She has an appointment with Dr. Bouboulis!

[kferricks]

Ok. Wish me luck here. The appointment is Dec 6th. My insurance does not cover so I will be paying $300 cash... but I called my insurance and they gave me the information for filing a request for authorization based on medical need. I also email my doctor and gave him the info along with the phone and fax#'s to do this. I also asked if he would be will to work with Dr.B and if he could either order more Keflex or if he would be willing Zithromax or Augmentin. I also listed all the improvements that we have noticed, along with a note that we took her off the zolof and that was when we saw the greatest improvement. The OCD is still full force but she is so much more relaxed and better mood.

 

My sister will also start investigating if she can get us another insurance to have at the same time up in CT that may cover her.

 

Thanks for giving me the strength to do this. I tend to freeze with this kind of stuff. I don't know why, just always have...

 

Will take any prayers that good thing happen with our insurance and that my doc comes through!

 

TIA

[kimballot]

Good for you!!

 

This is truly daunting. Who among us ever thought that they would be traveling great distances to unknown places in search of medical intervention for their child's "rare" condition?

 

It is good that you have an appointment with a PANDAS doc. Be sure to ask for the bloodwork list ahead of time. Have your pediatrician order it and ask the pediatrician to put "please copy to parent" on the orders. That way you can bring a copy to Dr. Bs office when you go and he will have more to work from. You will get more out of your appointment.

 

Best wishes!

[Tamistwins]

Good luck! I too had to pay 300.00 upfront and then it turns out the insurance did cover part of the cost even though they said dr.b was not in my network.

I hope they cover for you as well.

[kferricks]

Good for you!!

 

This is truly daunting. Who among us ever thought that they would be traveling great distances to unknown places in search of medical intervention for their child's "rare" condition?

 

It is good that you have an appointment with a PANDAS doc. Be sure to ask for the bloodwork list ahead of time. Have your pediatrician order it and ask the pediatrician to put "please copy to parent" on the orders. That way you can bring a copy to Dr. Bs office when you go and he will have more to work from. You will get more out of your appointment.

 

Best wishes!

They are sending the list in the mail! Just praying my doc does it... still waiting for his response. will let you know. be back later off to ocd therapy at the clinic.

[kmom]

Good for you! Your are in good hands. Go with a good list of questions b/c it's so easy to forget them when u are in the moment of talking to him. Even with my list, I find I can forget one or two if we get sidetracked in another direction. Dr. B will answer them all. I always feel more at ease after seeing or talking to him.

 

Just wondering, is the ocd therapy helping? I asked Dr. B the other day 1 wk. post IVIG if my DD who still deals with OCD should go back to the behavior therapist we saw 2x in the beginning of all this. He told me that the OCD will diminish with IVIG and abx therapy. He feels if OCD is still an issue 8 wks post IVIG, we do another IVIG and that behavior therapy won't help. I thought I read a while back that it's a mix of beh. therapy and IVIG and/or abx. Best of luck!

[kferricks]

Yes the therapy is helping. I love this place! They are wonderfull and impressed with how hard she is trying. I think it is good for her to be with a bunch of kids who understand and are all at different levels. She goes 4 days a week for 2 1/2 hours. Others go 3, 2 or 1 day. There is one kid who "graduates" next Tuesday. I believe it is helpfull to her knowing that either way she will get through this. It is still hard, but since we quit giving her the zolof, (while on antibiotics) she seems more able to work with the exposures.

 

I do believe she has Pandas, but we already had her in this clinic by the end of the first month of onset. My thoughts were if it is OCD then she is in the best place, if its Pandas, we will get her to the best place and at least the clinic can help her cope till she is healed. Did that make sense? The clinic has been my saving grace for the time being because that was the only time I was not completely stressed and walking on egg shells around her, waiting for the next ritual or next thing that was going to set her off, or the sobbing because she hates her life and its not fair that it happened to her. It is also helpfull sitting there with parents who understand.... much like this place

 

Sometimes I think one of Gods greatest gifts was providing us with the internet to be able to find support, information, or just a place to escape the realities of life with faceless friends who understand or have been there.

[laure]

Congrats, it is so worth it, Dr. B is the best! We might end up spending our child's college education money, but at least she'll have a chance to get to college! Good luck!

[Megs_Mom]

Yes the therapy is helping. I love this place! They are wonderfull and impressed with how hard she is trying. I think it is good for her to be with a bunch of kids who understand and are all at different levels. She goes 4 days a week for 2 1/2 hours. Others go 3, 2 or 1 day. There is one kid who "graduates" next Tuesday. I believe it is helpfull to her knowing that either way she will get through this. It is still hard, but since we quit giving her the zolof, (while on antibiotics) she seems more able to work with the exposures.

 

I do believe she has Pandas, but we already had her in this clinic by the end of the first month of onset. My thoughts were if it is OCD then she is in the best place, if its Pandas, we will get her to the best place and at least the clinic can help her cope till she is healed. Did that make sense? The clinic has been my saving grace for the time being because that was the only time I was not completely stressed and walking on egg shells around her, waiting for the next ritual or next thing that was going to set her off, or the sobbing because she hates her life and its not fair that it happened to her. It is also helpfull sitting there with parents who understand.... much like this place

 

Sometimes I think one of Gods greatest gifts was providing us with the internet to be able to find support, information, or just a place to escape the realities of life with faceless friends who understand or have been there.

 

What a great post. I'm so glad that behavior therapy is helping. Our daughter found great relief in being somewhere that she was understood too, and helping her dad & I understand what she was going through was especially important. She developed a self confidence about her ability to face fear head on, that is pretty cool. I would never ask her to go through that again without abx, but it was an important tool for us as well.

 

I often think about all the parents, doctors and books that have helped us along the way - but I will admit that "Mr Google" is right up there at the top!!!

[kmom]

Thanks for you answer. It makes total sense. I'm so happy you are on the right road!