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I'm begining to doubt myself and need advice


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My kid had the sudden onset OCD and a tick on the first day of school. By the end of Sept we had her enrolled in an OCD clinic. Then I found this website and was able to convince our family doc to put her on Keflex. We did two rounds of 10 days. Her last dose was Nov 6th. We have seen much improvement. Minor tic is gone, puppet stance and finger wiggling and rages are gone. Mood is very improved and as of yesterday, she is starting to not need me to hold her hand constantly. (still has the separtation anxiety just not as bad, and still has the OCD.

 

Now here is my dilema. I have made an appt with Dr. Bouboulis for dec 6th. He sent me the papers to take to my doc to get all the blood work. My doctor informed me that although he is very interested and believes that maybe she is Pandas, he can't order the blood test because they are not ones he would order normally. UPMC will give him trouble. (my hmo). I can't seem to find ANYONE in the area with my insurance who will even SEE her.....

I know the paper says that DR B will order the tests once he sees her if I cant get it done before hand, but my heart sankk last night...

 

I receive emails from an OCD support group and one of the ladies on there said that she went to Dr. B and after her first visit he would not see her again because he does'nt take her insurance. He did however give her a script for IVG. (but not directions for her doc)

 

 

I am still seeing improvements as of last night and this morning. Improvements that have nothing to do with clinic. For example: Normally she will not move from her matress till I pull off the blanket and hold her hand for her to get up and then hold it to the livingroom chair. This morning she had my take the blanket off and then got up herself :) and walked to the livingroom and hopped on the chair without my holding her hand and yanking me.

 

Could we still be seeing improvements from when she was on keflex? Or should I believe that she only has OCD? Should I still go see Dr.B and let him give a script to get the blood workk and then keep looking for someone to see her? I honestly believe that all the improvements that I'm seeing (not counting the reading and writing) are from the keflex. I truely am begining to think she may be one of the lucky few that with proper dosing of abx that she may not need IVG, just long term ABX.

 

Sorry this is so long. I just need some direction or thoughts.

 

Anyone here from the tri-state area or close? pa/wv/oh? help?

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My kid had the sudden onset OCD and a tick on the first day of school. By the end of Sept we had her enrolled in an OCD clinic. Then I found this website and was able to convince our family doc to put her on Keflex. We did two rounds of 10 days. Her last dose was Nov 6th. We have seen much improvement. Minor tic is gone, puppet stance and finger wiggling and rages are gone. Mood is very improved and as of yesterday, she is starting to not need me to hold her hand constantly. (still has the separtation anxiety just not as bad, and still has the OCD.

 

Now here is my dilema. I have made an appt with Dr. Bouboulis for dec 6th. He sent me the papers to take to my doc to get all the blood work. My doctor informed me that although he is very interested and believes that maybe she is Pandas, he can't order the blood test because they are not ones he would order normally. UPMC will give him trouble. (my hmo). I can't seem to find ANYONE in the area with my insurance who will even SEE her.....

I know the paper says that DR B will order the tests once he sees her if I cant get it done before hand, but my heart sankk last night...

 

I receive emails from an OCD support group and one of the ladies on there said that she went to Dr. B and after her first visit he would not see her again because he does'nt take her insurance. He did however give her a script for IVG. (but not directions for her doc)

 

 

I am still seeing improvements as of last night and this morning. Improvements that have nothing to do with clinic. For example: Normally she will not move from her matress till I pull off the blanket and hold her hand for her to get up and then hold it to the livingroom chair. This morning she had my take the blanket off and then got up herself :) and walked to the livingroom and hopped on the chair without my holding her hand and yanking me.

 

Could we still be seeing improvements from when she was on keflex? Or should I believe that she only has OCD? Should I still go see Dr.B and let him give a script to get the blood workk and then keep looking for someone to see her? I honestly believe that all the improvements that I'm seeing (not counting the reading and writing) are from the keflex. I truely am begining to think she may be one of the lucky few that with proper dosing of abx that she may not need IVG, just long term ABX.

 

Sorry this is so long. I just need some direction or thoughts.

 

Anyone here from the tri-state area or close? pa/wv/oh? help?

Hello - We see Dr. B and our insurance does not cover him. We pay out of pocket to see him. He never refused us or even suggested that we not see him and, honestly, his rates are a bit less than some other docs. Call the office and ask about rates. Check with your HMO to find out what their policy is on out of area doctors. IVIG without insurance probably about $10,000, so that may not be an option. We are fortunate that we can change to a plan that covers Dr. B in a few months.

 

Also, ask your HMO about their policy for paying for blood work that is ordered by docs outside of the HMO. That may be a problem as blood work can be very expensive. If they do not pay for bloodwork outside of the HMO then you either need to find a doc in the HMO who is willing to order it or file paperwork with the HMO for an exception. Find out what the process is.

 

NIMH has recently changed their website and is more in keeping with diagnosing and treating PANDAS. Many docs do not know this has changed. A "white paper" (preliminary guidelines) for treating PANDAS is in the works and we are all hoping that this will help to move insurance companies toward a Pro-PANDAS stance.

 

PM me if you need more info... Best wishes -

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Oh my gosh! Thank you! I feel so much better! I'm not worried about the $ at this point. May be poor as a pauper but my wonderfull sisters have been helping me out. But if she did ever need the IVG, that would be a hard one. As long as he is willing to see her and work with antibiotics, it gives me time to possibly find someone in the network who is willing to work with her.

 

You have made my day.

 

One more question, do you think that if I called he would be willing to mail me a script for the blood work instead of waiting till we get there?

 

Also, still looking for people here from pa, oh and wv.

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We also see Dr. B and he ordered the bloodwork prior to our first visit with him. We had it done at Quest diagnostics and they faxed all results to him. That will make your first visit a lot more productive because he will already have some info to work with. I would assume PANDAS in your shoes...we had same sudden onset OCD, and no one believed me until I forwarded my family doc some articles about testing for ASO and anti Dnase B titers to rule out strep linked OCD. My family doc called with the ASO results and told us to get Psych help, but I told her I would wait for the rest of the results and...not too much surprise when we got back the anti dNase B titers a week later at 772. Abx helped a good deal, and I kept her on them until we saw Dr. B a month later. So I would say try to get any blood work you can done prior. Stella and the nurses in his office are great and will work to fax you those papers, will work with your lab, whatever. Good luck, stay the course!

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You might call a couple of the national labs in your area and inquire about coverage and getting the bloodwork done. You may be able to get it done w/ a script from Dr B. Check w/ Quest and a couple other of the big labs. I called and was told I could get the bloodwork done and covered, as long as I had a script. I have an HMO too. Fortunately, my DS's ped agreed to run all the labs. Also make sure the lab you take your child to has someone there who does pediatric blood draws.

 

We are switching to a BCBS policy on Jan 1st so we don't need referrals and can get some coverage for out of state doctors.

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My doctor informed me that although he is very interested and believes that maybe she is Pandas, he can't order the blood test because they are not ones he would order normally.

Can he refer you to somebody who can order those tests? Say, an immunologist?

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As for the continued improvement now that she's off keflex...absolutely that can happen!!!! It may be that the keflex finally erradicated the infection. Once the infection is gone, the antibodies should begin to lower. At that point you see improvement.Some PANDAS kids on here are relient on antibiotics to maintain the improvements, but not all. The fact that you continue to see good things is great! You see her healing!!Now, you have to try to keep her immune system calm. Make sure no one else in the house has strep, keep any allergies in check, I would suggest no flu shot or similar. Give her immune system a chance to calm down.

 

Did she test + for strep throat? If so, do a follow up 3 weeks after Nov 6. If she is already on a proph antibiotic, you do run a chance of a false negative, but personally, I would still check.

Edited by Vickie
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Hello - We see Dr. B and our insurance does not cover him. We pay out of pocket to see him. He never refused us or even suggested that we not see him and, honestly, his rates are a bit less than some other docs. Call the office and ask about rates. Check with your HMO to find out what their policy is on out of area doctors. IVIG without insurance probably about $10,000, so that may not be an option. We are fortunate that we can change to a plan that covers Dr. B in a few months.

 

Also, ask your HMO about their policy for paying for blood work that is ordered by docs outside of the HMO. That may be a problem as blood work can be very expensive. If they do not pay for bloodwork outside of the HMO then you either need to find a doc in the HMO who is willing to order it or file paperwork with the HMO for an exception. Find out what the process is.

 

NIMH has recently changed their website and is more in keeping with diagnosing and treating PANDAS. Many docs do not know this has changed. A "white paper" (preliminary guidelines) for treating PANDAS is in the works and we are all hoping that this will help to move insurance companies toward a Pro-PANDAS stance.

 

PM me if you need more info... Best wishes -

 

I think I may have misrepresented the NIMH website changes (above). It is not like the website turned into a "Wow... PANDAS exists and everyone with neuropsych symptoms should be tested for it" website. It is just a little less hostile! My understanding is that the website was updated in July 2010 and now states that IVIG is indicated for severe cases under the direction of qualified physicians. I believe the website previously said that IVIG should be used in research studies only and not used clinically.

 

I think the larger piece is probably the NIMH director's post from August, which is clear support of PANDAS as a "real" disease / disorder, and is in favor of the IVIG studies, and states that they are anicipating IVIG will help to decrease OCD.

 

http://www.nimh.nih....index-ocd.shtml

 

All of this, coupled with the recent murphy/kurlan/leckman article (http://www.njcts.org/docs/ImmunobiologyofTDandPANDAS.pdf) is giving me hope that we are moving in the right direction~

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We also see Dr. B and he ordered the bloodwork prior to our first visit with him. We had it done at Quest diagnostics and they faxed all results to him. That will make your first visit a lot more productive because he will already have some info to work with. I would assume PANDAS in your shoes...we had same sudden onset OCD, and no one believed me until I forwarded my family doc some articles about testing for ASO and anti Dnase B titers to rule out strep linked OCD. My family doc called with the ASO results and told us to get Psych help, but I told her I would wait for the rest of the results and...not too much surprise when we got back the anti dNase B titers a week later at 772. Abx helped a good deal, and I kept her on them until we saw Dr. B a month later. So I would say try to get any blood work you can done prior. Stella and the nurses in his office are great and will work to fax you those papers, will work with your lab, whatever. Good luck, stay the course!

 

Thanks, I'm going to call today. Do you think they would fax it to the lab? I use a Quest lab also.

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My doctor informed me that although he is very interested and believes that maybe she is Pandas, he can't order the blood test because they are not ones he would order normally.

Can he refer you to somebody who can order those tests? Say, an immunologist?

 

I called the one he refered me too, including countless others... they don't want to deal with it here. Also called my sisters rhuematologist and he said he only sees ppl 18yrs and up. grrrr. all I want is a script for lab work, why is it so taboo for a lab test?!

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