T_Mom

Faith, After the our son's first PANDAS episode and diagnosis in May, my husband and I started looking back. His first strep infection was in Kindergarten (he is a 4th grader this year) and that was when he started having night terrors. They were off and on through the years but last school year they were much more frequent and May was when he had his melt down and the symptoms. He was playing in a basketball tournament, called time out, went to the bench and looked at my husband started crying that he couldn't breath. He was having a panic attack. 2 days later he started on a high dose of Amox, after about 2 months on the Amox the panic attacks stopped but still had alot of anexity about eating and choking. And this is a boy that can out eat me!!!! The panic attacks were so severe in the beginning, it was awful. He has been on an antibiotic since May. He has been Amox (during the beginning), Keflex (had another strep infection in Aug, symptoms not nearly as bad and only lasted about 2 weeks but had also just started the 30 day steriod burst), Cleomycin(this was in July when we seen an infectious disease dr that knew nothing about PANDAS, but I was willing to take a stronger antibiotic if someone was offfering it), Pen VK (per Dr. L) and now Augmentin. He is at about 95%. We were talking about it the other night and he told me that he feels much better now then when he was having a PANDAS episode; but still doesn't feel completely like himself. Dr. L told us that it could take months for him to be completely healed. I pray that we have caught this early enough and that the antibotics will be enough to heal him. My biggest fear is getting another strep infection. He ususally gets 2 a year. Our plan is to continue watching for improvements. I am going to continue having phone consults with Dr. L every 2 months or so and also have videos of our son to send her. We live in Indiana. Our first visit to Dr. L took 10 hours!!!! Of course I would drive as many miles as needed to help our son. As everyone knows, PANDAS will turn your world upside down. I've learned to take things one day at a time . . . so today we are taking Augmentin. Michelle Hi Michelle--When our d was at about 85%-90% after 3 months of full strength Amox. we tried a steroid burst and it brought her back 110% -- incredible boost for her. Her teacher even called from school to tell us there was a real turn in her abilities. You can follow our experience (or anyone's) by reading old posts (click on person's name, then member's profile option, then options box on the left-hand side, then pull down in the box to read the posts.) Best--

Welcome Beth--sorry you have had to find this forum, but it is a caring group certainly. First: Go to www.pandasnetwork.org and read, read, read-- you will have much explained there that is crucial for parents to understand. You can also search on this forum for previous topics and that may be the best way to learn about the Cunningham tests--and what they mean. You can also search and click on a person's name and then go to their "website" and read all of their posts by going to the box on the left and clicking on options, then pulling up their posts-- Re: Cunningham's tests I would recommend doing this with the father named "Buster" -- search what he has written and it will help you understand __(certainly better than anything I could add:) All the best--

I am guessing - but maybe because of the lack of response to the Prednisone? We saw (as an example) a dramatic decrease in OCD and anxiety on Pred. I really don't know if this test is definitive or not - but I usually hear about this as a part of the clinical picture. Maybe also due to the fact that Pred increased the anxiety for your son (which would be a more normal response). If a child has an increase of anxiety related behavior on Prednisone, then perhaps that starts to build a different picture. Maybe start a new thread that asks about "did your child's symptoms reduce on Prednisone" and see if anyone has a firm PANDAS diagnosis, and also a bad response to Pred instead of a positive one? Good luck with all this - it sounds like a real puzzle. I would also call NIMH & ask if you can speak to Dr. Grant - I have heard from others that he is pretty accessible. I agree--the NIH route would most likely give your child a thorough review of just about everything and Dr Grant is very familiar with PANDAS research, worked with Swedo, etc. You may have contact with Swedo as well once you were "in". If the study was suggested and you have a doctor willing to recommend to get you in it may be a real help. There would no doubt be a team available, etc. NIH is for extreme cases that need help--because of the expertise it offers--and free right?

SFMom, Can you repost the link or email it to me? I couldn't get it to work and would really like to have a copy of this article. Thanks! Jennifer Me too SF Mom--thanks-- Tmom

Welcome, and I am so sorry you have had to find this forum--BUT there are some courageous parents on this forum who have been through it-- I have to say, just reading your post my initial reaction was the same as SF Mom when she said "It's Pandas", as some of what you describe reminds me of my daughter early on. The question to me is "how much" and "how often" are you seeing what you have described? Is it intruding on his life? Read the Pandasnetwork.org website, it has a wealth of information. Do not be afraid (easier said than done I know), and feel free to private email anyone on here and people will gladly talk to you by phone as well if that would be of help-- We are parents stumbling along and literally "finding" things out -- The "steroid burst" is what helped us see a radical and sudden change in our d. That convinced us it was Pandas, and must be some type of brain inflammation issue--Dr. K in Chicago suggested that as a "test" in a way to see if it was Pandas-- spinning around once is OK, spinning obsessively is something else. All the best--

Our d had been on antibiotics (full strength) for a few months and Cam Kinase came back high (160). Steroids did affect the score though apparently as that reading was 135--

Susan, hang in there--you have sought help and continue to do so-- If it was me I would probably go to full strength antibiotics with our d for a little while, to see if it helped. (Of course she IS on full strength now:) All the best-- You have been a courageous mom thus far and will continue--you can do it. Best, T.

Mom MD-- FANTASTIC NEWS! I think you are the first of anyone on here to have posted "normal" results!!! Wow! It works! smiling and cheering for you mom md. Bronx Mom--I will be anxiously awaiting reports in the coming weeks--I am so glad things went (relatively) smoothly for you at Georgetown, YEY!!! DCMom -- May the good results continue! You courageous moms in the PICU are an inspiration, thanks. TMom

You can contact Diana Pohlman via the www.pandasnetwork website. She has a wealth of information and has been an invaluable help to us. Beth Maloney is the author of the book that came out in September Saving Sammy: The Boy Who Caught OCD. She has a website set up re: her book, a great tv clip you can view, and is also collecting names of doctors who have been helpful. (You have to see the tv clip if you have not--) It is tough as some of the doctors treating are not necessarily helpful or reputable (as I mentioned we have seen many.) You have to be your own advocate with the resources available of course, and interview on the phone. It sounds like you are wanting to get a different antibiotic--(from what you said in your post)--I would keep that goal in mind when you call and speak to the doctors -- to be sure you get someone that treats in the way you are looking for-- it is a start. I just want to encourage you that it can be done, and that you can always try negotiating prices BEFORE you see them, etc. Feel free to pm me. All the best--

If it was me, I would start by looking at the list of doctors that parents have made at the top of the ACN PANDAS thread webpage (under "helpful threads") and find the ones that are closest and call to see who they are--are they reputable, etc. You could try calling Diana Pohlman and ask her about doctors, email Beth Maloney for doctors names, track down the closest reputable doctors and call to see if they are a good "fit" and then get in the car-- I know it is a rotten deal and you may have to travel. Once you find effective treatment (even three states away) there is peace once more and a great reassurance that if it comes back you have someone to help you--find them now before a crisis hits--. I would also certainly try to get a local ped. to be "on your team" who is willing to think outside the box and be a teamplayer with a PANDAS knowledgeable doctor so you have someone local as well--I know it is easier said than done, we saw over 16 professionals along the way, they may not be anywhere near you. All the best as you continue--

We have been told, by more than one doctor, that basal ganglia inflammation can only be detected on certain MRI machines of a certain high-power capacity--typically located at research institutions. I am so sorry you are going through this and I know it must be very difficult--your note says: All along we have thought PANDAS PANDAS PANDAS due to the behavior coming in episodes and then the positive strep with each episode. This last episode was by far the worst and he had a negative gene probe? But his sisters was positive? My ped didnt really want to treat him but relenquished a mild does of antibiotic and it didnt work this time like it always has for the past 2 years. Not that I want my son to have this but I have that need for an answer to put a name on it and begin understanding it. If the scan showed no inflammation I dont know where to go????? I really think the diagnosis is a result of documenting a child's "response to treatment"--Instead of looking for scan "inflammation" as a tell tale sign (our d's MRI showed nothing -- which is what 3 doctors had indicated!) For us more pertinent questions have been the following: Does my child have a positive reaction to antibiotics (OCD/tics/rages, etc. lessened significantly) -- (It is not typical for antibiotics to do away with OCD and tics, nor is it a typical use of antibiotics to turn a child's personality around and stop rages! (unless it is illness related of course...) Does my child react positively to a steroid burst? Have you considered a phone call to Dr K (www.webpediatrics.com) to run the situation by him? I'd be curious to see what he says-- Re: antibiotics, I'd find a different doctor who understands what you are up against--then document, document, document--video tape, etc. Best to you--

Great idea to start a support group--regretfully we are east coast... ...it is a parent support group--right;) ?!?

Hi Faith-- In my d's case she had a very severe exacerbation summer of 08. Her OCD/tics went away after a steroid burst (per Dr. K's protocol + tapering) and Amoixicillan given for sinusitus which showed up on an MRI (She was so severe at the time that our ped. was willing to give her anything at the time, and my husband felt this could be helpful.) She cleared dramatically and it was a sudden and obvious change. Subsequently, that fall she caught 3 "colds" -- no strep as far as we know -- but ped. put her on Amoxicillan each time as her OCD and tics came back full force with each illness. The third time this happened the Amoxicillan did not "clear" her in 10 days, and we went to half-strength--but she got much worse. We raised the Amoxicillan up to full strength and within 4 days she was talking again and could go back to school--It was amazing...HOWEVER, at that point it took months and the addition of a steroid trial for her to come back again to where she should have been. I look at that whole year as if I lost 9 months with my d.

Judy-- I am so sorry your son has been going through this--I have to say, the following part of your post just hit me-- "I started the saving sammy dose about two weeks ago and we have seen improvement every day. OCD is still there, but he went from one day not being able to get out of the car to go to school to walking in the door the next day with no retracing. His rages are fewer and farther between with less overall intensity and duration. It is like he is on rewind with symptoms. Started to do some of his old tics from a long time ago , i.e. chewing on shirt. He has actually been joking with me, more playful. Playing pranks, etc, which he not done for years. He went outside for the first time in about 4 months last week. He rode his bike for the first time this week. We are seeing some definite improvement, but he is still retracing and doing other, new OCD things here and there." WoW! First, good for you to be such a courageous mother--Second, you are seeing some concrete improvements, "joking...more playful" YES! I am very glad for you, for your son-- I just want to encourage you that our experience of healing with full strength long-term antibiotics has not been "immediate". It takes time for the healing--and it is somewhat up and down (in our experience certainly.) I think the thing to watch for is a trend--and I say full steam ahead! Way to go-- ps--to my knowledge Buster is not a doctor assigned to our forum--but I could be wrong! maybe EAMom can tell us

Well stated DCMom. This doctor is one incredible professional--like any doctor believing in Ps and trying to HELP. This doctor is also committed to many good causes. When I think about what we have gone through, I can tell you this doctor gave me my child back.

MOST IMPORTANTLY: Best success on Monday! I pray it is very helpful-- now re: that doctor--Can you please do us all a favor and call her back and ask her for the research? let us know! Thanks--

Vickie--I will add our d's experience (very positive results) with Amoxicillan. I wonder the same though, that if we had tried something stronger would her recovery had been quicker? --but no way of going back, and the GOOD news is that from an entirely debilitated child summer of 2008: with severe, regressive, sudden OCD--no talking, eyes shut, step-stepping, holding saliva in her mouth, holding painful positions, spitting at us, throwing things, toileting "accidents", we had to carry her, presented like a large naughty 4 year old (10 at the time)--for a horrid month at the worst of it, etc.etc. From THAT presentation to today where she is a gifted, happy, funny kid again, with good friends, emotionally connected and getting all A's, again, in school--(I think the emotional connectedness was most important to me.) I credit prayer that led us to a perceptive doctor--Our d had an excellent reaction to FULL strength Amoxicillan (and two steroid bursts along the way--which seemed to snap her out of it.) We have had three severe "episodes" where she had subsequent OCD/mild tics and Amoxicillan worked well. She has been on it continually now for the past 10 months.

Hi Amy--I too am so sorry you are going through this with your son-- You have gotten pearls of knowledge from the links in the post by Kayanne--I know you will benefit from those sites. Our experience has been that the "diagnosis" of whether or not it is "Pandas" rests more with the response to treatment than with an obvious strep connection. My d had sudden onset anorexia (lasted 3 months) and then left, at age 9. Six months later she was hit with overwhelming OCD (first time with bazaare behaviors, and tics.) She gets better and stays better with antibiotics--thus far. The understanding of this (I believe from the NIH website) is that once a child is "triggered" to have an autoimmune response and the basal ganglia is attacked, than ANY illness has potential to trigger a reaction which can result in the autoimmune response/attacking the brain--IT DOES NOT HAVE TO BE STREP AFTER THE "FIRST" TIME. The few strep tests and titer blood draws (3 times) were never positive for my d--BUT the pattern of illness+OCD and tic exacerbation fits -- and her OCD (and tics) can be controlled so far with antibiotics. We believe she had untreated strep at some point. Her tics were mild but Dr Susan Perlmutter made a point that we should always tell doctors that she had OCD WITH tics present-- Last, if you "click" on a person's name and go to their "site", then click on "options" box you can pull up all of their posts (or topics they have started.) I have found this to be very helpful to read a family story over a year or two or longer--fascinating, and helpful. Best--TMom

Matismom-- To answer your questions: "My ds is on a ton of probiotics, so thankfully his stomach is handling it all-right so far. So, my question is, or rather my questions are: 1) How long does it take before one can say "THIS IS NOT WORKING" 2) Can anyone who has seen this through tell me how long it took on antibiotics? 3) Has anyone had their doctor test in vitro to find the right antibiotic?" First, some have said that probiotics might counter-react against the effects of antibiotics-- I do not know if this is proven, but some have suggested spacing the giving of probiotics a few hours away from the antibiotics, just a thought. 1.--Hard to say--In our experience last fall we had two illnesses +OCD onset. Each time once we started antibiotics (Amoxicillan) the OCD WENT AWAY once within 24 hours, second time within 48 hours. Dr. Susan Perlmutter told us Amoxicillan had anti-inflammatory effects that had shown up in their research, but was never published. Then, 4 months later, when our d got sick a third time we had to increase the Amoxicillan but there was obvious improvement within 4 days (she started talking again after 10 days of not speaking OCD.) I believe the amount and type are the variables that may need to be adjusted to see what, if any of them, will work. Dr. Nicolaides (Saving Sammy book) did this it seems. 2. Again, hard to give a "typical" example, every one of these cases is affected by length of illness, severity, etc. In our case each time it was obvious she was improving, until we just kept her on it. At the same time, it was 2 steps forward and 1 step back always along the way. Saw-tooth is an understatement--It is progressive brain healing from inflammation--like a brain on fire, it smolders for awhile (how is that for a horrible analogy--sorry.) 3. No--I wonder what that would entail.

Hey SmartyJones--What did Singer say about the video?

I think it would be important to ask a doctor about the use of probiotics--all types of stomach issues/etc. may occur otherwise... Have you tried varying the probiotics? Good Belly drinks from whole foods, Dan Active immunity drinks, or the Pearl antibiotics? and yogurts?

It seems that if the first steroid burst you did was the "5 day" was that with Dr K or according to his protocol I assume. I would guess this may have been higher than now--but you would need to check, and then compare the results. Personally, I think Dr K has the right idea with a strong 5 day--and would want to go to his recommended dosage per weight of the child at some point in the steroid burst, and if your doctor wants you to taper as well all the more better in our case. I really think the strength of the first dose compared to what you are on now is worth checking into--unless things turn around right away.

If you want to track the prescription strength a call to the pharmacy may do it--and a short chat with the pharmacist on duty to compare the prescriptions this time and last. I hope things get better soon--

I entirely agree with you -- it does seem that it takes time for the healing process across the various treatments. Did your son ever have OCD issues with this? Is he "home schooled" by a teacher provided from your school system? (Special ed services?) Is he on antibiotics now? If not it seems like that is something many are finding is important-- All the best--