T_Anna

Duplicate post

Not sure, but we just had IVIG today (our 4th) and we have never given Tylenol. I believe you can ask the nurse to give ibuprofen. T.Anna

Dr. Cunnigham's last study was conducted with Tel Aviv University. There must be a push for research there as the CNN Dr.Gupta Cannabis documentary also focused on a farm there. What does it mean if my DS's d1 and d2 were in the average? Our camKinaseII was very high at 209. T.Anna

<<Is he going to be on propanolol long term, or is that a short-term treatment?>> We'll see, we haven't re-run the TSH numbers in a while, so cannot see if it's helping. Overall,somethings seem to be helping since we returned from the hospital and PEX. Since the PEX itself didn't seem to be a rest for us, maybe it just cleared things up so that these treatments are working (IVIG, Steroid, abx, anti-virals, propranolol, etc). By working I mean seeing more of our son and better attitude, everything else is still ruled by severe OCD. Today, the school's psychologist is coming to visit, haven't told DS, but between a nurse, nurse supervisor and IVIG I didn't think it would be noticed that much today. T.Anna

Glad to hear things are improving. T.Anna

I'm thinking it might be a combination. I definitely see him pull, but it also started after we added beta blockers for his thyroid issues. I took it down by half so we'll see if that has an impact. Having another HD IVIG tomorrow. Thanks all!! T.Anna

We had TPO of 32, but the thyroid antibodies and SED and ACE rates were VERY high. T.Anna

Irfan have you ever used a product like a Gaia Thyroid Support? T.anna

Thanks Susie, he is also on Diflucan (fluconazole), but he has been on that much longer. It really could just be from the pulling, but DH observed that it seems really easy for the hairs to come out. T.Anna

DS15 has been doing a tiny bit better (still far from functional), in the past month (month and a half) he has been twisting and pulling out hair, Trichotillomania, he now has a huge bald spot (like a balding male adult) on the top of his head. Is this a result of the meds? Plain anxiety (do they pick out SO MUCH hair?)? Nutrition? He just sits there and picks out hair, it's driving me crazy. As many strides as we've made forward this is really pushing my buttons. We added propranolol about a month+ ago for thyroid. I just saw that it can cause hair loss (rare side effect), doctor said half the dose and see if it helps. I know that trichotillomania is an axiety/OCD things, but why is it so easy for him to pull them out or is this unrelated? TIA, T.Anna

No to MTHFR. We are in NY, so definitely a possibility, but even integrative doc thinks we'll have better luck first attacking on the AE front. T.Anna

In the last radio pandas they discuss a study where Alzheimer's patients are given IVIG. T.Anna

For example: Doxycycline was 200mg a day (prob should have been double) Azithromycin was 250mg a day (should have been 500mg as we did later with Dr.S). T.Anna DS is 5'6" is about120lbs

I am listing our mistakes, because maybe this will help someone starting on the crazy PANDAS road. Since we have approached our 1 year anniversary, here's an overview of DS's (15) trek thru PANDAS #%^. MISTAKES: 1. In the beginning (November to January) We only did 10 days abx and antivirals instead of 30 days or more. 2. We tried SSRIs and created more rage as we upped dosage 3. We went to IVIG before being on abx/antivirals consistantly 4. Doses always started conservatively 5. We didn't know that we should ASK for higher & longer doses. 6. We blindly trusted our CBT therapist who had no business involving herself in our medical treatment. Here is out history: Spring of 2012 - We notice OCD and choreoform movement. Goes to psychologist. Summer 2012 - Frequency urinating & sudden bed wetting. September-October 2012 - No longer functioning with OCD trouble attending school, after FLU vaccine. November 2012 - We start CBT 3x a week, it helps, but now bathroom becomes hours (4-19 hours). December 2012 - He is dx with PANDAS/PANS: Strep, MycoPlasma, EBV and Coxsackie. StartAugmentin, then add Valtrex and Biaxin (only 10 day doses) + Steroid Burst December 26 2012 - Realize that DS is crying when off abx, get another 10 days Biaxin & Valtrex (10 days only) again and Luvox 25mg upping slowly to 75mg January 2013 - He is now crying a lot, cannot attend school. January 4 2013 - We retest his blood and Strep and Coxsackie have gone up. January 21, 2013 - Start Doxcycline (200 mg) and see improvement in general mood and crying bouts. January 24 -Last day he leaves the house or showers. January 25, 2013 - Stopped CBT, therapist in desperation playing mind games...nothing is working. February 2013 - Start steroid taper, add Azithromycin (250mg). February 14 2013 - HD IVIG February 28, 2013 His eyes no longer so dilated, better able to hold a conversation, and engage. March 14 2013 - HD IVIG April 5, 2013 - No real progress from IVIGs (better mood, no rages, but still not "doing" anything)Add Augmentin XR again 2000/mg a day Saving Sammy dose. April 10 2013 - Augmentin seems to help, add Valtrex XR and NAC, ubiquinol and folinic acid and other supplements. April 18, 2013 - New psych doctor increases Luvox to 100CR, added Deplin, increased NAC (Nac-Acetyl Cysteine) to 2400mg. April 30, 2013 Added Diflucan as we suspect he has yeast. May 6, 2013 Increase Augmentin to 4000mg/day, Remove Deplin. May 12, 2013 Take him off NAC, suspect it's making him more emotional (crying more). June 17, 2013 Cunnigham test (Molecurela Labs) shows high CamKinaseII and PANDAS highly likely June 28, 2013 Dr. S switches meds to Azithromycin only (500mg/day) July 30, 2013 Admitted to Maimonides for 5 plasmaphreresis treatments August 21, 2013 HD IVIG to replenish IgGs from plasmapheresis September 9, 2013 Currently taking Augmentin XR (2000/day), Valtrex, Proporanol (for low TSH) and Diflucan. September 17, 2013 Added Minocyline to help, as it's known to break through BBB. September 24, 2013 Have seen reduction in ticcing and possible improvement overall. October 4, 2013 - blood tests are positive for Hashimoto's and Neurosarcoid, We start oral steroids. Present: Pros - He is conversational, can focus on his computer sketch-up projects, nice to his siblings, respectful, talks with friends and enjoys being social. Cons - He cannot leave the house, doesn't eat great, only goes to the bathroom (BM) on Sunday nights, doesn't shower or change his clothing. Only eats well from Thursday through Sunday.

Hi PowPow, I hope I didn't make it sound better then it is. After the blood tests came back with Hashimoto's Encephalopathy and elevated SED and ACE (markers for Neurosarcoid), we decided to try another oral steroid burst, this time at 80 mg a day. He did well, he was in a better mood, able to discuss school and illness a bit (usually a taboo subject) and not fatalistic. We re tapering down now and it's still going well. And after this week's IVIG we hope to do an IV Steroid. Unfortunately, I still haven't found anyone in the area willing to treat this in a hospital setting. The doctor who did our PEX won't touch the encephalitis at all and I left several messages with Dr.Gs office and haven't heard back from them either. So we are doing AE treatment "ad-hoc" and without immune suppressants since no one here wants to delve into those. Our Dr.G appt is Nov 11 so we'll see if we hear back and get any further on our own. I also have started with an integrative and we will try her immune support supps starting the end of the week too. T.anna DS15 - now a nice kid locked in a homeless man's body.

Tu4four, recently they are finding that more and more severe PANDAS cases are testing for elevated ACE, SED and even Hashimoto's encephalopathy. My DS has been stuck in severe OCD since last Fall. Since last January we have treated with IVIG, PEX, abx and antivirals. Everything has brought him microscopically back to us, but he is still home bound and stuck. We are starting to treat this as AE and we have seen more of our son lately (past 2.5 weeks). The steroids have made a difference too and we hope that the IVIG this week will also help. We have added an integrative doctor who is also a board certified neurologist. Her opinion regarding Lyme testing for DS is that even if tests positive it's more important to solve the faulty immune system than going after illness with more abx. She believes that his system is so compromised that he'll test positive for any illness that he has been exposed to. T.Anna Ds15

Is clomipramine an ssri? T.Anna

I certainly hope he is wrong. There are many here that are seeing success in older children with monthly IV steroids an monthly 1gram IVIGs and sometimes immune suppressants like CellCept too. My son also prob had this for years and we didn't notice until a year ago. We haven't been cured with PEX, IVIG or abx, but they have all helped, so we hope we will get him all the way back. T.anna

So the ped would prescribe abx for all the kids if one tested + for strep? And for 30 days? Just curious as we seem to attend Strep Academy : / T.Anna

We did it at home all three times. I spoke to a few doctors and a friend whose father had IVIG as part of his cancer tx. DS doesn't have asthma or any other complications so we felt secure having it done at home...especially since DS won't leave the house. T.anna

Anyone else done the hair test? Due to trictollomania, hair test is an easy for us. T.Anna

Qannie, I am so sorry about your experience. As if it's not hard enough to have a child who is suffering (no matter what the reasons), that there are institutions full of medical professionals without compassion is terrible. Living in NY, I think the hardest thing for friends/relations to understand is that there isn't some nice shiny hospital with a fancy name that WANTS to help our children. I constantly get calls of "you need to call my guy, he's so smart and I'm sure he knows all about this." Hugs, keep strong and be thankful for the rogue doctors who understand and want to help. Sounds like you have two which is double what many of us have found. T.Anna

Prayers! T.Anna

Great video, thanks. Wish me luck. I'm going in without a real plan, just want to hear what they have to say and what options are available. Thanks for all the input! T.Anna

DS is enrolled in a private school, so they have some flexibility as far as curriculum. Would it be better to hire my own teacher to come in and teach him a subject, i.e. math (his favorite subjects were math & science)? I'm sure NYC has a few options and he qualifies medically, but I don't want a history teacher when we should probably start with math (that's one of the few cumulative subjects). Thoughts? T.Anna