How long to wait to be seen?

[Baylor]

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?

 

Not yet. Dr T said PANDAS after hearing our story for the last 6 months.. I am sorry, That last post sounded short. I am trying to get all I need to hit Dr tonight and take 3 yr old to grandparents so I can focus on task at hand. I then have back to school night so I anm typing and hitting send before proofing.. Sorry.. I am absolutely going to call her aqain if I get the diagnosis after blood tests. I am sure it is hard when there are so few drs that treat it directly.

[Baylor]

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?

 

Thank you ! I will put them on my growing list!

[Baylor]

Here is something else I am wondering.. Do the symptoms come and go? Or are they constant. He just finished 5 days on Motrin and seems a little better today.. But that can change quickly. Why am I doubting myself? Is that part of it too?

[beeskneesmommy]

Yes, doubting an denial IS a part of it all, at least for us. It's such a crazy disorder in that it DOES come and go, or, "wax and wane". This is actually one of the typical crieria for diagnosis. You may want to check out Dr. K's Site and go thru the criteria. Or, PANDAS Network.

[beeskneesmommy]

And, Baylor, I hate to sound abrupt, but wake up and make an appointment already! You can cancel it if you decide it is unnecessary and it won't cost you a thing! Please don't waste any more time as each week that you wait is another week that you lose in seeing a specialist. We had a horrible, acute episode, lierally overnight last Sept. and had nothing in place for the situation. It was pure fate that we were able to find help immediately, and that is unheard of now, a year later. Best wishes.

[Baylor]

And, Baylor, I hate to sound abrupt, but wake up and make an appointment already! You can cancel it if you decide it is unnecessary and it won't cost you a thing! Please don't waste any more time as each week that you wait is another week that you lose in seeing a specialist. We had a horrible, acute episode, lierally overnight last Sept. and had nothing in place for the situation. It was pure fate that we were able to find help immediately, and that is unheard of now, a year later. Best wishes.

 

You don't sound abrupt.. Lol.. I get it..

 

So I am back from Ped. I was surprised. I talked to him about My son and the changes, I showed him Dr T's information and tests he wanted ordered. He listened and comforted me as I started to blubber. When I mentioned the Dr's I was trying to get in to see at CHOP and St Chris, He said he knew them both and was more comfortable with me seeing someone he knew about. That Dr Elia is the go to person at Chop and he was going to call her and see if he can get My son is ASAP. He is calling her in the AM and also the other dr at St Chris to get him seen. He was willing to listen about the PANDAS and told me that we will see my son get the best care and all he needs. So I am willing to give him a day or so to make this happen.

 

Wouldn't you know it, My son did not tick once there and acted completely like his old self. It kills me. Call the dr because your child has a fever, spots and get there and it is gone.. lol.. Tonight I talked to his teacher at back to school night and she said this last two days ( while on Motrin) he had been good. However when I got home, my son was ticking in spasm form. bursts and then stop and bursts and then stop.

 

I would so like my ped on board because I just love him. He has been amazing with my kids and has gone way beyond many times to get them excellent care. I will not wait long, But he said he knows Dr Elia personally and may be able to get me in sooner so I am going to give him the chance.

 

I asked the Teacher to just let me know on bad days..

 

I feel more at ease now. I feel like I have a plan and a starting point. Thanks so much for all the support and help. I can not tell you how much I appreciate you guys! I will let you know as soon as I get appt and when!

[EAMom]

2 suggestions while you are waiting to see the specialists:

 

--get strep throat cultures (do the 72 hour if the rapid is neg) on everyone (including your son) in the household....checking for carriers and assymptomatic (aside from pandas symptoms) strep (I already mentioned this in another post).

--take videos of tics/movements/behaviors since they tend to wax and wane and as you have seen, may not be there when your son actually sees the doc

[peglem]

 

 

 

 

I don't understand why you are looking specifically for a PANDAS doctor. These doctors get absolutely flooded and then the people who live in the state where they actually practice can't get help. Dr. T is was my "PANDAS doc" when I was kid. I'm sure he would still help me in a crisis as I was basically one of the first kids that got well under his supervision- HOWEVER that being said he never administered the treatments other than the prescription steroid bursts. He did explain the disease on a level that no other doctor could though. Rheumatologists always actually admitted me into the hopsital etc.. If you live near a teaching hospital or big city there is PLENTY of help- it's just a matter of calling sometimes.

 

Also, concerning the autoimmune part- yes it's important but on the surface there is a region of the brain that is over active and that's beginning to be more and more treatable with drugs especially those that control glutamate. You could perhaps obtain relief for your child through this until you can get your appointment.

 

One more thing about "PANDAS docs"- they have their protocol and not everyone is going to fit into it. Sometimes you'd be better off finding a good open minded doctor who's only protocol is what will work----not what has worked in the past for other patients.

Wow! This has so NOT been my experience! I live in Phoenix- a large city and have had a tough time finding help locally. Where are these "good open minded doctor who's only protocol is what will work"? That describes my daughter's pediatrician well, but have yet to find another specialist who has this quality. I'm amazed that you've managed to find doctors to help. I'm very nervous about when she ages out of pediatrics- where will I find another doctor who is willing to help?

[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.

 

 

I don't understand why you are looking specifically for a PANDAS doctor. These doctors get absolutely flooded and then the people who live in the state where they actually practice can't get help. Dr. T is was my "PANDAS doc" when I was kid. I'm sure he would still help me in a crisis as I was basically one of the first kids that got well under his supervision- HOWEVER that being said he never administered the treatments other than the prescription steroid bursts. He did explain the disease on a level that no other doctor could though. Rheumatologists always actually admitted me into the hopsital etc.. If you live near a teaching hospital or big city there is PLENTY of help- it's just a matter of calling sometimes.

 

Also, concerning the autoimmune part- yes it's important but on the surface there is a region of the brain that is over active and that's beginning to be more and more treatable with drugs especially those that control glutamate. You could perhaps obtain relief for your child through this until you can get your appointment.

 

One more thing about "PANDAS docs"- they have their protocol and not everyone is going to fit into it. Sometimes you'd be better off finding a good open minded doctor who's only protocol is what will work----not what has worked in the past for other patients.

 

Because that is what is suspected that he has. I want someone who is schooled in it and not going to take stabs at it.. trying to get the right treatment. It stands to reason that if you suspect something specific then you look for a specialist to treat that one thing.

 

 

On a GREAT UPDATE, My Ped called me just now and said they spoke to Dr Elia and that she is impossible to get a hold of so they were surprised they got her, but after discussing it with her, She told him what blood work needs to be done and we are getting it done today! This is all I wanted, The tests and evaluation... I can not tell you the hope I feel now.