T_Mom

Dear MarknLA-- I can't tell you how much it means to read your post--We do ALL thank you-- Oh, that we might hear from other Swedo originals here...Anyone out there lurking? Please post! Perhaps it could be one of the "important info." threads at the top of the page. OK, one question: Dr. Susan Perlmutter told me that they had found anti-inflammatory effects of Amoxicillan in research at NIH. Can you give us more details about your experiences. If Susan Perlmutter treated your daughter, but only with antibiotics-- was your daughter on "full strength" and which antibiotic, and for how long? (My d. has been on full-strength now for 9 months--still not 100%, but close.) Thanks-

Manda, SO glad to hear your dear child is home today and doing better--will keep you in our prayers. Pat: Wow-- These words in your post just really hit me after everything you had been through with Gaby: "She has been doing well the last 5 months -" That is great news today to hear, thanks for letting us know--

Hi Char, I think you'd really have to ask Dr. Latimer that question. She is wonderful -- insight and experience. She looks at the "whole" child and determines treatment individually. I'd call her and have a phone consult re: your child's symptoms and history. Also, because it is good to have a local doctor who is close enough to drive to, I might consider trying one or two of the doctors in your area that you have heard are treating PANDAS, you never really know what they will do until they see your child-- Antibiotics may be enough...at least to get started (if you haven't been on them already.) All the best--

Hi -- I am sorry, I have no idea. I only know once (in our case) is all the dogs are going to get-- It was expensive to do the culture -- if I was going to do it again, I'd probably just treat them with antibiotics as the culture was iffy anyway--since difficult to reach.

Manda--Your daughter will be in our thoughts and prayers through out the day. Please let us know how the day goes.

YEY!!! Melanie that is good news indeed--YEY!!! Wonderful--

We have two big dogs and our vet said to really swab them he would need to put both to sleep--He went ahead and did as thorough a swab as he could, and we put both on a strong round of antibiotics just in case.

Smartyjones, this is an interesting question you raise: " ...is behavior a reliable indicator of healing?" All I can add is that I hope so! We treat and observe as parents the best we can--what else can anyone do. The: http://www.pandasnetwork.org website does a great job of summing up what we know, and don't know at this point--

Bronxmom2-- I agree with DCMom, it took us time...one step forward, two steps back on the antibiotics-- I think it is weekly data we should be looking at rather than daily--know what I mean? Take care--

Hi Deanna, When she was ticcing or OCDing we encouraged our d to say, "It is just a bad habit sort-of-thing" if other children asked about it-- Seemed to suffice for the 10-12 year old mind.

Welcome Jennifer-- I am so very sorry your dear child has been going through this tough, tough time...and that you had to find this forum!--but it sounds like you have been able to get some excellent support along the way and are well tied into some great resources in your area. This forum of parents is both honest and caring--concerned for each other and our children. Because most of us are suffering some form of PTSD don't let that scare you! It is a caring group and an understanding honesty prevails. Welcome.

Hi Pixiesparents--I guess the question in my mind is IF a child were to have strep shouldn't she/he be on antibiotics regardless of getting IVIG within the week? I honestly do not know enough to know, but I'd suggest a call to Dr. K's number this weekend to definitely find out-- Did Dr K know she was saying she had a sore throat? What if she does have strep--would this impact the results? The whole issue of untreated strep may have gotten some of us into this situation in the first place, know what I mean? Is there any problem with giving antibiotics prior to IVIG? Does anybody know? --Colleen? EAMom? -- oops, even as I wrote this EAMom was posting (above). Pixie's parents, you are in our thoughts and prayers as you sort this out. If you get a definitive answer from Dr K I'd be curious to know what he replies-- I guess to be honest, if it were my child I'd just ask him if there is any harm in starting the antibiotics now and go ahead and test for strep just to document.

By all means I would get her tested for strep too--right away. A minute clinic is fine as long as they will "develop" the culture for the 3 day period necessary-- I can't help wondering if this would be different if she was on antibiotics. All the best--

Pixiesmommy--Thank you so much for posting this!! Good to know what Dr K suggests certainly. Also, our Whole Foods has a two-for-one coupon on the "Good Belly" fruit juice probiotic juices right now--our girls love them.

Hi MomofGirls--I am so sorry you are going through this--For us, it was up and down as to "what in the world was causing OCD and tics" ... until we saw our d respond (as in there was a noticeable decrease in symptoms that we could observe) when she was on Amoxicillan...One time it was within 48 hours. Some of the best advice I have ever gotten was reading that we should consider a month of antibiotics--and Yes, then we saw a continuing elimination of symptoms. I truly hope the Keflex works for you. Amoxicillan worked for our d. ps--Our d must have had undetected strep at some time prior to the first episode (which we thought was anorexia) -- she has had OCD and tics which go away with antibiotics or steroids. Cunningham results were high but we are one of those families that never had a pos. strep test to "show the doctor"!

Hang in there--We have not done IVIG but from the posts on here--it is apparent that there are ups and downs in behaviors even as the healing is progressing-- (If you step back and look at her progress overall has she progressed from week to week?) Could you be seeing the "turning back the pages" -- that some parents refer to which appears to be a phenomena that occurs as the brain is readjusting and healing after IVIG? I wondered at times if that was what we were seeing when my d was responding to antibiotics and at the time of the two steroid bursts--when she was progressing but seemed to have symptoms appear again, and then leave... There is an up and down with the healing that it appears children exerience. Diana, or other parents who have gone through IVIG can speak better to this than I can--I hope you can rest tonight, is there anyone you can call in for in-home support while your husband is away?

Hi Dan--First let me say I am really sorry you guys are going through this right now-- I know how -- if the symptoms are "bad" -- it is all encompassing. Did Dr K suggest putting her on Augmentin now? When we did the initial steroid burst we also started antibiotics (different doctors) When she is able to go back to school you will know--until then, hang in there. All the best--

Also, at the top of the ACN PANDAS website there is a "Helpful Threads" column and one of the threads in there is a listing of doctors that people have seen who were helpful.

Dawn--Your previous email info is very helpful! I have cut and pasted it here to add to this thread--hope that is alright. T Hello from Iowa! There are so many parents from the coasts. Just thought I would check in from the midwest for the first time. I will share more about our PANDAS saga in another post. It's a bit different, yet so much the same. We have lived it for as many years as PANDAS has been an acronym, but have danced around a true dx (alphabet kid) until last October. I have been in contact with Diana P. and we have been to Dr. K., and have been reading the forum frequently. I'll share more later. I thought I would throw in some explanations right from questions I posed in emails to Dr. Cunningham. I hope this is OK. In the first set I asked some questions and then she used my email and answered them. The other must have been an answer to some other question I had. I hope this is helpful. -Dawn Is excessive CaM in and of itself hard on the brain/body?? The CaM is elevated inside neuronal cells and is not outside the cells. We think that the antibodies trigger it. Will IVIG take that out or will getting the strep antibodies out of the blood stop that. IVIG is known to help but it's exact mechanism is not known. It provides immunoglobulins that may prevent infections which could help indirectly to prevent exacerbations. It may have other mechanisms. Do the antineuronal antibodies fall as the strep titers recede because the CaM goes down? This may happen but the anti-streptolysin 0 titers or anti-DNAse B titers could drop and the antibodies inducing CaM may stay elevated. They are not the same antibodies. That there are any antineuronal antibodies is not good? High CaM, low titers---now what do we have or should do. The high CaM indicates that your child may have antibodies that signal neuronal cells to release dopamine and cause the PANDAS. the other antibodies are not highly elevated and are within normal levels as you will see when you get the hard copy in the mail. We are trying to study the symptoms and correlate with the test results. I truly think he has battled this for years. Does his pattern (labs) match other kids that may have gone undx'ed for years? Children with these diseases have one of them at least elevated. It is good that the anti-neural antibody titers are relatively low and are in the normal range Thanks for being patient with us parents out here. Dawn The anti-neural antibodies are tested directly in the enzyme linked immunosorbent assay or ELISA which tests directly for antibodies against neural antigens lysoganglioside, D1/D2 receptors, and tubulin. We are looking at the correlation of these antibodies with the symptoms. In the Calcium-Calmodulin dependent protein kinase II assay, we are performing the test as follows: the childs serum antibody is placed onto neuronal cells in culture in the lab. Then we take the cells and look to see if the CaM kinase is elevated in the cells over the basal level normally present in the neuronal cells. The test result indicates that the serum (antibody) triggered the CaM kinase activation above the basal level. Basal level is set at 100%. We send the graph that has been published to indicate where your child's results are located. Your child's result was high at 184% which does fall in the PANDAS range on the graph that we sent or you will receive next week. I hope this helps.

That really saddens me-- Dr. Sokol's articles re: anorexia cases associated with PANDAS gave us the first insight into our d's sudden-onset anorexia (age 9) (which left as suddenly as it came.) That research was a great help to us.

Hi Karen, I agree with everyone's opinion that the bloodwork may be helpful and uncover issues. My own vote would be to do it all at one time and then go and get her a treat--new books work, as does ice cream in our family. For us the Cunningham test was very valuable and if you do it at the same time you then have those results to compare as a "baseline" if another exacerbation should come about (I pray it never does.)

YEY!!!! MomMD this is GREAT news! I'd take "being spoken to a few times" any day after what you have been through-- I am thrilled for you.

YEY!!!! MomMD this is GREAT news! I'd take "being spoken to a few times" any day after what you have been through-- I am thrilled for you.