Anyone Hear Of Pandas? Could It Be Dysautonomia And Pandas?

[julie_2girls]

My daughter is 15 y/o dx'd with dysautonomia Sept 2011. We thought it may be PANDAS at the beginning due to the ocd issues and hx of strep. now i find out dysautonomia can be caused by infection like strep. So wondering if we are dealing with both. Anyone with children with ocd from strep and dysautonomia. i feel like every time i turn around i need a specialist for a different problem. ugh! my daughter continues to have ocd issues. Wondering if we should add in antibiotic again. then i read that patients with mcad can get worse with antibiotics. Dr A thinks she may have mcad. she also has hashimotos and psoriasis and major allergies.

thinking of having primary care run antibody tests like: anticardolipin, ANA...what others would be helpful?

Thanks

julie

[anna]

Any chance your daughter may have had mild OCD's when younger that have shown up more now, as she has got older?! My daughter has had issues with OCD's since being a toddler, this problem becomes more intense when she is worn out or has any bug in her system. My daughter has been having bad bouts of strep throat, for 3 years now, she will be 20 very soon. We are looking into Primary immunodeficiency at the moment, has your daughter been checked for any of the PI conditions, as there is a link to higher incidents of Autoimmune conditions like Hashimotos in some PI conditions.

"Although, most individuals with CVID present first with recurrent bacterial infections, in about 20% of cases the first manifestation of the immune defect is a finding of very low platelets in the blood, or perhaps severe anemia due to destruction of red cells. The autoantibodies may also cause arthritis or endocrine disorders, such as thyroid disease" http://www.immunedisease.com/about-pi/types-of-pi/common-variable-immunodeficiency-cvid.html

[Dizzysillyak]

There could be a connection between both of your daughter's disorders and gluten intolerance.

The elimination diet and seeing an integrative doctor may help you get to the root cause of

these. This kind of doctor will start her on the elimination diet in case you want to get started. Gluten

and dairy are taken out first but slowly to avoid withdrawals.

I wasted my dd's childhood takng her to traditional doctors who never looked

for a root cause and gave her meds. She's now health conscious aka eating

healthy, no grains, dairy etc and she's feeling great .. It was her diet making her sick.

Me too to an extent. After 50 years of eating gluten, aka poison to a dq2 \ celiac, my body probably

Won't heal ...

Tc .. d

[julie_2girls]

she has been gluten free/casein free, msg and nitrate free for 1.5 years. we have a nutritional specialist kelly dorfman, wrote book what is eating your child. we see a naturopathic dr and have many things and continue like probiotics, dig enzymes, b12 injections. i have pretty much exhausted most of natural methods. it is obviously not going to be easy to heal her. there is a big connection with strep and psoriasis as well as ocd behaviors. i think i may now be getting at root cause. her naturopathic dr all along felt her problems were coming from an infection.

i am gluten free too, i feel so much better without gluten. i have hash's as well.

[julie_2girls]

anna, my daughter's ocd stuff started all of a sudden. if you read about pandas that is what typically happens. she did not have this as a young child. she was a bit more of a worrier but that is all.

[Dizzysillyak]

she has been gluten free/casein free, msg and nitrate free for 1.5 years. we have a nutritional specialist kelly dorfman, wrote book what is eating your child. we see a naturopathic dr and have many things and continue like probiotics, dig enzymes, b12 injections. i have pretty much exhausted most of natural methods. it is obviously not going to be easy to heal her. there is a big connection with strep and psoriasis as well as ocd behaviors. i think i may now be getting at root cause. her naturopathic dr all along felt her problems were coming from an infection.

i am gluten free too, i feel so much better without gluten. i have hash's as well.

Kewl .. Did your doctor order a cdsa ? I've had 3 over the last 3 years, and mine never showed a bad bacteria until recently when I tested

positive for h pylori and parasites. So far, I only understand the h pylori protocal.

I hear you on getting to the root cause. While changing my diet has helped tremendously, I'm not

sure we've found the root cause of me me/cfs/dysautonomia. I'm hoping

this treatment will help my dysautonomia but so far it hasn't. It's early so I'm still rebuilding my gut tho. I still have gluten antibodies on all my cdsas too tho.

Sounds like you're on the right path but just in case ... My integrative doctor has tested for soo many things that I'd never heard of that she's found positive

in her other me/cfs patients so I recommend finding

one of these doctors. Things like pregnenolone, dhea, as many nutrients as possible. She recommended

some tests I can't afford like the alcat too.

A good llmd might help too tho. Good luck .. D

[julie_2girls]

thank you! i know all of this is so overwhelming. i really like trying to find causes vs just treating symptoms. i am hopeful addressing strep will bring her some relief. we will see.