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Dr. Latimer in August or Deborah McCabe or Dr. B


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Hi,

 

I need help figuring this out. Just sat at the breakfast table with my husband having the same discussion.

 

Right now my son saw some improvement with antibiotics but they would only prescribe a z pack. I did get DAN doctor to prescribe Zithr. 250 mg 1 time a week. I did tell him that I read that many say it takes months of antibiotics to clear a PANDAS strep. The pediatrician is useless and just handed me 3 hospital names and said call for a specialist.

 

So I called Dr. Latimer as she is 1 hour away and this will work great if he gets IVIG. But I can't get in there until August 15,.

 

I have the name of Deborah McCabe who I got off of this Board and she is in Washington DC. She is PA....maybe she can help with long term antiobitics for my son in the interim until I get in to Latimer. Anyone have any experiences with Ms. McCabe.

 

Or should I just drive my son by myself to Conn. to see Dr. B. I don't even know what his wait list is like. I just don't want to get started on one track and then come back to Latimer since she is closer and have her say....why did you do that? Still I am sitting here and once I draw the bloodwork today, I will be stuck until August which is too long.

 

I will have consult with DAN on Friday to go over bloodwork and see where he wants to go next. I know for a fact, he has already asked me what insurance we have in case my son needs IVIG. Yet, I feel like even though he has experience treating PANDAS kids, he doesn't know it like Latimer or the other top ones do. But maybe he could start pursuing the insurance company for IVIG now.

 

Any thoughts for those of you who have been through this already? If it sounds like I am all over the place, I am. Just trying to make best decision for my son.

 

Thanks,

Kim

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I would get all my ducks in a row with all testing and get more antibiotics With this doc you are working with (maybe higher dose depending on age/weight of your child) and hang tight for Latimer. Being only an hour away from a doc with her reputation would be worth the wait to me.You will be looking at 6-8 weeks wait on Dr. B - by the time you wait through that you are already half way to your appt with Dr. L. Let her office know you can come on quick notice if they have a cancellation.

Edited by fightingmom
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You are doing great, kimflow!

Do not cancel latimer, but maybe call dr b and see how long the wait is. Even if you go see him, keep that appt with her and decide much later whether to get rid of it.

Several people go to multiple pandas docs. It is ok and dr latimer would not mind. Worse thing that could happen is you spend more money and have more labs, information and opinions and are armed with more info when you make a decision.

We see her, so she is my preference:)

But I know the feeling you are experiencing and I think some movement and getting started might make you feel better and might get your son on the road to recovery already!

Also remember they are specialists first and PANDAS docs second. They will each a particular bent they will look at PANDAS from.

I sent you an email a few days ago, too! Hope it came through.

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I would keep your appt with Dr. Latimer, but make an appt with Dr. B as well. You will leave his office with a prescription in hand. Typically, I think he is about 8 weeks out. Just call on Monday and make an appt. You can always cancel in the meantime if you choose to do so.

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Hi,

 

I need help figuring this out. Just sat at the breakfast table with my husband having the same discussion.

 

Right now my son saw some improvement with antibiotics but they would only prescribe a z pack. I did get DAN doctor to prescribe Zithr. 250 mg 1 time a week. I did tell him that I read that many say it takes months of antibiotics to clear a PANDAS strep. The pediatrician is useless and just handed me 3 hospital names and said call for a specialist.

 

So I called Dr. Latimer as she is 1 hour away and this will work great if he gets IVIG. But I can't get in there until August 15,.

 

I have the name of Deborah McCabe who I got off of this Board and she is in Washington DC. She is PA....maybe she can help with long term antiobitics for my son in the interim until I get in to Latimer. Anyone have any experiences with Ms. McCabe.

 

Or should I just drive my son by myself to Conn. to see Dr. B. I don't even know what his wait list is like. I just don't want to get started on one track and then come back to Latimer since she is closer and have her say....why did you do that? Still I am sitting here and once I draw the bloodwork today, I will be stuck until August which is too long.

 

I will have consult with DAN on Friday to go over bloodwork and see where he wants to go next. I know for a fact, he has already asked me what insurance we have in case my son needs IVIG. Yet, I feel like even though he has experience treating PANDAS kids, he doesn't know it like Latimer or the other top ones do. But maybe he could start pursuing the insurance company for IVIG now.

 

Any thoughts for those of you who have been through this already? If it sounds like I am all over the place, I am. Just trying to make best decision for my son.

 

Thanks,

Kim

 

Since Debbie McCabe isn't a MD, so she wouldn't be able to rx abs (unless she is working with a MD who you also see)?

 

250mg/week Azith is WAY too low. How much does you son weigh? My dd has been on 250mg/day Azith since she was 7 years/43 pounds.

 

Even if you go to a lower dose EVENTUALLY, usually most PANDAS folks find using full-strength antibiotics for the first 2-3 mo. helpful, to see what kind of improvements you can get...and then eventually wean down in dosing if appropriate.

 

I agree with the others about making appointments with both Dr. B. and Dr. Latimer.

Edited by EAMom
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We've seen all 3. They all have a diffrent view but all are great. Mccabe can get you started with antibiotics but in my opinion she would be a starting point but you would want to get in with an expert (dr L or B) My guess is you can probably get into McCabe the quickest.

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I agree with kiera. Try and get a phone consult if you are having to wait so long. At least you may be able to get the abx until your appt comes up. Many on the forum have more than one pandas doc as they all have somewhat different protocols. It will help you to decide which one resonates for your child's needs. I know dr. K in Chicago does phone consults and I would check about dr. B and dr. T too.

Best of luck!

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IS Dr. K (Dr. Kriwinsky)? I saw him on a video with a little boy who had IVIG.

 

many thanks for all the suggestions.

 

I guess it is phone consult with another doctor or Deborah McCabe. I will start to work on this tomorrow.

 

Kim

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