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I agree with Kayanne--If it was our d, with school starting especially, personally I'd try for at least another month of antibiotics to keep things steady and then lower the antibiotics slowly to see if things remain steady. I failed to mention in my earlier post on this thread that once we decided to keep my d on full strength antibiotics she has been relatively steady.

 

No colds, and only very mild fluctuations in OCD issues, and infrequent mild tics. I am sending her to school next week a very different child than she was most of last year. (8 months of full strength antibiotics, and continuing)

 

Your child has had a great response to the steroids and antibiotics, thankfully.

All the best,

T

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Went to Infectious Disease today. They will not help us at all. Even though last time they said they would if it happened again - which it has!!!!!

 

He finished Day 20 of Keflex yesterday and now we have none. I left a message with pediatrician to call me.

 

He said that it was a coincidence that my son got better on antibiotics and he thought that I should go back to psychiatrist. Words can not tell how disappointed and frustrated I am. He said he thought that the steroids could have altered his behavior. I was so on "my game" and so professional - non confrontational.

 

It sucks so much that we have to advocate for help!!

 

What really stunk is that the nurse told me that the Dr we were seeing and the head of the division were on the phone talking about our case - even before he saw us!! Then to be so resistant. I asked him is this the position of you or the Institution and he said it was the position of him and the Institution. They do not believe in PANDAS.

 

How do I find the phone numbers of the doctors that do believe in PANDAS? Who has helped you?

 

A

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I am so sorry that physician was not helpful. I think it is horrible what parents must go through, but there are many physicians who know that PANDAS is real! Where do you live so people can help get you names and numbers?

Hang in there. You will find help.

 

Colleen

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I'm sorry the appointment was a disappointment...We saw an ID specialist at CHOP, and I left in tears. He told us because this was her first episode, he couldn't really say it was PANDAS because she yet has to show the waxing and waning pattern...."but if she has another episode then, I would definately say it was PANDAS"....very generous, don't you think?

 

It sounds as if your pediatrican has been very helpful...I hope that continues...If he/she is willing to just follow the protocol for prophalactic antibiotics for RF or SC, then your child should be protected.

 

Did the steroid bring your child back to 100%? We had my dd6 on prednisone for six weeks, and she is fully recovered....just started her first day of school with no problems!

 

Have you been in contact with Diana Pohlman? She has a list of helpful doctors...you can contact her through www.pandasnetwork.org

 

Also, if you are accessable to the DC area, then maybe you could consider an appointment with Dr. Beth Latimer. I also know that Dr. Latimer is willing to talk to other doctors...in case your pediatrican has questions....it just may take some time because of the busy schedule of doctors...ya know, phone tag.

 

 

 

Went to Infectious Disease today. They will not help us at all. Even though last time they said they would if it happened again - which it has!!!!!

 

He finished Day 20 of Keflex yesterday and now we have none. I left a message with pediatrician to call me.

 

He said that it was a coincidence that my son got better on antibiotics and he thought that I should go back to psychiatrist. Words can not tell how disappointed and frustrated I am. He said he thought that the steroids could have altered his behavior. I was so on "my game" and so professional - non confrontational.

 

It sucks so much that we have to advocate for help!!

 

What really stunk is that the nurse told me that the Dr we were seeing and the head of the division were on the phone talking about our case - even before he saw us!! Then to be so resistant. I asked him is this the position of you or the Institution and he said it was the position of him and the Institution. They do not believe in PANDAS.

 

How do I find the phone numbers of the doctors that do believe in PANDAS? Who has helped you?

 

A

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I hope that the pediatrician will continue to be great....just nervous due to the ID appt this morning and their communication.

 

The steroid was for 5 days and brought my son back to 85%...then continued with antibiotics...about 90% now...nervous because his glands are still swollen.

 

 

 

I'm sorry the appointment was a disappointment...We saw an ID specialist at CHOP, and I left in tears. He told us because this was her first episode, he couldn't really say it was PANDAS because she yet has to show the waxing and waning pattern...."but if she has another episode then, I would definately say it was PANDAS"....very generous, don't you think?

 

It sounds as if your pediatrican has been very helpful...I hope that continues...If he/she is willing to just follow the protocol for prophalactic antibiotics for RF or SC, then your child should be protected.

 

Did the steroid bring your child back to 100%? We had my dd6 on prednisone for six weeks, and she is fully recovered....just started her first day of school with no problems!

 

Have you been in contact with Diana Pohlman? She has a list of helpful doctors...you can contact her through www.pandasnetwork.org

 

Also, if you are accessable to the DC area, then maybe you could consider an appointment with Dr. Beth Latimer. I also know that Dr. Latimer is willing to talk to other doctors...in case your pediatrican has questions....it just may take some time because of the busy schedule of doctors...ya know, phone tag.

 

 

 

Went to Infectious Disease today. They will not help us at all. Even though last time they said they would if it happened again - which it has!!!!!

 

He finished Day 20 of Keflex yesterday and now we have none. I left a message with pediatrician to call me.

 

He said that it was a coincidence that my son got better on antibiotics and he thought that I should go back to psychiatrist. Words can not tell how disappointed and frustrated I am. He said he thought that the steroids could have altered his behavior. I was so on "my game" and so professional - non confrontational.

 

It sucks so much that we have to advocate for help!!

 

What really stunk is that the nurse told me that the Dr we were seeing and the head of the division were on the phone talking about our case - even before he saw us!! Then to be so resistant. I asked him is this the position of you or the Institution and he said it was the position of him and the Institution. They do not believe in PANDAS.

 

How do I find the phone numbers of the doctors that do believe in PANDAS? Who has helped you?

 

A

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If you are willing to travel, then I wouldn't hesitate to see Dr. Latimer...however, it may not even be necessary if your ped. is willing to do what it takes.

 

IMHO there are three things that need to be addressed with PANDAS:

 

1) The infection must be cleared...or kept at bay if clearing it is not possible.

 

2) Brain inflammation should be addressed---steroids, PEX, IVIG to bring a child back as close as possible to baseline.

 

3) Prophylactic antibiotics should be used to prevent future strep.

 

Good Luck.

 

~Karen

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The one I called said she would help my son and give him the propholactic antibiotics I can't can't anywhere else, but many (like her) don't take insurance. It's sad that I can't help my son because money is tight. That's an awful feeling.

 

I would recommend calling them, though. She returned my call within a couple days and answered questions.

 

 

 

Sorry if this is a bad question...

 

Do DAN doctors help with PANDAS patients?

 

 

http://www.autismwebsite.com/practitioners/us_lc.htm

 

there is a Dan doctor in Macon.

 

There are also a couple in South Carolina, if that's closer.

 

Northern Florida has a good neurologist, I hear.

 

Good luck!

Michael

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I don't know if there is anyone closer to you listed, but at the top of the ACN forum page, under "helpful threads" there is a thread where parents have posted doctors who were helpful to them--there may be someone closer to you than Washington DC in that thread. Also, Diana Pohlman may know of someone, definitely worth calling her.

 

Here is what I'd suggest (which you probably are already doing I know!)

 

1. Keep a detailed log of responses/behaviors to medications of all types

2. Enlist others to document if necessary or possible (so it isn't just you--) your child's behaviors (we had the school help)

3. On the sly Video or audio tape your child's behavior when OCD or ticcing is occurring and take that with you to the doctor

4. Ask for a trial of one month of antibiotics AS A TRIAL (of course knowing you will need more...)

5. Document the response and take that in to the "helpful" doctor --

 

** I got to the point that I literally just tried calling local pediatricians at one point to see if they knew anything about PANDAS issues.

 

Hang in there--

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Wow Karen,

you said it in a nutshell. Why do so many docs have such trouble grasping these 3 concepts?

 

IMHO there are three things that need to be addressed with PANDAS:

 

1) The infection must be cleared...or kept at bay if clearing it is not possible.

 

2) Brain inflammation should be addressed---steroids, PEX, IVIG to bring a child back as close as possible to baseline.

 

3) Prophylactic antibiotics should be used to prevent future strep.

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We are scheduled to see Dr Latimer on the 17th. Got plane tickets today. So tired of trying to educate drs ... want someone that knows what is going on.

 

Will write after our appt.

 

Heres hoping my son will be ok of the antibiotics until then. Pediatrician will no longer prescribe but sad she will work with whatever Dr Latimer says.

 

A

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We live in Atlanta. I will happily fly my son to a dr that knows about PANDAS...Is Dr Lattimer the person to call?

 

Thanks - I also left in tears. It is so frustrating to live in a big city like we do and not be able to find anyone to help.

 

Alicia

 

We see a Dan! doctor in Charlotte, NC. He new to PANDAS but helping us nicely. Of course Dr. Latimer is an expert....

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