T_Anna

Art imitates life. Last night I turned on Nick at Nite and caught a scene from a 1989 Golden Girls episode about CFS "Sick and Tired". It really struck a cord that these types of diseases have not made a lot of advancements in 24 years : ( I almost cried when one doctor tries to blame her symptoms in being divorced and another on getting old. And then Dorothy uses Lyme as an example on newly discovered diseases. On YouTube: http://youtu.be/us8iGG2biDw T.Anna - I guess we are all channeling our inner Ma (Mrs.Petrillo) DS15

Interesting, but I don't think DS ever had RLS. We have many other things: Mainly severe OCD, some choreoform movements, finger tic, restrictive eating, BM issues, separation anxiety, and yeast issues. Sorry if I was unclear. T.Anna

"I also wonder if an ambulance would be more traumatic than a car ride. How about getting a d d player or letting him play a computer in the car or some other enticement?" Thanks. We'll have to take the insurance/bill risk since we have to be in the ER on Tuesday. He is generally OK once he gets on shoes (DH's crocs) and sets his mind that he is going. Last Wednesday, when we took him to the appointment, he asked why we didn't just try taking him while asleep. DH explained that he was afraid he'd wake up and be violent. Someone here suggested getting a wheelchair and that might be a good idea (he doesn't have to push himself too hard). There is something convenient about not having to be active in the decision (lie down and close your eyes). But we live in a NYC building and if you walk you can leave discreetly by the delivery door and stairs, the ambulance will need to use the lobby, doorman and front doors, which I think DS wants to avoid. I am sending his siblings to grandparents tomorrow night, so DS will get a hint that something is happening and we can maybe "discuss" it. The private ambulance said that there is no cancellation fee, so that's good. T.Anna DS15

My last comment on our visit with Dr.N...I hope ; ) Yes, DS's attire reflects his severe OCD. Unfortunately, we are beyond CBT at this point. I don't feel the comments about "dressing your child" are harsh, just misinformed. I just read Howard Hughes: The Untold Story by Peter Harry Brown and DS is in "good" company. This thread and hurt feelings will also pass. Let's remember that there are already thousands of people who judge our disease/disorder and tell us it doesn't exist, let's not act like them. S&S, thanks, yes it is really, really hard. T.Anna - turning the other cheek and moving on in positive directions.

Some have found success with L-Lysine too. And yes, being aware early should definitely help in treating your child. T.Anna

We have dealt with viruses and the numbers improved, but DS is still very stuck. I am so glad to hear about your improvements! Hope you are getting rest too. T.Anna

DS tested negative for Lyme with the CDC. T.Anna

That is horrible. I'm glad you found an experienced attorney. I have the chance to influence the companies insurance provider starting in October. Anyone OK with their insurance?

LaurenK, I am really very sorry that my post upset you. Your experience was one of the motivating factors behind my pursuing an appointment with Dr. N. I was impressed and inspired that he healed you and Melanie's son (as well as Susannah Cahalan) and I was hoping he would do the same for my son. Unfortunately, my experience was quite different on many levels (for whatever reasons). In my view, this forum is about sharing information and supporting each other, as we try to heal our children (and sometimes ourselves). Sadly, there are enough people out there ready to tell us we are being misdiagnosed or have a simple psychiatric illnesses. Lets continue to hold ourselves to a higher standard and be as supportive as possible. Dr. Hollander remains part of our "team", more apologies if my posts were unclear. T.Anna DS15

LaurenK, DS's results were very high CamKinaseII (210) all other neuronal were in high average ranges, but because of the CamKinaseII he was deemed "PANDAS highly likely". Tpotter, I found a local pediatric neurologist who practices holistic medecine. I just need to get DS a bit more functional before I can start with her.

NorcalMom, when Dr.S called and I told her about the appointment she also said CamKinaseII isn't a random marker. MomWithOCDSon, Your explanation makes a lot of sense. Dr.N went off about our "abuse" if Advil for almost half the appointment (5 minutes). It almost seemed that he was addressing "PANDAS patients and their Advil!" Philamom, you're right that I should write a letter, maybe if I find myself angry with extra time (wish I'd taken their names). Pr40, Great way of looking at it, yes, why is depression a more appropriate dx? LaurenK, I'm glad he is treating you well. I don't agree with his observation, because they were a mishmash. One minute he's telling me to switch from Azithromycin to Minocycline because it helps with inflammation and the next he tells us there is no inflammation. T.Anna Ds15

Thanks MicheleW and Ifran.

Powpow, good question. What would make him think it was autoimmune? I don't know. Maybe if my son had more neurological issues?! He was relatively coordinated, and spoke well and not catatonic...not sure. Yes, the nurse who weighed DS was standing by the checkout and pointing at my sons socks with another nurse. She knew I caught her, thankfully DS and DH didn't notice. Bothered me since it's a neurological/epilepsy office, it's not a bank or advertising firm where people look clean and "normal". Good news: when we got home Dr.S called that maybe she found a way around the red tape and if it works can admit DS on Tuesday for PEX. Just praying our psych plays nicely with hospital in house psych. It's so up and down...exhausting. Now my other two kids came down with Strep too!!! Good thing I had the extra Greenstone z-packs (that Schulman didn't like). When I got the appointment I was elated, because everyone was talking about him and I read Brain on Fire and was impressed. But Dr.T had warned me that everyone he sent there was referred to psych. Waste of $600 and a lot if anxiety for poor DS (who once again hates only me). T.Anna Ds15

So we went to another appointment. This time at NYU with Dr N. Very disappointed, basically believes DS is suffering from extreme depression and not PANDAS at all. His argument was that all these months of abx and the two HD IVIGs haven't helped and his titters and Cunnigham panel are not definitive. "You can take anyone off the street and they can have high titers or high Cam Kinase II." He didn't explain why someone who is only depressed has tics and choreoform movements, but seemed to think those can also "happen" randomly. He ran some blood work, wants us to run a MRI and other brain scans, but he hardly spoke to DS (who was talkative with the pediatric practitioner). Asked him two questions "you're very sad, right?" "you dont have many friends. how many friends do you have?" He recommended we get a good psych on board and then they'll sort it all out a treatment plan. But that immune modulation alone won't help. He suggested minocycline, but when I asked about a script the assistant said they'd wait for the MRI etc to come back (not even scheduled yet). He went on and on about how bad Advil was for DS (400 mg a day) and that it will wreck his body and skin. When DH said it helps with rages and inflammation, he responded there is no inflammation. "I wrote the papers on inflammation and am triple board certified." Thin slice test? I caught two nurses (one who gave DS weight/height/blood test) call another nurse over in the hallway to point at DS's socks (quite a sight I agree, but heartless). I took the assistant aside and told her what happened and got an empty apology. Poor DS. It took do much for him to leave the house and for what??? Now I have a doctor who wants to treat and is having trouble with hospital red tape and a doctor who told me and DH twice that he is triple board certified and wrote ALL the papers in immune related disorders. I know he has helped some, but his attitude was one we've seen from many non-PANDAS believers. Maybe DS didn't present as a child who is so sick (didn't tic the whole time). Crying in the car!! T.Anna DS15

It is now almost a week since I added the Diflucan back and things are much improved. The ticcing is less often, and he is in a much better mood. Thanks everyone. T.Anna

Update. DS asked to talk to in-laws when DH was on the phone with them last night. He said he wanted to apologize for Sunday. DH and I were in shock. No one made him feel bad at all, it was all his idea. Maybe sign of something??? It would be nice as we have an appointment tomorrow and really dread going out again. Thanks everyone. T.Anna

It needs to be an attending at that hospital (Maimonidies, Brooklyn, NY).... : ( No, we have not seen Dr.L in MD. Thanks, T.Anna

We are waiting to start PEX and I'm getting worried. The hemotologist wants a neurologist to sign off on procedure and cannot find one that believes in PANDAS. This is so frustrating. It's a smaller hospital and I guess they have had issues with insurance not wanting to cover procedures before...but all this waiting is unbearable. He is in a such a bad place and it has been going on for so long. I was really hopeful we were on our way to something better. T.Anna

Thanks Mary. It seems that DS had suggested to DH that he take his siblings to see the grandparents. DH agreed and I will have a couple of quiet hours here with DS sleeping and the other two and DH at grandparents!! Was really surprised at how well DH handled it all. T.Anna

We are still waiting to get the go ahead to do PEX. In the meantime we called a local private ambulance to see if we can use them in case DS refuses to get in the car. Has anyone ever used one of these services? We would be going to the ER, but it is too far to call 911 or a volunteer ambulance. The company said we could submit the claim to insurance, but curious if anyone hashad any success with that. I'm not so worried once we are actually in the hospital. We think DS's issue is more about leaving his comfort zone then accommodating treatment. He is usually great with IVs and Blood draws etc (even when they cannot find veins, etc). T.Anna DS15

Ds15, seems to be back a bit better. Since adding the Diflucan back there is less ticcing and especially less choreoform movements. He ate three meals yesterday and the day before and was generally in a good mood all day. DS is homebound, and asks his maternal grandparents to come over EVERY day. Last night DH mentioned that the other grandparents were planning a visit and DS started crying. He has had issues with them since all this started, but this was the most unhappy we had seen him all week. He asked to be left alone today. A while ago he stopped taking their calls (hates talking on the phone, especially since it's difficult). Has anyone else gone through this? I think it's that he feels too much pressure to be "normal" around them. In truth they have never understood many of his issues even before PANDAS took over. DH was hurt, but not surprised. I think he is more stressed by what to say to his folks. T.Anna Ds15

I agree that OCD really plays on 100% of all his responses : ( T.Anna

Trying to PM Melanie.

But it wouldn't go through. T.Anna

Thanks Dedee. I think that I will use your phrases. He definitely wants to get better and is pretty patient with blood tests, IVs etc, but I think it's the fear of leaving his comfort zone that really throws him. The last doctor's appointment we "sprung" on him that morning (appointment was at noon). With a week long hospitalization, he prob should have a little heads up/advance warning!?? Is there a downside to that? Thanks again, T.Anna