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Help! Confused Mom in Florida - OCD, TIC's, PANS? so many ?


KIWIRN

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Hi, DD6 has been having various symptoms with a sudden onset last summer, starting with not feeling that she was 'dry' after wiping in the bathroom, (we were travelling) she also developed a persistant cough and was highly stressed/emotional. A walkin Dr prescribed Zithro for cough, urine was neg-(thought maybe urethritis). No response to AB. This was when I first researched and considered PANS due to the sudden onset and change in her emotional self. Ped tested ASO it was negative

She started kindergarten and became convinced that she was "dripping in her underwear, however she continued to cough so it seemed feasible that it had happened occasionally. She had 2 "accidents' at school when she had never had any accidents since potty training because she thought if she didn't go at all she wouldn't "drip". This set up a fear of public embarrassment and consequently " OCD like behavior" where we are now a year later. She coughed persistently for 3 months on the first round then got another bout of it in the spring for 3 months. We saw a pulmonologist had rast testing done and a mycoplasma titer done. Negative results except for high on dust mites She had various AB treatments, and asthma drugs for coughing with no results. (Has since been cleared of having 'asthma" after a year of steroid use!)On the second round an ENT suggested her cough could have morphed into a psychogenic cough.

The Bathroom "behavior" requires her to wipe so much (like a roll of toilet paper a day) and do it in a specific order, quick blast of water on her hands and run out of bathroom quickly, if anything interrupts this she freaks out and has to start again. Her symptoms are worse in the afternoons. She may have to go into bathroom every 10 minutes This was peaking over the summer.

So now we are two weeks into first grade and she knows that it is socially unacceptable to do what she has been doing so she says" she is doing ok at school'. We continue to have issues at home or when she is with me at afterschool activities. She has now started a mouth wiping ?tic? again worse in the afternoons where she is wiping the corner of her mouth every minute or so. She says it feels slimy but it isn't. The last few days has seen the return of an old behavior from last year where she is grabbing and yanking on her underwear frequently like every minute or so, pulling one way then the next.

 

Several other factors are for consideration: She was hospitalized for osteomyelitis in her ankle in Sept 2013 it was a combination infection of Staph Aureus and Salmonella. She was on heavy antibiotics for 6 weeks and the ID doctors said that Salmonella can reside in the body for up to a year hanging out in the lymph system. She had no obvious gastric issues but in her kindergarten year in addition to the persistant coughing it saw her catching a virus about every 2-3 weeks. She most definitely suffered PTSD from the hospitalization and from the needles every day (as did I) but as time has passed she has gotten better with that all. Another ASO titer done by our new ped, was also negative. Her bathroom symptoms/behavior is definitely way worse when she is catching or fighting a virus in addition to when she is 'stressed' either physically or even if she is happy/overexcited for some reason. She also has this weird thing with one finger on her right hand - were it peels down to raw and starts splitting when she has any kind of immune challenge/virus.The heartbreaking part of it all is my once confident little girl, is having social problems - having trouble connecting with her friends being ultra sensitive and really struggling in that aspect of her life. She is regressed in that she is very "oral' like she was as a toddler putting everything in her mouth, is having wicked tantrums and trouble getting to sleep. I guess I have a tendency to be intermittently freaked out (if her behavior is off the charts) or rationalising them as being based on life situations- starting school, lack of sleep, she's getting sick etc etc. I just want to protect her from medical intervention as much as possible because of the trauma from her osteomyelitis but I'm so confused/distraught about if she does have something treatable and is suffering needlessly.

My husband agrees when he read the symptoms of PAN s/PANDAS that it describes her to a T and of course says take her to a DR- the best there is even if we have to fly. So, simple right?

This is where I am so confused and the questions and doubts circulate on a regular basis as I try to figure out what to do, so sorry for the long post but I'm just hoping for some guidance.

 

To those who have been living/dealing with this all, I wonder if you can help me??

1. Does this sound similar to any of you out there?

2. These symptoms feel so minor compared to some of the tics I have read about, but they are still affecting life significantly. If you have true OCD can you just be in control at school and replace the obsessive behavior with another? So is mouth wiping an OCD or a tic?

3. I called Dr Tanya Murphy's office and they said we need to do an intake interview to determine if she would see us. Does anyone have experience with her, can she order the full immunological workup to rule out other factors even though her background is Psych.

4. Does anybody have other recommendations for a Dr since ASO titers have been negative and it maybe from an seemingly obscure infection?

5. I have wondered if she has a co-morbid systemic Candida due to her heavy AB use but don't know how/where to test for that (needless to say we are on probiotics, dietary mods, vitamin supps) does anyone have info on this?

6. Does anyone have a PANS diagnosis after salmonella infection?

7. Is it possible that symptoms start occurring almost a year after a major infection? I'm thinking the constant immunological insults with viruses may have played a role, but also wonder if Salmonella remained in her lymph system whether it was the causative pathogen.

 

I guess I'm looking for validation that these symptoms do seem PANS like and not just psychological, and want to know peoples opinions on whether to pursue in-state (Florida) assessment/treatment?

Thanks in advance to anyone who can shed some light :) I just feel so sad, confused and isolated by this all.

 

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I'm sorry I only had time to skim your post. YES, some of this is what we saw with our dd. The urinary frequency and occasional incontinence was HORRIBLE. Absolutely changed our lives for years. We had to buy a port-a-pot so we could travel even short distances. Our dd is 23 now, and no one had heard of PANDAS then, so she went from urologist to kidney specialist - so many docs - and they had no clue, as nothing seemed physically wrong. So, as docs often do, they claimed it was from stress, gave her psych meds, and told us she might grow out of it. She has since (years later, and other issues cropping up) been diagnosed by Dr. K in Chicago and Dr. L at Georgetown with PANDAS - she actually has had all the symptoms of PANS except one.

 

Her brother has not seen a doc (as we spend all our time and energy with dd's issues), but both of those docs said he probably has it too. Our kids are very different, but even my son gets the wiping continuously and using a roll of toilet paper when he gets stressed. He also does this throat clearing tic when he brushed his teeth, and has some OCD behaviors.

 

I urge you to go to a PANDAS knowledgeable doc and not let this continue any longer than it has to. Our dd has lost over half her life to this disorder, and is still struggling with an eating disorder, which has been devastating. She did have a lot of strep when she was young, but it turns out she has Bartonella also. Honestly, the worst she ever was was after a mono like infection, so I don't think it is just ONE trigger - I think it's just the immune system all screwed up, maybe due to the gut problems after all those abx as a kid. We do probiotics, but her yeast overgrowth and gut issues have never gotten better. She rarely gets physically ill from sickness, so we don't realize what's going on unless there is an uptick in mental issues.

 

I actually don't have time to finish! Ugh! I'll try and write later today.

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Hi

Others may have additional physicians to suggest but there is a doctor in Florida who was at the forefront of research into PANDAS etc and also specializes in pediatric tic disorders, OCD etc

 

Dr Tanya K Murphy

800 6th St S, St Petersburg, FL 33701
bio

http://health.usf.edu/medicine/pediatrics/profile.html?person_id=62247

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As you've probably found from your reading/research, PANDAS/PANs is unfortunately not limited to strep or myco, etc. Given as it is the result of a dysfunctional immune system, it seems entirely possible/probable to me that the staph/salmonella experience could have set it off in your DD.

 

I would try to get in to see Dr. Murphy ASAP, as Chemar has suggested. She knows this animal quite well, and her staff at USF is well-versed in the sort of OCD behaviors and interventions that will help your DD function while her brain and body heal.

 

All the best to you.

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