Where to go next?

[vermontmoms]

Ok, we are at a loss....

My son had his MRI, they thought they saw a tumor on his brain near the right ear ( could describe the sudden onset of severe hearing loss in that ear). The sent his MRI to ped oncology and a radiologist that specialize in brain tumors; they consulted and said our son does not have a tumor but he does have a sinus that has not developed properly and looms tumor like but to not worry.

 

Our (new) neuro said our son has tourettes/ocd not anything else but cannot explain the hearing loss. She also noticed all the tiny whit bumps on my sons skin and said tbat is caused from an overproduction and cannot be treated. She told us about medications we can use to control tics. But in the meantime referred us for an EEG to rule out seizures.

 

To me.....this is total BS! I can't believe my kid has TS when his symptoms started after his first strep infection; around that same time we were camping and he fell back on a tile floor and hit his head (enter inflammation) which I feel helped the strep cross the BBB. Hence the tics that started a week later and the rapid in rise of ocd ( lining up every stuffed animal, x # of drinks a night, extreme sensitivity to temperature, rage behaviors, etc...)

 

I know he also has myco, staph, and repeated strep which I feel have caused this decline in my sons health. We have seen Dr L and an LLMD and just feel we are not making any forward progress. I truly feel my son has an immune system problem that is attacking his nervous system. I think he may have a staph infection which is causing skin issues. I feel that allergies are also playing a role.

 

So who do we see next? An allergist, an immunologist, a dermatologist, another PANDAS doc? Who?????

 

I just feel we are waisting such precious time and matters are only getting worse whike we spin our wheels.

 

Thanks for your help!

Jen

[colleendonny]

I do not have much information for you but if you are looking for an allergist/ immunoligist who is a PANDAS doctor, you could call Dr.B, who is all 3.

I hope you do get some answers soon. Personally I have a tough time understanding TS. I believe there is an underlying reason for most medical issues, TS being one of them. Especially when you can pinpoint when symptoms started.

Hang in there.

[LaurenK]

I do not have much information for you but if you are looking for an allergist/ immunoligist who is a PANDAS doctor, you could call Dr.B, who is all 3.

I hope you do get some answers soon. Personally I have a tough time understanding TS. I believe there is an underlying reason for most medical issues, TS being one of them. Especially when you can pinpoint when symptoms started.

Hang in there.

 

 

Does your son have any active infections currently?

[vermontmoms]

His ASO titers were not elevated last week when we did a blood draw but there were 3 dx strep cases in his class in the last 3 weeks.

[smartyjones]

So who do we see next? An allergist, an immunologist, a dermatologist, another PANDAS doc? Who?????

 

 

vermont -- are you in denver? have you considered an integrative dr? i believe elizabeth who used to post often is in that area with an integrative dr. just maybe a different route that may be helpful. good luck and i'm very happy to hear no tumor!!

there is an interesting book on audiology issues called 'when the brain can't hear'. the author is an audiologist who didn't at first realize she herself had trouble after a car accident. may have some helpful info.