T_Anna

Thanks Rowingmom. He seemed much better yesterday. Still achy but not as bad. T.Anna

What do I do, DS was complaining last night about not feeling well. He is sniffling and coughing a bit. He complained that he is having a hard time focusing. He started prednisone yesterday and before that he missed taking his pills 4 times between Sunday night and Tuesday morning because if OCD. He was very chatty and honest about how he was feeling, but I'm concerned that he "caught" something from his siblings. He is currently taking Augmentin, Valtrex, & Minocycline. T.Anna

I agree it does stink. Irritating that the FDA can use their time approving medications rather than going on a witch hunt. T.Anna

Thanks LLM, He will only take pills : ( Even the sublingual will be swallowed, will he get anything from that? I have methylB12 and prob methylfolate at home. Thanks as always, T.Anna

Thanks, we had taken him off, I just couldnt remember why. T.Anna

<<I believe that immune suppressive therapy has its place where quality of life issues are concerned, but only after all significant attempts at addressing infection and supporting the immune system/methylation pathways have failed.>> Unfortunately, that seems to be our unhappy category. I understand your reservations regarding CellCept, etc, but after talking to many physicians and others in medical/medicinal world I can no longer afford to ignore it as a real option. Immune suppressants are commonly and successfully used to treat a variety of different illness. Personally, we are rapidly approaching a year since DS has voluntarily left the house and while he has made many improvements he is still completely enslaved by OCD. We hope to start IV steroids this week with LD IVIG (which is the initial treatment they are doing at Duke by Dr. Gallentine & Dr.VanMater from the video). We are hoping this alone will work without CellCept, but if CellCept or the like, is indicated we will try that too. After making teeny tiny advancements with abx, anti-virals, supplements, HD IVIGs(4) & PEX my son needs more help. He has an elevated SED rate, tests + for Hashimtos Encepalopathy and has high ACE levels. When I first saw this video I was really excited. It was before we had PEX, but I already had doubts about how effective PEX would be. The Grand Round validated that a patient can have AE and PEX/IVIG can still fail. I get flack from people all the time about the combination antibiotics and HD anti-virals (not to mention HD IVIGs). I'm sure my first reaction towards CellCept is how these friends view all the medicines DS is currently on, but it's just the current perception, if it works for a lot of severe PANS/PANDAS teens then we will all be pushing our doctors to treat with immune suppressants when other things fail. Wish us luck. T.Anna DS15

I was supplementing DS with vitamin D3 and he was having some issues with insomnia. I decided to take it out of the mix and his mood is better. Is there a correlation? Also, I read up on his 23andme again and it said to supplement with Mythl-folate. I still have Deplin, is there any reason I shouldn't add it? Gene & Variation rsID Alleles Result COMT V158M rs4680 AG +/- COMT H62H rs4633 CT +/- COMT P199P rs769224 GG -/- VDR Bsm rs1544410 CT +/- VDR Taq rs731236 AG +/- MAO-A R297R rs6323 TT +/+ ACAT1-02 rs3741049 GG -/- MTHFR C677T rs1801133 AG +/- MTHFR 03 P39P rs2066470 GG -/- MTHFR A1298C rs1801131 TT -/- MTR A2756G rs1805087 AA -/- MTRR A66G rs1801394 GG +/+ MTRR H595Y rs10380 CC -/- MTRR K350A rs162036 AA -/- MTRR R415T rs2287780 CC -/- MTRR A664A rs1802059 AG +/- BHMT-02 rs567754 CC -/- BHMT-04 rs617219 AA -/- BHMT-08 rs651852 CC -/- AHCY-01 rs819147 TT -/- AHCY-02 rs819134 AA -/- AHCY-19 rs819171 TT -/- CBS C699T rs234706 GG -/- CBS A360A rs1801181 AG +/- CBS N212N rs2298758 GG -/- SHMT1 C1420T rs1979277 GG -/- Thanks in advance, T.Anna

My son was also a wrestler before he fell off the cliff. He was also wrestling while not being on any abx and he came home with ringworm, his OCD was through the roof and it got worse after every match (we were clueless that it was pandas and he needed to be on abx until it was too late). I would recommend high dose abx, especially through wrestling season. Also I would try to encourage him to wear the long sleeve wrestling shirt and legging at least to protect him during practices (DS started to wear it toward the end when his captain told how he got less rashes). The other kids and the mats pose a huge threat to our kids. During one match a kid licked my son, it was gross then, now I probably would have demanded a strep test too ; ) Is that 875 Augmentin a day? DS is on 2000 XR and he only weighs 120lbs. T.Anna

DS's integrative doctor asked why we were considering IV steroids rather than oral. Can someone give me a solid answer? I know many have had more success with IV over oral, right? DS did OK on oral steroids (80mg for 15 days), but it was rather minor improvements. Thanks, T.Anna DS 15

Not sure how far away you are from NYU, but we used a Senior Care ambulance to get to the hospital (DS. Preferred it). Also because we were admitted through the ER insurance covered the ambulance. T.Anna

My DS used to complain a lot of stomach pain and we haven't heard that in a while. We did end up taking him off Azithromycin, because he was complaining of palpitations (interaction between Azithromycin and Diflucan). T.Anna

What dose of Minocycline are they prescribing? T.Anna

Great news!!! Keep us updated.

Just wanted to know how your appointments went at NYU? T.Annaa

Thanks Mayzoo. I love drugs.com. I'll have to hold off. I am having trouble getting him to take pills more than twice a day. He was just taken off Azithromycin since he was having palpitations, that may have been the insomnia culprit. After our appointment on Monday, I will try to re-introduce pills 3x a day. Thanks again. T.Anna

He is on Gaia thyroid support now. We have added Reservatrol and Olive Leaf Extract lately can either of those produce insomnia? Can it be herx? He had a really rough time with his bathroom rituals, but was still the improved and accommodating guy later. I thought we waited long enough after introducing each new supp, but the sleep things had been going back to last Spring when he had insomnia. Can it be the D3 (2000mg)? Can I give magnesium with abx? I always thought it needs to be 2+ hours away like probiotic. Thanks as always, T.Anna DS15

Anyone have any advice on sleep aids other than melatonin? DS's insomnia has come back : ( Thanks as always, T.Anna

From the feedback I got after our appointment with Dr.N. I would not suggest Lyme or pandas. Let Dr.N find a diagnoses and a way to help your daughter. You came because your child is in trouble and need him to figure it out. T.Anna

Tomorrow night at 9pm (ET) Join show host, Marcel Cairo, for a LIVE post-conference panel discussion with some of the headliners of the NE PANDAS Parents Conference that took place on November 9 & 10 in Providence, Rhode Island. Call in with your questions. Show Guests include: Dr. Rosario Trifiletti, Dr. Keneth Bock, Dr. Ditran Agalliu, Organizer, Meagan Greenstein, and participating physician, Dr. Allen Lewis.

Tomorrow night RadioPandas will have Dr.Bock, Dr.Agalliu and Dr.Trifiletti. They promise to recap some NE conference and take calls. Sounds interesting, especially to those unable to attend. T.Anna

Go with the stronger abx. Why mess with the amoxicillin unless it is giving you a real improvement. T.Anna

You can PM me, since I have listed their names. Thanks, T.Anna

No. We only saw Dr.N and the PA. There is a Dr.Davinsky there who has a good reputation. If you go, just make sure you see an MD and not just the PA

Thanks, I'll let you know what happens. There is only psychologist he relates to now, the school psychologist, but I doubt he'd open up. After reading your conference notes, I can attest to the fact that doing CBT while in a flare is a bad idea. DS was going CBT 3x a week when he fell off the cliff and he completely burned out (despite doing really well in the beginning). T.anna

We did it after DS had two IVIGs and we wanted to make sure we knew what we were dealing with. Took a month to get results, after I write a few letters and doctor called to urge an expedite. Results: highly likely We used it to pursued PEX. He was on abx.