T_Anna

Someone told me that sometimes there are bad rebounds with the high dose steroids...anyone hear this? T.Anna DS15

My boys are huge fans of the Big Bang Theory and Friends. I often wonder how DS sees Sheldon and Monica (both main characters with overwhelming OCD). We often diffuse these all or nothing rules with humor and maybe even innuendo. T. Anna - also an anti-mom

Yes, but it was so long ago that I don't really remember specifics-i'll have to look at my notes. I only remember that we were enthused enough with the burst to go ahead with the taper. We stopped the taper with a week left as he was complaining a ton that his stomach was burning. T.Anna

I have spoken with Dr. Storch a few times. He really stressed that DS needs to be at a more receptive/functional point to yield any results from ERP. I tend to agree that DS probably wont believe he can get over this until he feels a little better. He was great with CBT before we realized that we were beginning to sink into an exacerbation (or what that even meant). Did your daughters do any IVIGs? Thanks, T.Anna

Dr. T said that would probably be the easiest/fastest thing we can try. Do you think it would help "unstick" DS? How did you get to the IV Steroids? I saw that Susannah Cahalan in Brain on Fire was also treated with a lot of IV steroids. T. Anna

Spoke to Dr.T this morning regarding the results. He said that it showed that there was activation due to antibodies, but not against those neurons. He wants to run another neuron panel that will include other possibilities. In addition, it looks like DS is hypoglycemic and may have trouble with his Thyroid levels, THS levels dropping. He wants to check all those out this week in addition to running genetic tetsing. He mentioned that there is someone running some trials of immune suppresant IVs atthe MayoClinic. In the meantime, I'm trying to get an appointment with Dr. Susan Schulman who I've heard good things about and can run PEX. On July 3rd we have an appointment with Dr.Najjar at NYU, but I just heard that his assistant tends to recommend psych treatments and that we need to insist to see Dr.Najjar in person. So tired of all this running. DS was a complete jerk this morning, wouldn't take meds, said he wouldn't eat and then changed 20 minutes later. He must have gotten a text from his buddy that he was coming to visit...now he's nice again, took his pills, eating cookies and playing video games with his brother and the friend. T.,Anna DS15

Oxford (United Healthcare) will not pay for Quest labs. Result of a contested lawsuit years ago.

LabCorp.

Anyone have any experience with IV steroids? T.Anna DS15

DS has severe OCD. He has some tics, mostly with his fingers. He used to have body movements, but I haven't seen those lately. Prior to this exacerbation his issues were showers, praying for hours, hoarding, etc. Now it's mostly avoidance. We did two IViGs. In February 2013 and March 2013, but they weren't enough of a reset at the time. T.Anna DS15

One of the success stories recounts issues with Tindemax. Second to last, I believe, from Laure. T.anna

Just received our report: D1 D2 Lysoganglioside Tubulin CaM KinaseII DS's results 1000 4000 80 500 209 Normal range 2000-8000 2000-8000 80-220 250-1000 53-113 Because of the elevated CamKinaseII DS is PANS/PANDAS Highly Likely Any thoughts what this means? Talking to the doctor early tomorrow morning. T.Anna DS15

He did a steroid burst and then a taper. He did well with the burst, so after a few weeks we decided to try the taper. It worked well, but we stopped half way as he wasn't able to tolerate the stomach burning. Just got Cunnigham results, will post soon. T.Anna

No changes. We added Biaxin a few weeks ago and we were tapering off the Luvox for the last few weeks. He took his last 25mg Luvox Saturday night. We did IVIGs February 15 and March 15, with little relief. He is still stuck in severe OCD, but I'm excited there was a change. His mood has been better lately overall, less frustration. Today we get our Cunnigham panel results back. T.Anna DS15

Not sure what this means, if anything. DS fell asleep last night at 6pm and woke up at 4am. He has had problems falling asleep since this all started in January. Friday and Saturday he fell asleep in the evening, but for only 30 minutes or so which was already remarkable. No other changes though, still has a hard time going to the bathroom. Hasn't changed clothing, showered (besides a sink type), left the house, etc. Thoughts?? T.Anna DS15

Thanks everyone!! These are such inspiring stories. I take comfort in that many different ways these kids are getting better. Please keep sharing. T.Anna DS15

That's great news! T.Anna

We are doing much better without the Luvox, but 25mg is very low. DS's pupils became more dilated when he became reinfected in December/January, the dilation went away after the 1st IVIG. T.Anna DS 15

DS has been on Valtrex. He actually had Coxsackie and chicken pox when he was 1 years old ( at the same time). I had shingles at the time. T.Anna Ds15

This is more about frustration than advice. I have learned that there are probably another 6-7 cases of pPANDAS at my kids school. But it's always a secret. One kid is in my daughter's fourth grade class and has blinking tics but no OCD. The mother knew of my situation and approached me. They had had successes with abx, the last episode abx didn't work. They had a T&A in January and tics improved slightly and now they are relying only in therapy and possibly tic meds.I told the mother it may be a co-infection like MycoP, she said that her son has had MycoP numerous times, but doesn't want to put him through another blood test. There is another child with a similar story too, but that mom doesn't know that I know and according to a mutual friend isn't interested in research/help. I guess I find this frustrating because I wish someone had pushed me to check in DS earlier. The nature of mental illness and the secrets families prefer to keep, just means that it will take that much longer for this to be recognized and covered by insurance. In the meantime these kids will suffer and possible get numerous execerbations : ( T.Anna

This is more about frustration than advice. I have learned that there are probably another 6-7 cases of pPANDAS at my kids school. But it's always a secret. One kid is in my daughter's fourth grade class and has blinking tics but no OCD. The mother knew of my situation and approached me. They had had successes with abx, the last episode abx didn't work. They had a T&A in January and tics improved slightly and now they are relying only in therapy and possibly tic meds.I told the mother it may be a co-infection like MycoP, she said that her son has had MycoP numerous times, but doesn't want to put him through another blood test. There is another child with a similar story too, but that mom doesn't know that I know and according to a mutual friend isn't interested in research/help. I guess I find this frustrating because I wish someone had pushed me to check in DS earlier. The nature of mental illness and the secrets families prefer to keep, just means that it will take that much longer for this to be recognized and covered by insurance. In the meantime these kids will suffer and possible get numerous execrations : ( T.Anna

Our IVIG never really showed great improvement. There were minor improvements though. Less rages, eyes no longer dilated, reduced OCD. But I do believe that there is something else going on and that we had treated his infections long enough/aggressive enough to allow the IVIG to work. Many people on the forum stressed that getting those infections down was important, but we ran ahead anyway and the results supported the forum opinions that we ignored. Just our experience. we also have a son who probably suffered fromPANDAS since he was at least 9, but maybe even 2. He is now 15 and was only diagnosed in November 2011. T.Anna

We have been on Valtrex since April and it has helped lower hisCoxsackie numbers. We went off when we saw the numbers decline and wanted to concentrate on MycoP, but he started to react badly so we put him back on Valtrex. So far so good. He does have finger tics and some others, but I haven't noticed how they've changed. We have had blood tests to monitor how his body is dealing with all the medication (Augmentin, Valtrex, Biaxin, Diflucan, etc). HTH, T.Anna

Great! Thanks. T.Anna

Thanks as always. I read your responses to DH and it made us feel much better. Our stress (in addition to having a sick child) is that we want to make sure we have a plan wit hthe school that if DS gets more functional in the summer, we have a way to get him back with his peers and not left back (with a rather unsavory grade). According to his most recent blood work, the majority of numbers are going in the right direction: Strep is down ADNAB from 523 to 300 and ASO 229 to 157 MycoP from 194 to 132 Coxsackie went down but now went back up (we stopped valtrex for a two weeks, becuase we had a few negatives) I spoke with Dr. Storch who strtresed that ERP will only work if DS is very involved. I think we may need something like PEX to help that happen, but feel more optimistic. We will have our Cunnigham results on Tuesday and I hope that will also help with a plan. If not, July 3, we have a full work up appt with NYU. I think some of the backsliding was that we stopped the Luvox and perhaps it was helping a tiny bit with the OCD. Overall, he is so much nicer and relaxed and no self harming, that I'm glad we came off it, but still wish we could find something else that works. Thanks again!!! T.Anna