Saying Yeah! PANDAS OCD. Help!

[P_Mom]

Hi all.

I just wanted to add what I have learned about the whole strep titer association and PANDAS/PITANDS. I have spoken to many doctors and specialists, including ones at the NIMH and also Dr. Murphy. As of today, (and I know they are learning more and more about PANDAS/PITANDS every day), strep titers DO NOT have to elevated for a PANDAS diagnosis. I have been told that it "doesn't work that way." (regarding titers) Also, other bacterias, etc., can cause the sudden onset of symptoms, mycoplasma has been a big one. Patients have had a sudden explosion of symptoms with negative titers, and when treated with autoimmune regulatory therapies have shown DRAMATIC improvement, and even remissions. The main criteria for suspicion of PANDAS/PITANDS is (and I quote) the "sudden, dramatic onset, or dramatic exacerbation of symptoms." Sometimes no illness can be illicited for the trigger for this because MANY kids will show no symptoms, therefore the relation to illness/infection triggered ocd/tics goes unrecognized. Also, negative strep titers do not mean they do not have elevated titers for other illness/viruses. (again, mycoplasma is a good one to check.) Basically it comes down to this... if your child's behavior, wheter it be ocd, tics, unusual behaviors, etc., changes almost overnight and he or she goes from A to Z, I would strongly suggest the PANDAS/PITANDS route be thoroughly checked out. How can a child change that dramatically without any reason? (infectious agent)

 

Kelly

[Chemar]

well

 

then they have changed their tune is all I can say

 

I initially took my son to Shand's BECAUSE he had a sudden and explosive onset of symptoms, but they ruled out PANDAS based purely on a series of blood tests

 

we were told his sudden onset was likely the TS gene "switching on"

 

we know that there is a family TS link

[bmom]

It does sort of seem that my son would seem to fall in that category, yet my husband also has some minor tics so I am not sure. My son has had several strep infections so I just cant figure it out. Kelly- when you are referring to autoimmune therapies- is that antibiotics and is there anything else you are referring to?

[Chemar]

interesting about mycoplasma Kelly, as there was a recent article in our local paper about a theory that Crohn's is triggered by mycoplasma bacteria.

 

My son has Crohn's as well as the Tourette dx, and, altho he did have eye and other tics from a very young age, he had an almost overnight onset of severe tics, OCD. Depression etc just after his 10th birthday. Altho we only got a definitive Crohn's dx about 2 yrs ago when he was 16, yet he has always had GIT issues, initially believed to be primarily candida

[P_Mom]

bmom....antibiotics (atleast some of them), can have an immune modulating effect from what I understand, but, there are several other immune modulating therapies.. PEX, IVIG, corticosteriods, just to name a few.

 

Chemar... your son's case is interesting to me because of the sudden, severe explosion of symptoms. I know this is really hind-sight as your son has been officially diagnosed with inherited TS, and, really, what only matters is that he is doing well today, but, I can't help but wonder about a few things. Shouldn't the TS gene have already been "turned on" since he had tics since a young age? I don't know, it just seems to me that SOMETHING had to happen to make the symptoms come on so severly and suddenly, like some kind of infection. Did you ever try antibiotics to see what would happen? You know what else kind of struck me.. on one of your posts you mentioned your older son had strep in the late 90's, and then your younger son was finally diagnosed with TS in 2000, could there possibly be a connection? Many kids show absolutely no symptoms with illnesses. Forgive me for asking all these things, that is just how God made me, with a very unrelenting mind. (hence the genteic connection for my kids! ) Anyway, there is a genetic connection with PANDAS kids as well as TS kids, somehow PANDAS kids are predisposed for this autoimmune reaction. Okay, two more questions... how long after the sudden exacerbation of symptoms did your sons blood get tested for PANDAS? How were his symptoms at the time of that visit? Did you ever get titers drawn for any other bacterias, viruses? (okay, it was 3 questions. ) WEll, that is it, I do think I really should take a break from this computer, sometimes I think it makes me think WAY too much, which I already think too much already .

Take Care!

Kelly

[Chemar]

Kelly, what I was told by the developmental pediatrician at the time of my son's TS dx was that, even tho the early childhood tics existed before, yet around age 10 is when hormonal changes, specifically testosterone, kicks in with boys and that in turn can cause the activation of the TS gene(s)

 

My son was on zithromax in July last year related to the Crohn's fistula. Altho it helped with his gut/fistula for a short period and then no more, it did NOT reduce tics, OCD etc beyond what the supps already had done...ie I noticed no improvement in his overall TS symptoms when he was on the zithromax.

 

re exposure when my older son had strep....I would have imagined that as my son was a patient at Shands for a year, initially under dr Murphy and then her associate dr Vincent, that if there was any indication of his case being PANDAS related, surely the vast array of tests they performed would have shown that? we were emphatically told he was not a PANDAS patient, based on the blood tests they ran.

 

I am however beginning my own research now into the mycoplasma situation, as if that does in fact cause Crohn's, and if it is also considered a possible link in sudden onset of tics/OCD.......hmmmmmmmmmmmm

 

right now, both his crohn's as well as hos TS symptoms are in wane mode...the crohn's has been so for almost 8 months now...and he is taking no antibiotics, and hasnt taken any monolaurin for quite some time either...ie taking nothing beside his supplements for TS and crohn's

[P_Mom]

See, told ya I think too much. Anyway, skipping to the mycoplasma, I have read at least one report of a teenage girl waking up one day basically with severe ocd etc. Her strep titers were normal, but when Mycoplasma titer was run, it was significantly elevated. She responded dramatically and immediately to IVIG and remained in remission for as long as she was followed up on. Keep us posted on your research into the whole Mycoplasma thing. God Bless!

Kelly

[kkver]

I hope they find more about this because as of now it is very complicated topic. Theory of titers is getting changed a little bit , I heard that too from a Doc in USC but there is still debate how onset of step produces excess of dopamine resulting in tics /ocd.

[Guest alyssa]

My daughter was diagnosed with PANDAS a year and half ago. She has had the seperation anxiety, decreased handwriting and TS . I did not think she had OCD with it but realized she has along had mild OCD as well. This latest onset of symptoms has her saying "yeah" about a hundreds times a day but I have to say "yeah" after she says it or she goes to pieces. She has also been checking things. Her phone and electronic game. She has to sleep with them and goes to pieces if she can't find that. I realize that is pretty common with OCD but the Repeating back what she says has our family really stressed as the siblings are really bothered by it. We are going to Singapore in a couple of weeks to get some allergy testing done and see a Neurologist. I had her on 250 mg of zithromax every 5 days. Now with this outbreak I thought maybe she got strept that was resistant to the Zithromax. I have had her on Amoxacillin for a few days and she is not getting better I think I'll switch her back to Zithromax? We are in Indonesia and self medicating. No prescriptions needed.

 

I hope to get help in Singapore.

 

Anybody heard of the repeating back as a symptom of OCD?

 

 

Yes these treatments work VERY well. I am living proof of this. I was diagnosed with PANDAS in 4th grade. I am now 20 years old and a junior in college. I had this treatment along with IVIG, and I took Zythomax in order to protect myself from strep. I've been doing fine since these treatments. Before this, I was on things such as Augmentin, Prozac ALOT of other drugs which doctors just experimented with. None of them worked and the majoriry of them ( pardon my language) but they put me through total ######. Feel free to send me a message if you'd like more details

[P_Mom]

Alyssa,

Glad you are on board...you can provide us all with much needed answers!

 

Can you be more specific as to what treatments helped you the most? How often did you receive these treatments?

Do you need to take anything today to control PANDAS? (antibiotic, etc.)

Do you have any remaining symptoms?

 

 

What do docs expect to happen if you get strep today? Would you have an increase or is the PANDAS gone???

 

Thanks so much!! So glad you are well and on board!!!

 

Kelly

[michele]

Alyysa. I am glad to hear from you. It has been a while since you last posted. Did you need an antidepressant drug along with the antibiotic Azith to treat your PANDAS? Do you think the antidepressants like Zoloft helped with the OCD. Was your OCD repetitive thoughts or more of the handwashing, hoarding, contamination kind? At what point do you think a child would need IVIG? How bad was your condition when you began the treatments? If the symptoms can be controlled with antibiotic therapy and psych meds and cognitive behavior therapy so you think that is enough? Or do you think it is better to just go for the IVIG and try to treat the PANDAS issue? Did you ever take Omnicef/cefdinir? My son is on Omnicef/cefdinir and Abilify for the emotional behaviors and OCD. Are you still on antibiotics daily? What other supplements do you take. Sorry for all the questions but you are the expert here. I hope you are doing well. Thanks.

 

Michele

My daughter was diagnosed with PANDAS a year and half ago. She has had the seperation anxiety, decreased handwriting and TS . I did not think she had OCD with it but realized she has along had mild OCD as well. This latest onset of symptoms has her saying "yeah" about a hundreds times a day but I have to say "yeah" after she says it or she goes to pieces. She has also been checking things. Her phone and electronic game. She has to sleep with them and goes to pieces if she can't find that. I realize that is pretty common with OCD but the Repeating back what she says has our family really stressed as the siblings are really bothered by it. We are going to Singapore in a couple of weeks to get some allergy testing done and see a Neurologist. I had her on 250 mg of zithromax every 5 days. Now with this outbreak I thought maybe she got strept that was resistant to the Zithromax. I have had her on Amoxacillin for a few days and she is not getting better I think I'll switch her back to Zithromax? We are in Indonesia and self medicating. No prescriptions needed.

 

I hope to get help in Singapore.

 

Anybody heard of the repeating back as a symptom of OCD?

 

 

Yes these treatments work VERY well. I am living proof of this. I was diagnosed with PANDAS in 4th grade. I am now 20 years old and a junior in college. I had this treatment along with IVIG, and I took Zythomax in order to protect myself from strep. I've been doing fine since these treatments. Before this, I was on things such as Augmentin, Prozac ALOT of other drugs which doctors just experimented with. None of them worked and the majoriry of them ( pardon my language) but they put me through total ######. Feel free to send me a message if you'd like more details

[lss]

Dedee,

I am thinking of seeing Dr. Murphy, but others on this site have seen Dr. K in Chicago for IVIG. Your child sounds very much like mine. We had our son's tonsils removed in August hoping this would clear up his tics. They went away for a few weeks, and are now back. He too had 3 strep infections within a 7 month period before tonsils were removed, by recommendations by the neurologist. Did Dr. Murphy mention IVIG at all. Would love to hear more info on Dr. Murphy. I know she was very involved with Swedo and Pandas. It would be easier for me to fly to St. Pete from Dallas than to Chicago, but I will go wherever I need to. I also noticed that your son was NOT prescribed Tennex by Dr. Murphy and only antibiotics.

I appreciate any help. Again, thanks to all

 

Linda

I would like to add my opinion on the theory that antibiotics cause the antibody titers to stay high therefore the neuropsychiatric symptoms to remain evident. My son has had PANDAS for seven years. He has only been on antibiotics for one year. I can promise you that his neuropsychiatric symptoms during the years previous to his antibiotic use were extremely unstable and unpredictable. There was always an association to his strept infections but in addition we would also see flare ups that we could not relate to any specific incidence. There was absolutely nothing we could do to stabilize his moods, his insecurities, his fears or his difficulities in school.

 

About 18 months ago when he developed tics after a series of strept infections we had his tonsils removed and finally got a visit from Dr. Murphy. We have followed only her advice in regards to his treatment for PANDAS realizing that she is the expert on this illness. She did recommend the low dose daily antibiotic treatment for our situation. This has been the only thing that has stabilized our childs tics and his entire life in general. His moods are entirely different. He has been a straight A student all year and a total joy. We still have a few minor tics and issues but we are dealing with it as it comes and with the methods that she gave us. I try not to confuse myself with other outside influence, if I believe this is the right thing for my child. Each child is different and each situation is different. However, when I think of how he was prior to antibiotics and after, there is no doubt that the antibiotics have not caused a build up of antibodies of any kind to worsen any illness. In PANDAS patients, antibodies will often stay elevated for long periods of time regardless of antibiotic therapy.

 

I know that in our desperation as parents to help our children we will often search for answers and be willing to try many things in hopes that it will ease their suffering. I just hope that that we remember that all treatments take time to work and flare ups are an inevitable part of this illness. It is JMHO that switching from one treatment protocol to another to quickly, before really giving it time to work, could cause more harm than good.

 

I do not mean to stir contraversy. I am only speaking in generalities about things that have been swirling in my mind lately in hopes that it may be of help to someone. Everyone here is so nice and helpful and I hope that we can all get the comfort we are searching for to help our children. This is what is truly important. Thank you all so much for your support during this journey.

 

Dedee

[EAMom]

Alyssa,

 

How old were you when you got IVIG?

 

Did hitting puberty help your PANDAS at all? (I've heard it may.)

 

Have you ever been on birth control pills and which kind (progesterone?) and did they have any beneficial or harmful effect on your symptoms? (I heard pregnancy helps some auto-immune symptoms and since birth control pills "trick" your body into thinking it's a little bit pregnant, I thought they might help symptoms.)

 

Sorry for all the questions...I'm just trying to figure out what will happen to dd (currently 8 years old) when she hits puberty and you're one of the few availble who might have some answers! She's been on Azithromycin since June and it's made a huge difference. We're playing it by ear, seeing how she does this year, with strep exposure in school, etc. IVIG is a consideration if she relapses.

 

EAmom

[Dedee]

Linda,

 

I'll try to answer your questions about Dr. Murphy. She did not recommend Tennex or any other meds for him because as his behavior spread sheet showed, when he was on antibiotics the tics were almost completely gone (only a mother would recognize what was left). At that time he was still on celexa for his ocd which was working well and we had not attempted to wean it off at that point. When she saw and heard how well he did with his remission of symptoms while on antibiotics she just felt that was the way to go. The general consesus was that we would continue the amoxicillin, since it is not very strong and that way if it stopped working at some point we would have something stronger to move up to. She was very open to considering something stronger if needed. I like the idea of using something that isn't as strong. I think we are just very fortunate, I know there are many PANDAS children who need some of the stronger antibiotics to eliminate their symptoms. I did not really speak to her in terms of more aggressive therapy (such as IVIG) because that just wasn't my goal at the time. We talked of antibiotic therapy and other supplements that should be on his treatment plan (fish oil, probiotics, multivitamin). We also discussed the future in terms of when we should stop antibiotics or if he had a flare up, those kinds of things. She was extremely helpful to my family. I just don't have any idea on how she weighs in on the IVIG and other more aggressive therapy. I wish I could be more help. All I can tell you is that my son has continued to do well on antibiotics and we have since weaned him off his celexa. I am hopeful (probably dreaming), that we may be able to stop his antibiotics for a while next summer and see what happens. If nothing else, I'm sure it would be good for his body to take a break for a time. Good luck in your decision. Keep us updated.

 

Dedee