Kayanne

"In our Service, patients with a diagnosis of acute psychotic reaction associated with encephalitis (due to bacterial or viral infection, or even vaccine exposure) are treated with ACTH and prednisone. Due to the severity and progression of the illness (see Fig. 3) and the poor results obtained with prior neuroleptic treatments, it was decided to recommend treatment with the same protocol employed for treating postinfectious psychosis." This quote was taken from page 5 of the following paper: http://www.ncbi.nlm.nih.gov/pubmed When I read this paper last year, I was actually stunned because the cases presented happened in the 1960's and 1970's in Sao-Paulo, Brazil. If those doctors got it back then...why are so many of us having a hard time finding treatment here and now? Why is it so hard to understand that different infections can trigger these symptoms? Another thing to consider however, is the trigger of foreign substances (allergies) or our own tissue (cysts) also causing autoimmuniy that affects the brain. I think it would be really helpful to tease all of these out with DIFFERENT labels, not put it all under the label of PITANDS---of course that is a pipe dream that will not happen in my lifetime. That would cause the docs to test for a lot of causes, and tailor treatment based on infection. Just because our children have the same symptoms, doesn't mean our kids all have the same thing. In my mind, it is really post-infectious autoimmunity...for my daughter strep is her trigger.

Have her tics gotten worse since starting the zithromax? If not, then I would give the "antibiotic trial" more time -- upward to one to two months, if that is possible. My daughter takes 150mg of omnicef daily as a preventative against strep. When she was in her last exacerbation, she took 150mg of omnicef twice a day. Zithromax has anti-inflammation and immune-modulation properties, and some families speculate that is why it has helped their children. There is supposed to be "macrolide resistance" (zithromax falls into the macrolide category), so maybe your doctor was okay with a week of it, but anything longer he wants to switch to a cephalosporin antibiotic--which is what omnicef is. There have been cases of resistant strep to macrolides in Pittsburgh, PA and the Ohio Valley -- so if you are from anywhere near there, your doctor may be considering the resistance factor when he suggested the switch. I would ask your doctor why he wants to change it up, perhaps also mention the beneficial properties of zithromax too.

Very happy for your family, thanks for sharing the update!! Do you mind telling us how old your son is now? Thanks

My daughter's ped once said to me, "you either have strep or you don't...there is no such thing as a little bit of strep...just like there is no such thing as a little bit of pregnant" I can't remember the exact context of his statement, but we were discussing the accuracy of rapid-strep tests and cultures.

I agree with peglem and EAMom. I don't think you can classify PANDAS as an autism spectrum disorder. Also, if a family has a definite, clear case of PANDAS, and other children with autism...then I think they should seriously look at the possibility that their autistic child(ren) were misdiagnosed....and vice versa. Logically, doesn't it seem that if one child has a disorder, then the other children would also have a pre-disposition to the SAME disorder...what are the odds of different disorders in each child in a family? Am I making sense? Just my gut feeling...that's all. i disagree...the pandas mom i just met, who's children met with swedo..if only once...but couldn't do study because of distance..daughter..ocd no tics..son tics.if ocd she didn't mention it dh who i believe is pandas...tics...his older brother who had scarlet fever as child had a mild, short lived case of ocd in later years... that went away or are we agreeing..,,no bother.. i just feel like we are too early 20-30yrs maybe 50 the way science runs, from shutting any doors...that's all I think you misunderstand me. I do believe that PANDAS/PITANDS is a spectrum disorder…it has many symptoms from mild to moderate, and every person who has it presents differently and each exacerbation can also be different. I don’t think that PANDAS/PITANDS falls under the umbrella of autism. With all of these neuropsychiatric disorders the symptoms overlap. Both tics and OCD are symptoms of PANDAS/PITANDS (and can be caused by many other root causes)….not the disorder themselves. Certainly, I believe that family members can have different symptoms of the same disorder. The four people you listed could all have PANDAS—just different symptoms. For example, I just think that if a family has had a child who developed regressive autism at 15mos, and has accepted that diagnosis, suddenly has another child who was normally developing and at around age 6 or 7 has a clear-cut PANDAS/PITAND – how likely is it really two different disorders? Or if you were the parent, wouldn’t you be looking into a PANDAS diagnosis for your autistic child?

I agree with peglem and EAMom. I don't think you can classify PANDAS as an autism spectrum disorder. Also, if a family has a definite, clear case of PANDAS, and other children with autism...then I think they should seriously look at the possibility that their autistic child(ren) were misdiagnosed....and vice versa. Logically, doesn't it seem that if one child has a disorder, then the other children would also have a pre-disposition to the SAME disorder...what are the odds of different disorders in each child in a family? Am I making sense? Just my gut feeling...that's all.

Me too. My daughter's teacher said that by the end of Kindergarten she definitely looked and acted autistic. And when my husband and I read that study, we really believed that has to be some children being misdiagnosed as autism. We are so grateful her symptoms showed at the end of a very successful kindergarten year...and not 2-3 years earlier. When you consider Susan Swedo's original description of PANDAS with dramatic waxing and slow waning, I wonder how many autistic children who improve with the biomedical approach, may just really be improving with a receding of the strep auto-antibodies. It is the same problem with some kids with OCD who are put on SSRI's...which kick in 6-8 weeks -- about the time that Swedo observed improvement in her PANDAS children. Please don't misunderstand me, I don't think all Autism, OCD, and TS is caused by strep. We all just want the correct diagnosis so that we can pursue the proper treatment for our kids.

(((HUGS)))...and prayers ! I'm so sorry you are going through this!

Does anyone know if this should be done with all antibiotics? We just dropped my daughter down to 150mg of omnicef once a day (she took that twice a day since Feb). Prior to that is was Pen vk twice a day for about 6 mos, and 100mg daily of azith for about 3 months. Her liver has never been checked.

I'm wondering if we should pin it? I just wanted to add that the video with Dr. Pavalakis saying PANDAS probably doesn't exist is NOT on this PANDAS page! YEAH!!! -- although, it is still on DrMDK's youtube channel.

I sent him a pm thru you tube thanking him, and he sent me to his PANDAS page too...I think he just added the links to the PANDAS Network, PANDAS Resource Network,and the PANDAS Foundation -- because I didn't see them yesterday!

AWESOME!!!!

This is really great....on you tube,should we pick a specific video in the series to leave our comments on? I think I watched the whole series, and there were three things that Dr. Susan Schulman said that I really liked: “In the early onset, rapid onset child… I think you have to prove that it’s not PANDAS before you give up and call it a regular OCD.” “...by the way, it does come up in siblings, it's not rare at all to see it in siblings.” “The mildest form of PANDAS actually is irritability. The symptoms of PANDAS range from easily crying, very angry, not happy, not satisfied, irritable, fighting with his siblings, not satisfied with anything the parents give, restlessness...that is the mildest, most common symptom.” She also mentions that she has seen cases where there is no proof of infection...just exposure to strep can set it off.

#1 - yes, Dr. C has stated that lyme can also cause an elevated Cam K II score #2 - NO....SSRI's are helpful for some PANDAS children. However, this is the problem we PANDAS parents have...doctors want to treat the symptoms when we know the cause. This is post-infectious autoimmunity causing brain inflammation. So, the first line of treatment is to clear the infection and then try to help with inflammation and reset or reign in the immune system. IMHO the first line treatment is antibiotics, then steroids/IVIG/Plasmapheresis Tread very carefully with SSRI's and PANDAS...if they work, it is usually in smaller doses. If you have not added in an SSRI yet, remember that the extreme waxing and waning that some Classic PANDAS (as described by Swedo) can be more easily dismissed as traditional OCD because if your child improves in the 6-8 weeks from an episode...how will you know what was the cause of the improvement? SSRI's or the receeding of autoantibodies? I don't know enough about the long-term effects of SSRI's to comment on the rest.

I think when you consume sugar from more natural sources, your body knows when it has had enough you're more likely to get a stomach ache...it is the processed stuff that gets us in trouble. Becca loves honey too, she likes it mixed with her maple syrup on pancakes and waffles. We also buy the all natural maple syrup. Some brands of maple syrup don't even have "maple syrup" listed in the ingredients.

I'm going by memory here, I don't have the time to search for it...but I think that Beth Maloney's PANDAS Foundation is associated with an antibiotics study. Drs. Geller and Murphy are involved. Perhaps someone has more info on it.

One thing you could try right away is motrin. The reports are differing on when to give...some parents say it helps after a child has started their symptoms, and others have said it is more effective if given as a preventative measure. I only have experience with month-long tapering of steroids--twice. When my daughter was 42lbs, she started the first week at 10mg 2x/day, and then it would usually be cut in half for each of following weeks. When she was 48lbs, she started the first week at 15mg 2x/day. Usually with the 5 day burst, you don't need to taper the dosages down. I'm not sure what the dose would be for that...perhaps someone who has done it could chime in. Don't mix motrin and prednisone, they are both a little harsh on the stomach, and it can cause irritation.

I'm really glad that you are pursuing this with a doctor who is knowledgeable about PANDAS. My husband takes L-tryptophan almost every evening before bed...it has helped him a lot. And he didn't need to go back on the psych drugs when his panic attacks started up again. Try to take it about an hour away from protein, if you must eat - make it a carb. Also, your body won't do the proper conversion from L-tryptophan to serotonin and melatonin if you don't have vitamin B6 in the form of P-5-P. Most multi-vitamins only have B6 in the form of Pyridoxine Hcl. So, you usually need to take this one separately...my husband takes it in the morning with his multivitamin. He actually follows the regimen spelled out in the following e-book (it is a free download): http://www.thewayup.com/ Please note that this author recommends taking L-Tyrosine too, and some people with TS don't do well with it -- and some other amino acids -- the folks on the TS board know a lot more about it than I do...my husband feels the whole program has been beneficial to him. There are other serotonin supplements. 5HTP is an intermediate substance converted from L-tryptophan, then it gets converted to serotonin. Read up on both, but only pick one...I don't think you can mix them. Definitely do not take a serotonin supplement at the same time as an SSRI

I left a comment thanking him for the updated information, and I listed these forums as a resource. He sent me a pm: "DrSchulman has treated over 200 cases of sudden OCD as PANDAS I will have a new video with her on PANDAS soon DrMDK" Is anyone familiar with Dr.Schulman?

He is moving in the right direction.

It could be vitiligo...My husband has it...the last two years it has gotten worse mostly on his hands. It looks much worse in the summer because he tans pretty dark, and those spots are very white. You cannot notice it in the winter. I also think my husband has a really mild TS or PANDAS...so maybe it is related. I've been googling it a lot lately. There isn't much info on it. It is considered to be autoimmune--and benign. We told Dr. L about my husband's case last summer, and she just said these kids are genetically vulnerable to autoimmune conditions. Other conditions that seem to keep coming up in my searches are celiac disease and pernicious anemia...as possible underlying causes of this condition...but I think most of time it is considered to be okay.

If he has only been on the azith for 4 days, I would give it a little more time. For us, the improvements from anitbiotics were noticable more towards the end of the 10 day course...for us the best improvement on antibiotics alone was at the end of 10 days of clindamycin -- but when the antibiotics were stopped...within 2 days she was much worse. I've heard that from 2 other parents too. It is a good idea to get your whole family tested/and or cultured for strep -- just try to consider where there could be exposure because that will slow or hinder your son's improvement.

sometimes, if I know I have a large post -- which seems to be all the time -- I type and edit it in Word, and then just clip and paste it into the posting box

I just realized another reason why I can justify NOT exploring Lyme in my daughter's case...our asymptomatic Cam K score was low--112 it overlapped with normal. PMom, didn't one of your sons have the same score? I don't begrude anyone posting about Lyme, sometimes, I just wish the TONE was less severe. It is the same tone that was taken a while back about IVIG. Sadly, I think a lot of the hard feelings from back then have been dredged up again--from both sides. We are all parents trying to do the best for our children, and any information is appreciated. We PANDAS/PITANDS parents have to appreciate that not ALL cases of OCD and TS are caused by infection, and the tone of the recent Lyme posts have been very definitive (borderline insistent) that Lyme is the underlying cause of it all. IT IS VERY POSSIBLE TO HAVE THE SAME SYMPTOMS WITH DIFFERENT CAUSES -- just google the term "chorea" and see how many different kinds there are. Many of the people who come to this forum are scared, worried, trying to find common threads about their children...trying to glean if they will get better, and taking a hard line approach about tests and treatments just adds to their anxiety. It is OKAY to tell people to get an Igenix test for lyme, it is OKAY to tell them to try to get everybody in the family cultured, it is OKAY to tell them about the things we have learned that have helped our own children. However, we need to also take a step back and respect when a parent states that they believe they have explored a certain possible trigger, or they don't want to try a certain treatment.

Fixit, when we spoke last night, you said your son was sucking on his shirt a lot...and I didn't think to tell you that I have read that that is a reaction to red dyes until I read this thread today...but I can't remember where I read it...I think it was on the ADHD forum here, and I don't have time to look for it. Anyone else care to post a link or share what they know about dyes? Also, I remember the z packs that I took last year and they were white pills. I know I have read that other parents have requested the dye free version of azith and gotten it...I would try another pharmacy. I gave up on all the big chain pharmacies. There is one near me that is locally owned, and been around since the 1960's, and I go there for everything.