T_Mom

Hi Buster-- The way that I read both graphs is that you are showing a "presumed" natural drop in symptoms (with no treatment at all it appears.) Am I reading the graphs correctly??? What do the t1, t2, t3 represent? Neither of our girls have shown this type of improvement on their own--I with they had! We have only seen a drop in symptoms after treatment of one type or another--and THEN we could say we saw a saw-tooth recover multiple times (ABX, Steroids, IVIG...) I like to think that baseline has been low again, but I am not so sure yet-- Hope that helps--

Wow! that is fantastic-- can you please share what switch was used in the abx for your son and his history of abx over the past 1.5 years? Thanks for sharing--

sorry, double post

My son's pediatrician is the one who is saying she thinks he has tourrette's and it's not PANDAS because PANDAS is a one time thing. We are having no luck with her and I've called the other pediatricians here and none are familiar with it. His ENT took his tonsils out but I know he won't be any help. Someone pointed me to this study so I contacted them. Got it -- thanks. Hold steady, hopefully when you speak w/ the researcher you will find a doctor then to go to, and the abx to request. That should work in your favor for getting the abx.

OK, I think I understand. As an outside observer, to me, when I read the email note you posted it does not imply that it is because he did well on abx that they are not accepting him -- but rather that he DID do well so they are suggesting you go ahead and try that again, rather then "risking" IVIG at this time (frustrating I am sure but understandable.) I really don't see any reason stated in the note you posted about why exactly he was not accepted into the study. You are asking really good questions here-- and I hope the feedback you are receiving is helpful along the way. All the best to you--

One final thought: Could it possibly be that they think he is not "severe" enough right now, for IVIG? --Any thoughts?

So he responds well, which I assume means his neuropsychiatric symptoms abate with antibiotics, correct? Despite this, the doctor you are seeing won't prescribe longer treatment dose--to at least try for a month? (Find another doctor.) I am really sorry you are going through this--really. Keep pushing, until you find someone to treat him. (--I encourage you to call NIH to get further clarification.)

Hi MamaPanda-- Where do you live??? Maybe someone can help you with a doctor suggestion so you can actually see someone who knows about and is able to treat Pandas. Please consider just driving asap to see someone that can help you. Three to 6 hours away to drive to see a Ps specialist is nothing! (I have made such trips numerous times--) You need to find someone who knows about Pandas to see what a knowledgeable Ps doctor will say re: what could help your son next-- If you end up going to someone out of town, ask them (upon leaving that appt.) to develop a very specific flow-chart of what to do if this happens..and then this happens....and if this happens next...so you have a plan in the child's chart at the office and the nurse for the office can then refer to it if you need to call in information, request a refill prescription, etc. Did you say that you could not get into the IVIG study because he had a good reaction to abx? I would be surprised if this is standard protocol for not including subjects -- especially if he has not been on abx for some time! If I were you I would call/email Dr. S. at NIH to clarify. How about calling Dr. L. (at Yale) and asking who he suggests you should go to then for treatment--to at least get antibiotics to "try" for a month! A long drive for correct treatment is worth the hassle in the long run, believe me!

FANTASTIC !!! This is amazing--a really solid example of a Mom getting the word out! Thank you! I am wondering if it would be possible to start a thread (at the top of the forum) just for the sole purpose of collecting the various tv and radio broadcasts??? That would be a great resource to share with family members--

We were all ready to do Dr C's research scan but then decided that the symptoms our child was having merited at least TRYING IVIG regardless of what might show up on the scan results--(remember it is research and the PET scan radiation is present -- for a small child it is more noteable.) Due to the radiation issues we decided to go ahead and do IVIG, as that question of IF IVIG might help would have otherwise always been there in our case, in our minds. For us, IVIG has been a wonderful, amazing thing-- recovery clearly there, 11 weeks and I cannot tell you enough that it was the best thing we did all year, dramatic differences.

One daughter, who was more tic prone when she was in exacerbation, seemed to have more Ps symptoms w/ fish oil--so she takes Flaxseed, w/ 1000mg of Omega 3 in it. Our younger d, is taking Nordic Naturals EPA with 1000mg of Omega 3 and it seems to be a great help to her--I believe it was Murphy in FLA who recommended a higher EPA concentration for Ps kids, but I may be wrong. It seems to be very helpful for our younger d -- she is now 11 weeks post IVIG, better every week!

I wanted to ask re: the IVIG study. Did you see an improvement after the "real" IVIG? We were told that IVIG has a half-life of around 4 weeks. Thus, if your child had a noticeable improvement following the IVIG and then started dramatically back downhill around 4 weeks, some PANDAS treating doctors recommend a second IVIG at that point. We see Dr L, and have been very thankful to be able to do so, she is very close to NIH in Bethesda.

MacParker's Mom--I am glad to hear you have had such a good response with antibiotics alone, may that continue! MichiganMom--You are NOT failing your child...85% is better then she was-- Have you considered trying a 3 week steroid burst? Dr L does these and our daughter had a remarkable recovery from 85% to literally 110%! with a steroid burst. Even her teacher commented the week she started on steroids, that she was seeing an entirely different child then she had seen all year--and the teacher did not know we were doing the steroid burst!!! The good effects lasted for over a year-- Our daughter was on continual antibiotics (full strength) at the time--and has been for over two years. We first did a month of antibiotics and her reaction was so pronounced that we continued and week to week she got noticeably better--until she plateaued to about 85% and then we did the steroid burst and it bumped her back up entirely.

Yes, my d (13) is on full strength amoxicillan (as if she had strep) and she has been on that dose for over 2 years as a "treatment" -- both to stave off any strep (hopefully) but perhaps what we believe to be an anti-inflammatory/ immune modulating effect (most importantly.) She has horrible bouts of OCD when affected, in the past these included 4 months of severe anorexia and one month of severe crippling OCD. I doubt that a non-Pandas doctor will provide long term antibiotics (though you could try and ask your doctor to call and consult with Dr L, Dr B, Dr K, Dr S-- if your doctor will!) Personally, I would find another doctor. This is not something to play around with and the fact that a doctor will not provide antibiotics is no longer tolerable, if it is necessary-- The experience that the PANDAS treating doctors are gaining, even in the last 2 years as they treat neuro-psych issues with immune modulating therapies and antibiotics, this experience is vitally important to those of us whose children have this horrible, life stealing illness. You don't want this reaction to set-in and the longer you let your child go untreated the more difficult and involved this entire picture becomes. (Certainly in our experience.) During exacerbations we have switched up and to different antibiotics--nothing worked better then Amoxicillan for our oldest d. Yes, she had months of counseling...months and yes, while it gave the family a vocabulary to talk about OCD with, it had little to nothing to do with her getting better--The CBT therapist, (after 5 months) apologized to us as she said she felt she had not been able to help her...Steroids and abx did the trick at the time. Our daughters have not gotten better until the PANDAS was treated medically, physically addressing the brain inflammation has been critical. Hope that helps-- I NEVER thought I would be considering IVIG for her -- as what she is experiencing now is mild compared to where she has been in the past. However, her life is being affected. She is not able to be "free" of intrusive thoughts--and no child should bear that burden.

Thanks for the info.--We are seeing saw tooth recovery (we believe) in our youngest d (11) now 9 weeks post IVIG. Very thankful for the calming of her rages, etc. This is the most amazing thing--to see a child go from raging ODD/OCD to relatively "normal" again...with ups and downs certainly, but she is so much better than she was pre-IVIG it is incredible. Thanks again for the input.

Just my 2 cents worth-- My initial reaction is to tell you I fully understand your hesitation. One wise forum advisor told me (more than once) that the decision to do IVIG was a very personal one. It is. We struggled, and waited, for over a year-- If it is Ps, you will know--as it won't go away easily. IF it goes away, for awhile, or for forever (!) great-- However, IF it does not, then there will most likely come a time (especially if your son has serious symptoms -- as some of our kids have) that you can no longer wait and not do anything. You will fear that the symptoms will reoccur, or that they will fester, and ultimately leave you all scarred, for life. OK, so that sounds a bit melodramatic--but in many, many cases this is true. We are (slowly) recovering from one year of numbing illness...I am hoping (and trusting) that we will all recover fully. It is now 9+ weeks after our younger d's IVIG and we are considering the same for our oldest. Our oldest, who was very severe 3 years ago, still has continuing intrusive thoughts OCD. I don't know where you are located, but if you can get in to see a Ps treating doctor that is what I would do -- to see what they would advise. IVIG is a very personal decision in the end.

Thanks nicklemama--

Does anyone know if Dr K does a second IVIG (or more?) and how long after the first?

Hi Minnesota Mom--Thank you for being in the NIH study, I hope your son gets better (much better) soon! We are 8 weeks post IVIG and we basically saw "glimmers" of our daughter again within the first 48 hours after IVIG. We have also seen "flipping back of the pages", with some reappearing symptoms coming and going. (tiredness, swimming in a chlorine pool,both have affected this we think) Did you say that your child is starting Prozac now? Is that allowed in the study? Is it part of the study? I would have thought that they would want to isolate the effects of IVIG alone for awhile? Interesting--

NMom, I am so sorry you are going through this--Some great parents have weighed in on this so far. I just want to add that your first statement struck me. That you HAVE seen improvement on antibiotics. (I may have missed this, but is he still on them?) IF he had a noticeable improvement on antibiotics, then -- if it was me -- a steroid burst would be my next line of attack. Our older d had a noticeable improvement w/ antibiotics and following that, steroids were a life saver -- more then once. Just my 2 cents worth--all the best to you.

Hi DCMom:) Great to hear that you have had a respite from treatments! Wow! May it continue. I cannot resist responding as your topic heading was a classic: "Zoloft, Antibiotics, Vacation -- Off everything for the summer- what to try first? " (I vote VACATION!) I have nothing else "helpful" to add, but your post definitely made me smile--

I am just bumping this post up to the forum with the hope that some may have a new doctor or two to add -- thanks.

In a class today we were discussing characteristics of autism. Someone asked me if I had ever seen someone "become autistic" at a later age. The question stopped me cold. For a minute I could not answer as all I could think of was what my older d looked like three summers ago when she had her sudden-onset episode. The episode where she went through a month of moderate to severe OCD and then became mute, holding painful positions on her knees on the floor--spit in her mouth, eyes held closed, for 4 weeks...wetting herself, regressed, and we had NO answers--except for DianaP and Dr K talking us through (for which we will always be thankful.) In one video we caught her in bed stretched out, eyes closed, spit collected until her cheeks were puffed, moving her head from side to side. She had choreaform movements of her hands, finger twitching when her arms were extended at her sides. Her reactions during this time were autistic-like, no doubt. I couldn't answer the question, as I wanted to--which was YES, I have seen someone "become autistic" at a later age--...and then that same girl became "un-autistic." I thought about this issue for the rest of the day.

That is great news--I will hope it is IVIG #2 for you that sets the balance in place. Sleep is good for us all--

Good Heavens--this is incredible. I am so sorry DCMom-- I agree that you may want to get Dr T to weigh in on this, just for the record. I think you definitely have a "religious" reason to not vaccinate, no doubt! There is no reason you cannot state that--as you do! You believe it is wrong for your child's best health and well being, how much more could anyone ask for of you? I would leave it at that, period. Good luck, keep us posted-- (I wonder if any of the other Ps docs would be willing to go to bat for you on this?) My best--