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lab results are in....more help please!


906bell

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Hi everyone,

I have posted for help these past few weeks and appreciate everyone on this forum who has responded with such excellent advice and supportive words. My son had sudden onset of OCD and tics right before he turned 3yo. He was recently dx with Tourette's, OCD and anxiety. The neurologist also said he would continue to see him over the next few years to rule out Aspergers. My son changed overnight and struggles with his new behaviors. At my persistence his new pediatrician agreed to look at the possibility of pandas. He consulted the neuro. and they ordered the ASO and antidnase b tests. The results came back in the normal range at -20 and -70. I have looked into DAN doctors but the only ones I have found near us do not accept insurance. Same goes for the more holistic doctors in my area. I did take him to see an upper cervical chiropractor. It either helped or was coincidence but his sleep issues overall improved about that time. There is not a lyme lit. md in our city and he has never had a tic bite. Any other suggestions or professionals anyone could recommend? I keep thinking there must be SOMETHING or SOMEONE who could help put together some piece of this puzzle. He seems to be so uncomfortable in his own skin...literally and physically. We have to say 'okay' with the correct inflection to everything he says. He complains of his skin feeling like there is "hair on his body". My gut just keeps telling me his OCD and Tourettes is secondary to something else going on and I am at a loss as to how to help him. I am willing to deal with the TS and OCD but I feel like there is more I can do. FYI, I have cut out most dyes, preservatives, etc. in his diet. Any suggestions? Is there a next step past continuing with a psychologist and neurologist? A couple of other things to throw out there is that he had a rare parasite dx at 3yo. MD prescribed medication but no further f/u or workup was done after that. ALSO, he is basically selectively mute but JUST at school. He has wonderful expressive and receptive language skills but is social 1:1 and with familiar family friends but is scared to death to socialize with peers at school. It breaks my heart. One last thing, I am taking him to an allergist tomorrow who has an interest in environmental medicine and I THINK he will help with the nutrition/supplement side.

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My DS's(age 7) ASO and antiDNAse B tests came back very normal, as well. His main presenting behaviors were severe separation anxiety, anxiety, irritibility to the point of rage and OCD. He developed tics one year after his first presentation of what we now know is PANDAS. He was not given blood tests ih the beginning. He was tested just before his PANDAS diagnosis. I took him to the pediatrician, a neurologist, started seeing therapist, went to a psychiatrist and put him on meds. After one year and a neuropsychologist telling me my son had Aspergers and bipolar, I called Dr Trifiletti for a phone consult. We started DS on biaxin and he started showing improvement w/in a week. He's been on antibiotics continuously since Oct 2010. He's about 90-95% improved. I recommend you call one the PANDAS experts for a consultation or appointment.

 

His Cunningham test came back in the low range of PANDAS, given after we started antibiotic treatment. His Anti D1 was high. D2 was at the top end of normal.

Edited by nicklemama
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Keep in mind that low levels of the strep titers do NOT rule out PANDAS. My daughter has low titers, even with being unable to clear a strep infection for literally months due to also having CVID (Common Variable Immune Deficiency).

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906bell -

 

Your story sounds very similar to ours. Our son had onset at about 20 months, and dx at 26 months. He presented with OCD/ODD and ADHD - the tics came much later. But the way you describe him socially was my son to a T. We too were also told of the possibility of Aspbergers - but after 13 months of treatment (abx only so far) we aren't very worried about that anymore - most of his Aspberger-like traits have receeded.

 

Our pediatrician did a trial run of 30 days abx to rule out PANDAS before he reffered us to a pediatric psych. The results were dramatic. We are not fully healthy - we're about 75% back to normal off antibiotics - and ironically just got swabed positive today with no physical symptoms, just some odd behavior we saw.

 

My son's blood work has NEVER come back with anything other than normal results - as a matter of fact, we were told at one point that his immune markers for skin infections (I don't remember which marker it was right now-sorry) was the best they had ever seen. The irony there, his PANDAS was triggered by impetigo, and he's had other bouts with it since.

 

The way things were explained to my by our pediatrician, and again by Dr Murphy (our PANDAS specialist in Florida) was that at this young age, the immune system is still developing and is in such flux that the titers and other immune markers may not always be reliable.

 

Try to get in touch with some of the specialists if you can. I'm not sure where in the country you're located, but I would also start interviewing other pediatricians. See if you can find one who is open to PANDAS. Ours is, and he has proven to be a huge resource.

 

Good luck!

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Hi everyone,

I have posted for help these past few weeks and appreciate everyone on this forum who has responded with such excellent advice and supportive words. My son had sudden onset of OCD and tics right before he turned 3yo. He was recently dx with Tourette's, OCD and anxiety. The neurologist also said he would continue to see him over the next few years to rule out Aspergers. My son changed overnight and struggles with his new behaviors. At my persistence his new pediatrician agreed to look at the possibility of pandas. He consulted the neuro. and they ordered the ASO and antidnase b tests. The results came back in the normal range at -20 and -70. I have looked into DAN doctors but the only ones I have found near us do not accept insurance. Same goes for the more holistic doctors in my area. I did take him to see an upper cervical chiropractor. It either helped or was coincidence but his sleep issues overall improved about that time. There is not a lyme lit. md in our city and he has never had a tic bite. Any other suggestions or professionals anyone could recommend? I keep thinking there must be SOMETHING or SOMEONE who could help put together some piece of this puzzle. He seems to be so uncomfortable in his own skin...literally and physically. We have to say 'okay' with the correct inflection to everything he says. He complains of his skin feeling like there is "hair on his body". My gut just keeps telling me his OCD and Tourettes is secondary to something else going on and I am at a loss as to how to help him. I am willing to deal with the TS and OCD but I feel like there is more I can do. FYI, I have cut out most dyes, preservatives, etc. in his diet. Any suggestions? Is there a next step past continuing with a psychologist and neurologist? A couple of other things to throw out there is that he had a rare parasite dx at 3yo. MD prescribed medication but no further f/u or workup was done after that. ALSO, he is basically selectively mute but JUST at school. He has wonderful expressive and receptive language skills but is social 1:1 and with familiar family friends but is scared to death to socialize with peers at school. It breaks my heart. One last thing, I am taking him to an allergist tomorrow who has an interest in environmental medicine and I THINK he will help with the nutrition/supplement side.

Hi there,

My son has the same ocd "ok", "ok" aside from strep titers, you can test for mycoplasma pnemonia igg and igm, ebv I'm sure others will chime in on other tests, ige shows allergy, my son has that too. Good luck! tami

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Phasmid - The rare parasite was dientamoeba fragilis. He was treated for it and around that time was doing great.

 

FYI/update - we saw an environmental health md/allergist today. He did a blood work-up and is going to work with us on the nutrition aspect. First cutting out yeast. He did say if no hx of strep then pandas was not a consideration. He also didn't feel like the past parasite was an issue. hmmm. I hope we get somewhere with him...he is out of network for insurance...so still costing $$$. My husband feels like I am grasping at straws and that I should stick with the neurologist. I think this is going to be a long road...

 

Also, I keep forgetting to google mycoplasma. What is mycoplasma?

 

Do the pandas specialists do phone consultations?

 

Thank you everyone for help and insight.

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