How long to wait to be seen?

[Baylor]

So I have tried to call the local PANDAS specialist at the local CHOP. I got her on the phone but she kind of Just told me to check with scheduling but that they were really swamped and it could be awhile. I have been emailing Dr T. who said he would do a phone consult and then see him. I don't know what to do. Money is an issue, but not a deciding factor.

 

How much time do I have?

 

I wish there was a step by step protocol.

[MomWithOCDSon]

Unfortunately, we're all just sort of "winging" it as best we can! Every doctor and/or medical center seems to have its own protocols, and all you can do is do your best to work within them and/or get around them when there's an opportunity to do so.

 

Honestly, I would suggest that you go down whatever paths available to you, even if they're parallel. Especially if money isn't an issue. I would call the scheduling office for the doctor at CHOP and get in line; you might also ask to be put on a list for cancellations, if you have the kind of flexibility that will allow you to fill in an available spot at the last minute. I'd also call Dr. T. and get on his appointment calendar; then you'll know who has the first availability. Even if CHOP can take you first, if you can afford to, you might still want to keep the Dr. T. appointment for the benefit of the additional information and support his experience can provide. But if Dr. T.'s schedule allows him to be your first appointment, then you can gauge whether or not to keep the CHOP appointment, though it would still be beneficial to have someone in your corner locally.

 

If both schedules are exceedingly far out, can you appeal to your existing pediatrician for some interim help?

 

And, whichever way you wind up going first, if you decide not to keep the later appointment, make sure to cancel with as much advance notice as possible! There may be another PANDAS family eagerly awaiting the opportunity to fill your unneeded spot!

[Baylor]

 

 

If both schedules are exceedingly far out, can you appeal to your existing pediatrician for some interim help?

 

And, whichever way you wind up going first, if you decide not to keep the later appointment, make sure to cancel with as much advance notice as possible! There may be another PANDAS family eagerly awaiting the opportunity to fill your unneeded spot!

 

I am not sure. I just don't know how my ped will react. I love him but I am concerned he is going to tell me what he did before.. That most drs don't believe it exists. I can not even get through to the scheduler at CHOP and the last message I got was that If I leave a message they will call me with in 3 days..

[Christianmom]

So I have tried to call the local PANDAS specialist at the local CHOP. I got her on the phone but she kind of Just told me to check with scheduling but that they were really swamped and it could be awhile. I have been emailing Dr T. who said he would do a phone consult and then see him. I don't know what to do. Money is an issue, but not a deciding factor.

 

How much time do I have?

 

I wish there was a step by step protocol.

Even if you don't go to CHOP, you might want to make an appointment, because she requires paperwork that Dr. T does not. She will want to review the paperwork before she sees your child for the first time. Also, she may take you sooner if you tell the secretary your chid is a PANDAS patient. Dr. Elia is a psychiatrist and a lot of her new patients are not as critical as your child, so she may take your child a little sooner than another.

[MomWithOCDSon]

I am not sure. I just don't know how my ped will react. I love him but I am concerned he is going to tell me what he did before.. That most drs don't believe it exists. I can not even get through to the scheduler at CHOP and the last message I got was that If I leave a message they will call me with in 3 days..

 

I know the feeling, believe me. I was in the same boat here, and I still tend to sort of "tip-toe" around the local doctors for fear of having them write me off as a crazy, "just-looking-for-excuses-for-her-mentally-challenged-kid" mom. It's infuriating, demoralizing and incredibly frustrating all at the same time! But I keep reminding myself that many of the docs (in my area, at least) are compelled to play the game by rules they themselves don't always set or like, so I try to meet them on grounds and at terms that they have less discomfort with, you know? Sort of a "catching more flies with honey than vinegar" approach.

 

With our first local pediatrician, I walked into her office the day I got DS's blood tests back with the elevated titers with the lab results and a copy of "Saving Sammy" in hand inscribed with a personal note basically begging her to help us. When her receptionist saw the tear-stained look on my face when I walked into the office without an appointment, she asked me to wait a few minutes and she would try to "squeeze me in." Which she did, and at which point I basically broke down in tears in front of the pediatrician and used all of Beth Maloney's most persuasive phrases, like,"If you're comfortable with my 12 year old being given antipsychotic medication, then how could you possibly object to a trial of antibiotics?!?!" She agreed to help us, initially with a short prescription. So, from then on, I would drop her a snail-mail letter every few weeks, detailing DS's progress and usually including a few research papers or two about PANDAS, about the use of antibiotics for other "mental" conditions, about auto-immune disorders, etc. And she continued to approve renewals of the prescription . . . for the better part of 2 years!

 

In the end, my last conversation with her still came down to her concern that she's "not even convinced that PANDAS exists," but she was willing to prescribe based on the "do no harm" part of her Hippocratic oath. She was encouraging me heavily to take DS to other doctors and specialists, so I knew she was about to reach the end of her willingness to walk this path with us. So we've switched to another pediatrician whom I know has treated another case of PANDAS with antibiotics, though we've yet to turn to him for our own prescription. I guess time will tell. But if need be, I'm not above resorting to tears and pleading again. It's all about DS, and my ego can handle playing the fragile, emotional female for a bit if that's what it takes! I cross my fingers, however, that it won't be necessary.

 

Long way of saying . . . what do you have to lose by giving it a try?! What's he going to do . . . dump your child as a patient because his mother is seeking help for a "rare" disorder?! He might be more receptive than you think!

[PhillyPA]

I drove down to Dr. L's office the night before a snow storm. I knew that the D.C. area would have no clue how to handle a big snow storm. I knew there would be cancellations. I got in. Sometimes just showing up and looking desperate works. If it is bad, go to CHOP's Emergency Room.

[beeskneesmommy]

Did you call scheduling at CHOP during business hours? 215-590-7555. You will get a recording. Do NOT press any buttons on your phone and you will eventually get a receptionist at the Behavioral Health Center where Dr. Elia works. Tell the receptioist that your child has a dx of PANDAS and that you need to be seen as soon as possible. Last Sept., I had an appt. within 3 business days, although I know it has gotten busier over there. The problem is, there are too many kids needing help and too little specialists that are able to help them. That leaves the dilemma of how far each doc can stretch until they are at their limit. I advise you to make an appointment with Dr. E and Dr. T, then go to the 1st appt. available. If you are satisfied, cancel with the other doc. If you are not satisfied, go to the other doc. However, It would be really prudent to make an appointmenmt now, as the wait can be long to get in. One thing is for sure. If you do not make any appointments, you will not see any doctors.

[beeskneesmommy]

I drove down to Dr. L's office the night before a snow storm. I knew that the D.C. area would have no clue how to handle a big snow storm. I knew there would be cancellations. I got in. Sometimes just showing up and looking desperate works. If it is bad, go to CHOP's Emergency Room.

I would be careful about going to CHOP ER. You may be seen by an ER doc on rotation that may not have any expertise re: PANDAS. This is not a route thru the back door to see Dr. Elia or any other PANDAS specialist at CHOP (of which, I suspect, there are none because I think Dr. E is the go to lady).

[JAG10]

I thought Dr. T and Dr. E were working together now, particularly for PEX? Perhaps, Dr. T can get you in with Dr. Elia sooner. It takes months to get into CHOP; 6 months for my dd in 2009 and she was considered a second opinion, not an initial evaluation which can take up to 12 months. THey will send you a load of paperwork which will take some time to wade through. Often, they don't schedule the appointment until all the documents are received. The irony being they will tell you how treatment is most successful the closer to initial onset.....

 

My dd was seen there in Oct, 2009. In August 09, we took her to CHOP's emergency room as she was picking her skin to ulceration. Our pediatrician suggested we go to CHOP's ER in hopes that they could get Elia to bump up her appointment date. No such luck. They dc'd her telling us she's not a threat to herself even though her behavior was "technically self-injurous".....technically, huh?

 

I argee with the above recommendations; work all angles immediately. Dr. T's office is a two-hour drive from Philadelphia. If you email him your circumstances and about the length of time to get into CHOP, he will likely see you rather quickly. Take whatever he can offer you, whenever he can offer it, just like Philly said. Feb. 2010, he called me at 8:15 in the am as he had a cancellation at 11am. I had just dropped my dd off at school and turned right around and picked her up again. Do what you've got to do when you've got to do it!

[PhillyPA]

Feb 2010- must have been the same snow storm JAG. That's when we got our canceled appointment.

 

Listen to Beesknees and Jag10 because I have no experience with the ER. My line of thinking is that if your child is really really bad. Personality change, not sleeping, sudden onset, loss of language- something like that I would suspect that they would admit. They would want to check for seizures or encephalitis. As a matter of fact, I would assume if you said to the ER that your child has had a sudden onset personality change - they would have to admit. That is serious and an immediate cause for investigation. But please - don't come back and yell at me when you have waited 6 hours in the ER and they tell you to go home( ha, ha).

[Baylor]

Thanks. Tonight my dh finally popped.. Annoyed that they are too swamped to see him right now. So we are going to the PED tomorrow night. Dr T emailed me the list of tests and I am taking them to my Ped to see if he will order them for me. I would like to get it done and get dr T the results asap so we can see him and he has all the information he needs to help my son in the best way. It will be a drive so I want to make sure we get all out of it we can. I did find another dr that is at St Chris I may try to call tomorrow too. I am so glad to be able to see Dr T. but I need to be able to see someone close also. Just for my peace of mind..

 

I am not an ER person unless it really warrants it.

It is so good to be able to talk this all out with you all and get some advice from people who have been there and understand.

 

My goal is speed to diagnosis and treatment. However I get that, that is what I am doing.

[Christianmom]

Thanks. Tonight my dh finally popped.. Annoyed that they are too swamped to see him right now. So we are going to the PED tomorrow night. Dr T emailed me the list of tests and I am taking them to my Ped to see if he will order them for me. I would like to get it done and get dr T the results asap so we can see him and he has all the information he needs to help my son in the best way. It will be a drive so I want to make sure we get all out of it we can. I did find another dr that is at St Chris I may try to call tomorrow too. I am so glad to be able to see Dr T. but I need to be able to see someone close also. Just for my peace of mind..

 

I am not an ER person unless it really warrants it.

It is so good to be able to talk this all out with you all and get some advice from people who have been there and understand.

 

My goal is speed to diagnosis and treatment. However I get that, that is what I am doing.

 

You could ask Dr. T to send you actual scripts for the tests (that's what we did). (The PED may be hesitant to order the tests because it will requires a diagnosis code of OCD (or something like that) that they might not feel comfortable giving.) Then you can just take the scripts to your local hospital or lab (like Quest) and have them done. You will want to make sure they participate with your insurance. But your insurance should be OK about an out-of-state (out-of-network) doctor ordering the tests as long as the tests are actually done in-network. With my insurance, all our labwork is considered in-network though Dr. T's fees are out-of-network.

 

I can empathize with the waiting. I thought the labwork would never come back for my son though it was only a week and a half. Praying for you.

[Baylor]

Thanks. Tonight my dh finally popped.. Annoyed that they are too swamped to see him right now. So we are going to the PED tomorrow night. Dr T emailed me the list of tests and I am taking them to my Ped to see if he will order them for me. I would like to get it done and get dr T the results asap so we can see him and he has all the information he needs to help my son in the best way. It will be a drive so I want to make sure we get all out of it we can. I did find another dr that is at St Chris I may try to call tomorrow too. I am so glad to be able to see Dr T. but I need to be able to see someone close also. Just for my peace of mind..

 

I am not an ER person unless it really warrants it.

It is so good to be able to talk this all out with you all and get some advice from people who have been there and understand.

 

My goal is speed to diagnosis and treatment. However I get that, that is what I am doing.

 

You could ask Dr. T to send you actual scripts for the tests (that's what we did). (The PED may be hesitant to order the tests because it will requires a diagnosis code of OCD (or something like that) that they might not feel comfortable giving.) Then you can just take the scripts to your local hospital or lab (like Quest) and have them done. You will want to make sure they participate with your insurance. But your insurance should be OK about an out-of-state (out-of-network) doctor ordering the tests as long as the tests are actually done in-network. With my insurance, all our labwork is considered in-network though Dr. T's fees are out-of-network.

 

I can empathize with the waiting. I thought the labwork would never come back for my son though it was only a week and a half. Praying for you.

 

Thank you! I will take those prayers! I need strength and wisdom here. I did get a hold of the scheduler for Dr E at CHOP and her first appt is after Jan 1. That will not do. I have another message out to Dr Legido at St Chris. I emailed Dr T to see if I can use the scrpit PDF he emailed me or if I need a different one to be able to get tests done. I am going to take it to dr tonight and see if he will order it if not I will do it through DR T tonight or in AM and get them sent to him and PED. and then make appt to see Dr T. This is absolutely frustrating. THank goodness Dr T is so willing to help and get us on track!

PS. Thanks for the information about the tests and insurance. I was not sure how that worked.

Edited September 13, 2011 by Baylor

[dcmom]

Baylor-

 

I am not sure where you live....

 

Dr T is fabulous. He will test for everything, and is willing to try different antibiotics until you find the right one. He will also rx steroids if needed.

 

In addition to him, it is my opinion, that you need one more pandas doc. You should have someone with access to IVIG and/or PEX- if the time ever comes when you need it. Dr L in Bethesda, MD is one option (who we see), or Dr Elia at CHOP.

 

Also, I have found that pandas is the type of disorder that, when it strikes, or worsens, you need to be able to get to a doc quickly- that is easier if you have more than one option.

 

You are on the right track- hang in there- you will feel much better when you are working with a doc.

[Baylor]

Baylor-

 

I am not sure where you live....

 

Dr T is fabulous. He will test for everything, and is willing to try different antibiotics until you find the right one. He will also rx steroids if needed.

 

In addition to him, it is my opinion, that you need one more pandas doc. You should have someone with access to IVIG and/or PEX- if the time ever comes when you need it. Dr L in Bethesda, MD is one option (who we see), or Dr Elia at CHOP.

 

Also, I have found that pandas is the type of disorder that, when it strikes, or worsens, you need to be able to get to a doc quickly- that is easier if you have more than one option.

 

You are on the right track- hang in there- you will feel much better when you are working with a doc.

 

I am glad to know that about DR Elia but apparently getting to see her in an emergency is not an option. Even thought time is important with PANDAS She will not see him til Jan 1. No exceptions. So That does not make me feel good about his care in an urgent situation. Dr T. has been awesome. Emailing me daily checking to see what is going on, Offering help asap as with the Motrin. He said he would do a phone consult but I want him to see my son first and then we can do phone and follow ups after that.

 

My other issue is people thinking my son can control this behavior. They want to discipline him and they still don't get it. I am helping my mom with my 91 yr old grandmom who is not taking her meds and did I mention my dh has MS and I have a 3.5 yr old at home?

Thank goodness for this place. you have all helped and kept me sane and focused!