than you guys were taking, but I think a quarter will fall apart), and see what happens.

My son appears extremely bloated, and I'm taking him to the dr. tomorrow about it. I'm going to ask about giving him Nystantin, because I really think it may be yeast. He's taking sacchromycin like Dr. K. and several other doctors have said to do, but I don't think it is completely working.

OK. But, I think we should stop this line. I think we digressed a bit?

I think I'll try some DHEA. I think we have some left over in the cabinet. I rather like that last "side effect" you mentioned ! I'll start today.

Great idea.

Ask them if the "other" office is open. Then ask the answering service to put you through. I called this morning concerning my son's IVIG next week (about 10:30 their time), and had the answering service put me through to the other office (I never know which one is open.) I spoke with someone in the office. She did say that she would be in the "other" office this afternoon (about 1:00). Keep trying. BTW, did you get the angel food cake (GF) that I PM'd? Did you try it?

FANTASTIC! I am so excited.

THANK YOU everyone for all your amazing hard work! I'm so happy, I'm crying.

My son had a terrible reaction to the chicken pox vaccine. I stopped all vaccines, but if Dr. K. or Dr. L. tell me to get one (such as Tetanus if my child steps on a nail), then I'll certainly consider it. But, otherwise, Dr. K. said no vaccines, and I believe him. Here's another question to think about concerning vaccines. Is it possible that the children who become Autistic after they have the MMR vaccine at 18 months, really have PITANDS? That would certainly explain the question of why they were developing normally until that age, and then suddenly regressed. Just a thought. But, all that being said, I am not against vaccines as a whole. They serve a very important role, and I personally know of a measles outbreak this year among a large group of children who were not vaccinated. The problem is, that for children like ours at risk, it is a problem. And, of course, no one can read the future, and know which way to go!

That is so unlike Dr. K. But, he has been out of the country for the past week. I don't know if that had anything to do with it. Not unlike Dr. T., though. That's fantastic you found someone close to you.

My son's tics aren't continuous either...wax and wane they call it! Good idea to call Dr. K.