TiredMom

Quick question: my daughter just finished HDIVIG on Wednesday night. Seemed to do very well side effects wise, mostly general aches and pains. Then last night she started to get stomach pain. We knew nausea was possible. I'm giving her Zofran every 6 hours, it helps some, but not 100%. She's miserable. Seems the nausea subsides, but there is residual abdominal pain. I have calls in to our doctors, but I'm wondering if anyone had a similar reaction/advice. Thank you.

Wisdom_seeker - is there anything noteworthy you can share on IVIG Protocols? This is super timely for us, too. Dr is trying to set up HDIVIG, but spread over 4 days instead of 2. I'm a little worried, since I don't know what the precedent is for this, and I'm also worried the body might see it as a low dose IVIG, which I understand can cause problems. I'd be grateful for anything you can share. Thank you!

Here is a bit more about akinetopsia. http://psychology.wikia.com/wiki/Akinetopsia

I'm not sure if this article describes what he's experiencing. It briefly mentions strokes and epilepsy: http://brainblogger.com/2014/10/09/brain-trickery-seeing-in-slow-motion/

Two things that have helped us when in this same situation is Motrin, given at full dose for several days, and also restricting electronic screen time (computers, cell phones, tablets). The blue light that is emitted can really disturb your sleep patterns. I hope she (and you) gets some relief soon.

"I contact NIMH about PANDAS doctors in the bay area and I received a call back from someone who works with Dr. Swedo. She gave me the name Dr. Charlotte Hamilton MD @ 900 Welch Rd. in Palo Alto (tel# 650-321-5321). I was told she is a PANDAS expert who worked with Dr. Swedo at NIMH. Has anyone heard of her? Andrea" Hi Andrea, I just got off the phone with Diana. She strongly recommends Margo Thienemann, as do I, for our PANDAS children. She shares office space with Charlotte, but has more current experience with PANDAS. Her number is 1 650 324 3241. Abby answers her messages. Tell Abby your child has PANDAS, and you will get an appointment right away. Best wishes - Peggy

FYI Parents, A while back I had posted that PANDAS information had been taken off of the revised OCD Foundation Website. Laura had a contact person that worked closely with this organization, and confirmed fo us that they were upgrading the website in stages and that PANDAS information would be forthcoming in the next phase. We were all encouraged at the time to contact the website with our input/concerns. I am posting below the response I received today - it looks good. I'm thinking they should get a look at the great FAQ and NIMH proposal Buster has put together... -Peggy --------------- Peggy, I agree with everything you said below. We believe it is important to get information about PANDAS out there! As you know there is a lot of contradictory information out there about PANDAS. I am currently in a discussion amongst members of our Scientific Advisory Board and parents of PANDAS diagnosed children about what information is going to be the best to get out there. Evelyn Stewart - a pediatric OCD researcher and therapist - is currently spear heading the writing of this information. She holds appointments Massachusetts General Hospital, McLean Hospital and Harvard Medical School. She works closely with Dan Gheller and Michael Jenike. She is the chair of the Pediatric OCD Committee on our Scientific Advisory Board which also includes individuals like Aureen Wagner and Fred Penzel who are very senior in the field. I am confident that when information about PANDAS goes up on the website that it will be clearly thought out and based on the most recent research. Thank you for your feedback. Please let us know your thoughts as we continue to add information about PANDAS to the website. Jeff Szymanski, Ph.D. Executive Director International OCD Foundation Phone: 617-973-5801 Fax: 617-973-5803 email: jszymanski@ocfoundation.org www.ocfoundation.org

God bless you, Dr. Trifiletti! Thanks for getting the word out, and thanks for keeping us informed. Break a leg ;-) Peggy

"A revised version, see what you think... " Way to go, Buster, this is beautiful.

Hi Buster, I know one of us posted that she "felt like a wiseguy" calling you Buster. I prefer to think of you as a MYTH BUSTER :-) You're suggestions for the website look fantastic! Just a thought, I'd be tempted to add anorexia in the symptoms part. What say you? Peggy

Laura, That's great that you know someone connected with the organization who may know if eliminating references to PANDAS was a deliberate decision, or an oversight of some kind. Seems like odd timing to drop references to PANDAS when there's been so much activity in the media recently, like the sneezing girl, and Saving Sammy, the Boy Who Caught OCD, not to mention things like Columbia reproducing PANDAS in mice. Seems even more odd since they have a section specifically for related diseases that can appear like OCD, covering everything from Aspergers to TS. Peggy

"I am very angered right now." I completely understand the anger. I'd love to know their story for removing PANDAS from their website. This brings to mind a comment Dr. Latimer made to me on a phone consult last month... She said in all her years in medicine, treating a wide variety of conditions, she's never seen a group of parents like the PANDAS parents. Never. She said they are extremely well informed, are determined to cure their children, and DO NOT TAKE "NO" FOR AN ANSWER. What a great compliment you all received from a great lady... Let's see if we can change some minds. Peggy

"Is the OCD website you are refering to the OCFoundation? " Hi Vicki, I did a fast search, and I think it is the same organization. I couldn't find anything on PANDAS, please let me know if I missed something (it wouldn't be the first time I did sent a detailed email to them covering a lot of ground, hopefully they will become more open to getting the word out on PANDAS.

There's a new international OCD website that I just learned about through the OCDparenting yahoo group. I searched, and although they had section on related diseases, I couldn't find any info on PANDAS. I also noticed they give a certain number of grants each year for OCD research. I am going to contact the group, and see if they will add something on PANDAS, and tell them about Cunningham's work (my understanding is that she doesn't have official funding for the new year). Since there is power in numbers, I thought I'd list the website here in case anyone else would like to contact them for the same purpose. Best wishes, Peggy http://www.ocfoundation.org/ index.aspx

"MomMD- It is in the eyes. " Absolutely. All I need to know how my dd is doing PANDAS-wise is to look in her eyes. Her therapist has noticed this, too, and calls it "the look". When they are clear and sparkling, I am at peace. When they get that dark, lost, far away look - well, you all know. Peggy

'Worried Dad' date='Nov 17 2009, 04:39 PM' post Hah - I've been going through beer a lot faster than I used to. PANDAS = Parent Absolutely Needs to Drain Another Sixpack! Hey Worried Dad - thanks for the belly laugh, I needed it! Peggy

I found this: http://www.sciencedaily.com/releases/2008/...80102122300.htm

"Is anyone else just using antibiotics to try and treat this. My son who is 12 is on his second course of zithromax. 3 months later and the H1N1, things just seem to fester. Of course the flu did not help, but I wish I could do ivig. Is anyone else waiting this out and just trying antibiotics. I do get encouragement from the Saving Sammy story. I am so scared that this is not going to resolve itself and my son has to endure symptoms he shouldn't." . We're in the same boat as you, although we are meeting with an Immunologist soon to discuss the possibility of IVIG. My daughter has had 3 major PANDAS episodes. One when she was 6 1/2, which we've only recognized as clearly PANDAS in hindsight, then one at 8 1/2 with a reoccurring viral infection, and then at 9 with Fifth's disease. Throughout this time, she retained "quirks" that I feel was something like a low grade infection festering that did not allow her to go back to her baseline. About 1 year ago, we started antibiotics and a steriod burst, and saw immediate improvements, but have also had slow, steady improvements on top of that that made me feel like the antibiotics had done their job, then the brain was healing. She's very good now, however, once in a while I'll see a behavior break through and assume she's been exposed to something, and she's fighting it. I've tried reducing her antibiotic dose 2 times, and her mood and behavior worsened both times - so we're keeping her at 250 azith. She's about to turn 11, and weighs 90lbs. Her CamK number was 144 in September. I'm haunted by memories of her worst, unbearable times, and pray that she'll never suffer like that again. I feel a heavy responsibility to make good choices for her now that we'll all have to live with. I wish we had crystal clear criteria for when to do which treatment... Dr. K has indicated that he believes IVIG becomes ineffective after puberty, but when I spoke to Dr. Latimer, she didn't feel that was the case. I'd feel better if I could be sure I wasn't running out of time for IVIG to be an option....

Thanks for doing this, Buster. I think it's a great idea and would add my dd's info - let me know what you need. -Peggy

This study will appear in the medical journal "Lancet" tomorrow. Prophylactic Acetaminophen Reduces Immunogenicity of Childhood Vaccines Children given acetaminophen with vaccinations have lower rates of fever in response, but the vaccinations produce a lower immunogenicity, reports a Lancet study. Researchers, including some from the sponsoring vaccine manufacturer, followed over 400 infants receiving primary and booster immunizations. Half received acetaminophen via suppository in three doses over the first 24 hours after vaccination, and half received no prophylaxis. The percentage of children with a temperature of 38 degrees C or higher was significantly lower in the acetaminophen group by some 40% to 50% both at primary and booster immunizations. However, vaccine immunogenicity was lower in the acetaminophen group — significantly so for some antigens, e.g., all 10 pneumococcal serotypes after the primary immunization. The authors hypothesize that the effect could result from acetaminophen' s preventing inflammation. Over 95% of all children had seroprotective antibody levels, but researchers argue that antipyretics "should ... no longer be routinely recommended" with vaccination. Editorialists agree, calling the case "compelling. " Articles The Lancet, Volume 374, Issue 9698, Pages 1339 - 1350, 17 October 2009 <Previous Article|Next Article>doi: 10.1016/S0140- 6736(09)61208- 3Cite or Link Using DOIEffect of prophylactic paracetamol administration at time of vaccination on febrile reactions and antibody responses in children: two open-label, randomised controlled trials Original Text Prof Roman Prymula MD a , Prof Claire-Anne Siegrist MD b, Roman Chlibek MD a, Helena Zemlickova MD c, Marie Vackova MD a, Jan Smetana MD a, Patricia Lommel BScb d, Eva Kaliskova MD e, Dorota Borys MD d, Lode Schuerman MD d Summary Background Although fever is part of the normal inflammatory process after immunisation, prophylactic antipyretic drugs are sometimes recommended to allay concerns of high fever and febrile convulsion. We assessed the effect of prophylactic administration of paracetamol at vaccination on infant febrile reaction rates and vaccine responses. Methods In two consecutive (primary and booster) randomised, controlled, open-label vaccination studies, 459 healthy infants were enrolled from ten centres in the Czech Republic. Infants were randomly assigned with a computer-generated randomisation list to receive three prophylactic paracetamol doses every 6—8 h in the first 24 h (n=226) or no prophylactic paracetamol (n=233) after each vaccination with a ten-valent pneumococcal non-typeable Haemophilus influenzae protein D-conjugate vaccine (PHiD-CV) co-administered with the hexavalent diphtheria-tetanus- 3-component acellular pertussis-hepatitis B-inactivated poliovirus types 1, 2, and 3-H influenzae type b (DTPa-HBV-IPV/ Hib) and oral human rotavirus vaccines. The primary objective in both studies was the reduction in febrile reactions of 38·0°C or greater in the total vaccinated cohort. The second objective was assessment of immunogenicity in the according-to- protocol cohort. These studies are registered with ClinicalTrials. gov, numbers NCT00370318 and NCT00496015. Findings Fever greater than 39·5°C was uncommon in both groups (after primary: one of 226 participants [<1%] in prophylactic paracetamol group vs three of 233 [1%] in no prophylactic paracetamol group; after booster: three of 178 [2%] vs two of 172 [1%]). The percentage of children with temperature of 38°C or greater after at least one dose was significantly lower in the prophylactic paracetamol group (94/226 [42%] after primary vaccination and 64/178 [36%] after booster vaccination) than in the no prophylactic paracetamol group (154/233 [66%] after primary vaccination and 100/172 [58%] after booster vaccination) . Antibody geometric mean concentrations (GMCs) were significantly lower in the prophylactic paracetamol group than in the no prophylactic paracetamol group after primary vaccination for all ten pneumococcal vaccine serotypes, protein D, antipolyribosyl- ribitol phosphate, antidiphtheria, antitetanus, and antipertactin. After boosting, lower antibody GMCs persisted in the prophylactic paracetamol group for antitetanus, protein D, and all pneumococcal serotypes apart from 19F. Interpretation Although febrile reactions significantly decreased, prophylactic administration of antipyretic drugs at the time of vaccination should not be routinely recommended since antibody responses to several vaccine antigens were reduced. Funding GlaxoSmithKline Biologicals (Belgium). Take care.

I think I'd be celebrating to find a doctor like him in my area - that's no small victory. How wonderful that you're able to build a network of doctors in this way. I'm sending you my very best wishes.

I really have mixed feelings about the segment. I'm grateful for any attention PANDAS gets, and I cried with joy to see Sammy so healthy and happy. However, this felt like a "PANDAS Lite" segment. No mention of the fact you have to take antibiotics for a very long time, that sometimes they stop working, that sometimes you need steriods, IVIG, or PEX. That once this horrible process starts, ANY infection can be the next trigger - so only looking for strep won't help. NO mention of Swedo, Dr K or Dr Cunningham, just to name a few. How about mentioning the Latitudes support group, or PANDASnetwork.org? Everyone, including Dr Nancy, was acting like this was just discovered today, when Swedo's paper has been out for A DECADE.

"Overall we're doing better" That's great news. All my prayers and best wishes that the healing continues, and those improvements keep rolling in! Peggy

"At what point do the steroids kick in and show improvements? Did it take time or was it right away? I feel so sick right now. I can't control this kid anymore." Michele, I'm sorry things are so tough right now... Hang in there, with my daughter I noticed a dramatic improvement on day 5. Hoping this medicine works for your son, and wishing you peace - Peggy