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I am not sure which direction to go with my daughter. Has anyone had a very positive result with themselves or their child doing things naturally. (With vitamins, diet etc.) Feeling family pressure to treat her homeopathically but I am an RN and pull towards the medical side of things.

Knowing the brief version of where my daughter is at might help with the advice. She had strep & scarlet fever in April, seperation anxiety started right away then symp. Were masked as she went on abx in May for a UTI. Then at the end of June early July things got out of control, OCD, handwashing, clothing sensitivity, sexually intrusive thoughts, aggression, moodiness, "peeing a little", more separation anxiety. At this point we had not sought treatment for her bc all of these symptoms would come and go, in fact in August they were gone again until school started at the end of August. In Sept her PCP sent her to a therapist. I must add that I mentioned PANDAS to both and was blown off. The therapist said this is "Def OCD" and sent us to the psychiatrist. She just confirmed a Dx of OCD and again ignored my PANDAS questions. Next doc we visit believes in PANDAS and ordered labs and tests. All of which were normal. In the meantime we meet with 2 doctors in the PANDAS clinic at children's hospital of Pittsburgh. They gave her the official PANDAS Dx, which don't get too excited they are not willing to treat except with SSRI's and intense cbt. All the while my daughter is getting worse, Hyperactivity now in the picture and won't go to bed for hours after the bedtime. Separation anxiety so bad she is missing school. So we see an ENT around this same time who thinks sleep apnea could play a role in the behavioral changes so tonsils and adenoids came out 2 Fridays ago. During our desperation while waiting for surgery day and her symptoms were worsening we called the PANDAS believer and he gave her a 10 day rx for Omnicef. Day 7 of abx we saw dramatic improvement! (Day 8 was surgery day). So days 7-10 were Great! So here we are 9 days post op of t&a and 7 days w/o abx we see symptoms slowly creeping back into her everyday life. However, no where near as debilitating as the week prior to surgery/abx. So I believe we are at a crossroads. Do we go back to abx and try for IVIG (that my ins doesn't cover) or go homeopathic? My brain is spinning! Any suggestions please!?

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I would get her on antibiotics as soon as posible while you are looking into the homeo. route and waiting for appointments. Another strep exposure could be at anytime and with each exposure, things get worse! I wish I could send you some of our Augmentin XR to try, but it is "priceless" and much needed with our ds. Make sure that you whole family is cleared from being "strep carriers". Our PANDAS kids react to strep in the enviornment without even needing to have the infection themselves.

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Be careful with homeopathy. We had a horrible experience with our board certified MD that was "learning" homeopathy. She gave our son a supplement that his body could not handle and he literally went CRAZY for about 2.5 weeks. We almost had to put him in a psych ward- it was horrific! Thus said, if your child is sensitive to medicines, etc., and you decide to go forward, make sure that you proceed very slowly. For example, our son is very sensitive and a normal dose of 6 drops he will begin with 1 drop and then wait 5 days before we increase it to the next drop. Also, we do not start with multiple medications/supplements. We slowly add them, one at a time.

 

Also- as an FYI- if you are considering the study hold off on the steroid burst or use of steroids as this will preclude you from the study.

 

 

We are currently doing a prophylactic dose of abx, completed a steroid burst about 3 weeks ago and our son has his first IVIG this Friday.....and we are working with a homeopathic doctor in another state currently that we do trust- so he is still on a few different supplements that are helping him to detox.

 

In the course of searching for what was wrong with our son we completed a series of blood work with an infectious disease pediatrician. The pediatrician found that our son's white blood cell count was low- causing him to have mild neutropenia. This was a huge blessing- as this diagnosis covers the IVIG. It might be something you want to check on to see if there are other co-factors going on that would pay for the IVIG.

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Thank you for your replies, I will take them all into consideration. I am going to call about the study tomorrow to be sure about the qualifications. We will work on getting ourselves strep tested. Do you know if a oral swab is enough or ASO titers will be needed. As for the homeopathy we will proceed with caution if we go that route. Thanks for the advice!

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Hi there...

 

We went the IVIG route (several times with DD10) but are now doing homeopathy and the GAPS diet. Our homeopath is Joette

Calabrese (google her name for her website). We've had a lot of improvement even though we are still working through issues. For us

the antibiotic usage wasn't accompanied by dramatic enough improvement to continue its use. Hope that helps!

 

God bless,

Holly

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