Really blowing it...but...

[amyjoy]

Just to echo the sentiments of the group, I want to encourage you to not brush this under the table in your great wish to have everything be ok. I wish I wish I wish I could turn back the clock to an earlier time where strong intervention during a more acute phase of my DS's illness could have prevented years of sorrow and suffering on all of our parts.

 

This may be your moment to take matters into your own intuitive hands and stay the course of steady treatment now. We as the PANDAS moms of the universe support you with all of the courage and good juju it takes to pursue this path against the grain of your comfort zone and medical advice.

Many blessings to you!!!

[mama2alex]

This may seem like a strange suggestion at first, but one option for obtaining the antibiotics would be to see a Lyme-literate doctor. They are usually familiar with PANDAS, as Lyme and strep often go hand in hand. Many families from this forum have received a diagnosis of Lyme and have had good success working with Lyme doctors, so it's also worth it to specifically look into Lyme and coinfections. But in the near term, I think its very likely a Lyme doc will help you with the antibiotics for strep, even if they find no signs of Lyme. They will also be able to test her for a number of other issues which could be causing/contributing to her OCD, such as viruses, heavy metals, etc. You can find one in your area by emailing ILADS (International Lyme and Associated Diseases Society).

[Stephanie2]

I don't really know what else to do. I wrote about 10 days ago about my daughter. She was having OCD behaviors, tested positive for strep, got antibiotics, and was doing better two days after starting meds. I asked for advice and got great ideas here. But, after talking to my husband we decided to try and stay with local Drs(he is incredibly uncomfortable working with someone we have never met).

 

I have met or talked with about 4 Drs in the area and they all said they either don't believe in it or don't believe that this is what is going on with my daughter. They can't see the tie. There is one that said she believed in it(an immunologist) but that she will not treat for it and that I need to go to a neurologist and gave me a name. I just want someone to keep her on antibiotics. I also tried to make an appointment with the local Dr. that was recommended to me from someone on here and he has a two month wait.

 

So now she has been off of antibiotics and she shoved a table across the room in a tantrum tonight and went back to telling me how horrible she is and about all of the awful(to her) thoughts she is having. She has also started to spell half of the words she says and told me she doesn't understand why she is doing this. What do I do next? Should I call the Neurologist. Wait a month for the local Dr that has helped one of the kids here or push my husbands to change his mind and go out of state for help? She has been great for the last week and a half. The hand washing went from 30-40 times a day to 3 times a day and not one tantrum. I don't see the handwashing increasing at all right now so maybe I am just being too hypersensitive to a normal 9 year old tantrum. Do 9 year olds have tantrums? Her twin does not and I don't remember her older brother having them.

 

We ended up having a very nice night and played games and goofed off tonight and all seemed normal after the blowup so maybe I am overreacting and I need to wait this out?

 

Sorry for the rambling post. You have all been very helpful.

 

I see that this is an old post and I haven't read any of the responses. Just wanted to say that hands down I believe her pandas has come back (I have had experience with the spelling of words, that is a compulsion - pure OCD). I want to caution you that the longer this current exacerbation goes untreated, the more invasive the level of treatment that will be necessary to bring it down. Our last one that went untreated required IVIG in the end. I have since learned my lesson and I get on top of strep within 24 hours whenever possible. Sorry if this is redundant or you have already done something about it...just wanted to alert you...