How long to wait to be seen?

[airial95]

I think everyone agrees you need a specialist on board, and shoot for appointments with both of them, and see which pops up first. (Getting on the cancellation list is key - I've done it with our neurologist and immunologist and cut the wait time down from 3-6 months to a couple of weeks - you just need to be able to go on a day's notice.)

 

Having said that, I would also echo what dcmom said, especially about having a doc to get to quickly. If you have a good relationship with your pediatrician, I would try to work on getting them on board. Even if they're not 100% there, if they're willing to work with the other specialists, it's always handy to have someone close by. An open-mind is the first step.

 

Our pediatrician had treated about a half dozen cases before he dx our son. After 6 months, he admitted our son was the most complex case he'd dealt with, and recommended we see a specialist (right now, we see Dr. Murphy - she's local for us). Even though she confirmed the dx and has helped, our pediatrician is still our first line of defense when we see things flare up. We've had our son in his office within hours of radical changes for rapid swabs (usually positive!!) and an immediate change/renewal of our abx without having to wait on the specialists.

 

I know we're a rarity with an understanding pediatrician, but having that quick response for us has been really helpful. So if your pediatrician (or another pediatrician) is willing to at least be open to the options, it really can be useful.

[Baylor]

Thanks. I love our Ped. He is so awesome with my kids. I hope he will bend a little and be able to open up to this. If not I will still use him but I will need to find someone local to treat.

 

Today I keep just beating myself up for waiting so long. For not standing up to the drs when I brought it up and they blew me off. I KNEW something was different. Now it has been probably 6 months since first sign and I am concerned I have waited to long for him to be helped and hopefully cured.

 

I am off to get Saving Sammy today. I just need to read the positive story of a warrior mom and a brave boy.

Are there any local PANDAS support groups anywhere?

[dcmom]

Baylor-

 

There is no reason your child can't be helped- many parents on this board have kids who were not diagnosed for years.

 

I have two daughters, one was diagnosed within a few weeks, the other it took about 6 months. Both are doing really well, about the same, frankly.

 

There is no guarantee for a cure, whenever diagnosed and treated, but there is hope for long and full remission, for all.

 

Don't beat yourself up!

[Christianmom]

Not trying to encourage you to go to Dr. Elia or not, but just wanted to say that I think the long wait would be for your first appointment as I would guess it is an hour or two long. Any future appointments you should be able to get in much quicker. Might want to ask how long you have to wait for a short follow-up appointment.

[Baylor]

Dcmom, thanks so much for that!

 

Christianmom, that makes sense. Once I see Dr T or get the right diagnosis and am under treatment, I will call back and see what happens next. For those of you that see mulitple doctors, Do you carry results, files with you? How do you make sure each dr has all the right information?

[airial95]

Baylor,

 

My son had symptoms for over 6 months before we sought treatment as well. Don't beat yourself up. We let everyone convince us it was just the "Terrible 2's" and that "boys are harder than girls" and the like. Deep down, we knew in our guts something was wrong. And the same day we went into our pediatrician, we were dx. (Our pediatrician took the apporach - I can refer you to a ped. psych, but they're going to drug your kid, or we can try 30 days of abx for this weird thing called PANDAS and see what happens, he had impetigo right before you started having problems - worst case, we're no worse off than where we are now. I'm VERY thankful for what we came to call the "spaghetti diagnosis" - throw it against the wall and see what sticks!)

 

Our son is now almost 2 years into his journey, and it hasn't always been easy for us, but I can say that so far abx alone has gotten us back to almost 90% at times (chronic re-infection - even on full strength abx is our battle). We know he can come out of it - if we can only keep him from getting strep in the first place...I probably wouldn't be hanging around here as much!!

 

After our dx, it took us around 9 months to get a full team of doctors together - the pediatrician, behavior therapist, specialist and neurologist. A side note - our neurologist is somewhat skeptical of PANDAS - he believes there's something to it, but is of the mind you HAVE to have elevated titres for it to be PANDAS (which my son has never had - even with postivie cultures). He doesn't disagree with our current treatment approach, since my son clinically has had documented strep, but I actually like having the silent skeptic on our team - it keeps us from forcing symptoms to fit the PANDAS dx that may be an indicator of something else (PANDAS aside).

 

Good luck!!

[Christianmom]

Dcmom, thanks so much for that!

 

Christianmom, that makes sense. Once I see Dr T or get the right diagnosis and am under treatment, I will call back and see what happens next. For those of you that see mulitple doctors, Do you carry results, files with you? How do you make sure each dr has all the right information?

 

You will find that Dr. T, though great in many ways and very caring, has administrative problems and is very over-worked. Because of this I have all labwork faxed to my son's family doctor as well as Dr. T's office. That way I can run down to my son's local doctor and get a copy of the results. I then scan them into my computer and send them to Dr. T (that way he has all my son's bloodwork together in an e-mail and doesn't have to go looking for a bunch of faxes). I know this sounds crazy, but it is a way of helping Dr. T keep all your son's labwork together. Every time I have a consult with him, I re-send the labwork in an e-mail, so we can talk about it.

 

This is also helpful if you do go to another doctor as you already have all your son's labwork in one place. Any new doctor will probably want a copy of all labwork.

[Baylor]

Baylor,

 

My son had symptoms for over 6 months before we sought treatment as well. Don't beat yourself up. We let everyone convince us it was just the "Terrible 2's" and that "boys are harder than girls" and the like. Deep down, we knew in our guts something was wrong. And the same day we went into our pediatrician, we were dx. (Our pediatrician took the apporach - I can refer you to a ped. psych, but they're going to drug your kid, or we can try 30 days of abx for this weird thing called PANDAS and see what happens, he had impetigo right before you started having problems - worst case, we're no worse off than where we are now. I'm VERY thankful for what we came to call the "spaghetti diagnosis" - throw it against the wall and see what sticks!)

 

Our son is now almost 2 years into his journey, and it hasn't always been easy for us, but I can say that so far abx alone has gotten us back to almost 90% at times (chronic re-infection - even on full strength abx is our battle). We know he can come out of it - if we can only keep him from getting strep in the first place...I probably wouldn't be hanging around here as much!!

 

After our dx, it took us around 9 months to get a full team of doctors together - the pediatrician, behavior therapist, specialist and neurologist. A side note - our neurologist is somewhat skeptical of PANDAS - he believes there's something to it, but is of the mind you HAVE to have elevated titres for it to be PANDAS (which my son has never had - even with postivie cultures). He doesn't disagree with our current treatment approach, since my son clinically has had documented strep, but I actually like having the silent skeptic on our team - it keeps us from forcing symptoms to fit the PANDAS dx that may be an indicator of something else (PANDAS aside).

 

Good luck!!

 

Thank you. this post also made me think of something his teacher said last year, That they had multiple kids with strep last year in the class. he had it 3 times. How do you control exposure to strep in school? ugh.

[Baylor]

Christians mom, I can not figure the multiquote here so bear with me lol..

 

I see what you are saying.

 

Is there any good documents I can take with me to my appt tonight to help dr with this? I don't want to seem like a google know it all but I want to be able to show him I have been really researching and am not just a crazy mother..

[beeskneesmommy]

Back to the waiting for an appointment w/Elia - In Sept. of 2010, my son had an acute episode after a T&A while infected w/Strep. I frantically called Latimer and a couple others. NO ONE would fit us in before 2 months, even when I told them that my otherwise completely normal son was staring right thru me, having severe vocal/body tics and choreiform movements, and appeared to be unable to process info for 3 days straight. When I called CHOP, I had no previous connection with Dr. Elia. The receptioist turned me away with the typoical 2 month thing. I made a point of telling her that my son had a PANDAS dx, and that he was in very bad shape, and that I needed help NOW. She left me on hold, spoke with Dr. Elia's coordinator, came back on the line and said Dr. Elia prefers to see PANDAS kids right away. We have an opening Tues. Can you come? This was on a Friday and I packed our bags and we drove like bats out of ######. You have to push, to make yourself understood. Receptionists are not medical people and they don't really care! Explain your situation and ask them to talk with her coordinator. Don't give up! You are close by and 1 visit can confirm dx and get your kiddo started on ongoing meds which are absolutely necessary to start with!!!

 

I truly believe that Dr. Elia saved my son! I truly believe that if we had waited 2 months without treatment, we would have lost him to the horrible PANDAS abyss and may never have had the opportunities for recovery that we have now.

[Baylor]

Back to the waiting for an appointment w/Elia - In Sept. of 2010, my son had an acute episode after a T&A while infected w/Strep. I frantically called Latimer and a couple others. NO ONE would fit us in before 2 months, even when I told them that my otherwise completely normal son was staring right thru me, having severe vocal/body tics and choreiform movements, and appeared to be unable to process info for 3 days straight. When I called CHOP, I had no previous connection with Dr. Elia. The receptioist turned me away with the typoical 2 month thing. I made a point of telling her that my son had a PANDAS dx, and that he was in very bad shape, and that I needed help NOW. She left me on hold, spoke with Dr. Elia's coordinator, came back on the line and said Dr. Elia prefers to see PANDAS kids right away. We have an opening Tues. Can you come? This was on a Friday and I packed our bags and we drove like bats out of ######. You have to push, to make yourself understood. Receptionists are not medical people and they don't really care! Explain your situation and ask them to talk with her coordinator. Don't give up! You are close by and 1 visit can confirm dx and get your kiddo started on ongoing meds which are absolutely necessary to start with!!!

 

I truly believe that Dr. Elia saved my son! I truly believe that if we had waited 2 months without treatment, we would have lost him to the horrible PANDAS abyss and may never have had the opportunities for recovery that we have now.

 

I spoke to Renee, She gave me her number but I told her that PANDAS was suspected and that I was trying to get him seen but She said there was nothing before first of the year. I will try again. but it took the wind out of my sails.

[Christianmom]

Christians mom, I can not figure the multiquote here so bear with me lol..

 

I see what you are saying.

 

Is there any good documents I can take with me to my appt tonight to help dr with this? I don't want to seem like a google know it all but I want to be able to show him I have been really researching and am not just a crazy mother..

 

I can't help you out there, but I'm sure others will post. I think your PED will probably believe you and hopefully will research it. My only thought was that they may still be leary to write out blood scripts as it requires a diagnosis code. I would just use Dr. T's scripts. But getting your PED involved is great. I put my son in with my personal doctor's practice and she talked for an hour with me, wanting to know all about PANDAS, never thought I was crazy as she trusted me. But by the sam token, though she is willing to work with Dr. T, she didn't want the responsibility of recommending treatment. She was afraid she could not give my son justice. So basically she wanted Dr. T to take the lead. So far I have just dealt with Dr. T directly for this. I only have the local doctor for a backup in case my son should have an emergency and need to be seen (for example a reaction to an antibiotic). So far my son has not had any "emergency" type of symptoms that have ever required us to take him to the ER. So maybe my case is different.

[beeskneesmommy]

I am very sorry to hear about that. Is PANDAS 'suspected' or do you have a diagnosis? You really have to get assertive (but respectful - don't want to irritate the powers that be) thru this process. I know that with all of the press over the past year, Dr. Elia has had a flood of patients. It took me less than 2 months to get in with Dr. B. Have you made appts with him or Dr. T so that you at least have them?

[EAMom]

Here's another doc in PA...check out post #88 in this thread:

http://www.latitudes.org/forums/index.php?showtopic=5023&st=75

 

You might contact Tantrums for more info?

[philamom]

Baylor- I have a family doctor in our area (philly suburbs) that would be willing to prescribe abx and run labs under the direction of a PANDAS doctor. Send me a pm if you are interested. He takes insurance and no wait! And he's extremely nice - great with the kids!