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New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBookOur helpful book is a 37-page primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need. Learn more

 


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13 doctors 13 opinions


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7 replies to this topic

#1 wornoutmom

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Posted 08 March 2010 - 03:37 PM

Feeling a little discouraged and overwhelmed today. Started thinking back to Oct. when I started this renewed PANDAS investigation. Here's the rub:

Ped 1: Sinus infection - go see allergist
Psych 1: PANDAS - you need to see a specialist - I can only prescribe psych meds
Specialist 1 (email) - PANDAS - you need IVIG yesterday
Ped 2: No sinus infection - oops, xray shows there is, you were right - see allergist
Allergist: no allergies, no immunodeficiencies - see ENT
Specialist 2 (phone consult) - not PANDAS - see an immunologist as to why he's sick so often
Psych 2: maybe PANDAS, but that's just a theory anyway - try new psych med
Ped 3: Sinus infection is cleared, sorry he's getting sick so often, he may just be unlucky
ENT: Chronic sinus infection - lets do surgery!
Specialist 3: no, not PANDAS, maybe seizures?
Specialist 4 (phone consult): yes, PANDAS - lets treat for Myco P (though we're not sure he has an active infection)
Specialist 5: not seizures, lets do PET scan, but only do IVIG if its positive
Specialist 6 (phone consult): sounds like PANDAS and chronic sinus reinfection from family. need to treat all of you but dont do surgery.


Do you see how a person might go a bit nuts from all this?! All these doctors and all these different opinions. I feel like I'm spinning in circles. I have daydreams of an inpatient hospital I can take my son to, where I can check him in and stay with him (unlike the psych ward) while the developmental pediatrician, the nutritionist, the neurologist, the immunologist, the ENT, the infectious disease doc,the lyme specialist, the psychiatrist, the ERP therapist all take their turns evaluating my son and running their various tests. Then they meet in one big room together and hash it out, and come back to me with ONE diagnosis, ONE treatment plan. And then he stays there while the treatment is done so THEY can observe if their treatment is working, and rehash it together if it is not. No questions of who to trust, and who not to. No dead ends. (oh, and of course this fantasy hospital will be in Miami and have a luxury condo for the parents to hang out in next door while their child is treated, and daily massages to ease our stress will be matter of fact included in this hospital program that is, of course, fully covered by insurance) OK - now I really am dreaming. It just shouldn't be this hard...


#2 dcmom

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Posted 08 March 2010 - 03:50 PM

I feel for you- as I am on the edge as well. In fact, I am supposed to be taking a break from the forum- but haven't started yet :)

I think you have to go with your gut. What, down deep, do you believe? Then go to the doc that agrees with you, and pursue that course to the end.

While at the same time, keeping an open mind.

In other words- you have to do the impossible.

If you think it is pandas- do you remember a time when your kid was not like this? Were there strep or illness triggers? You have had it suggested by a couple docs. If you think it is pandas- then maybe you need to get to Dr K. Do IVIG. Hope it works.

I think Dr L didn't think it was pandas. Why was that? Do you agree? Did you pursue her suggestions?

I am sorry- I am feeling wornout these days too.

#3 WornOutDad

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Posted 08 March 2010 - 03:52 PM

Going nuts is probably underestimated. I'd only change one thing, the fantasy hospital should be on an island like the old fantasy island TV show. How about Hawaii!!!!!!!!!!!!!!!!! :)

#4 Fixit

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Posted 08 March 2010 - 03:55 PM

Do you see how a person might go a bit nuts from all this?! All these doctors and all these different opinions. I feel like I'm spinning in circles. I have daydreams of an inpatient hospital I can take my son to, where I can check him in and stay with him (unlike the psych ward) while the developmental pediatrician, the nutritionist, the neurologist, the immunologist, the ENT, the infectious disease doc,the lyme specialist, the psychiatrist, the ERP therapist all take their turns evaluating my son and running their various tests. Then they meet in one big room together and hash it out, and come back to me with ONE diagnosis, ONE treatment plan. And then he stays there while the treatment is done so THEY can observe if their treatment is working, and rehash it together if it is not. No questions of who to trust, and who not to. No dead ends. (oh, and of course this fantasy hospital will be in Miami and have a luxury condo for the parents to hang out in next door while their child is treated, and daily massages to ease our stress will be matter of fact included in this hospital program that is, of course, fully covered by insurance) OK - now I really am dreaming. It just shouldn't be this hard...


I only have 6 doctors i'm working with so far...you're an over achiever.....
Hey..can i go the that place you're designing!!!!

#5 vickie

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Posted 08 March 2010 - 03:58 PM

It just shouldn't be this hard...


No, it shouldn't. You're doing a great job. The both of you are great parents!

#6 reactive

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Posted 08 March 2010 - 05:12 PM

Feeling a little discouraged and overwhelmed today. Started thinking back to Oct. when I started this renewed PANDAS investigation. Here's the rub:

Ped 1: Sinus infection - go see allergist
Psych 1: PANDAS - you need to see a specialist - I can only prescribe psych meds
Specialist 1 (email) - PANDAS - you need IVIG yesterday
Ped 2: No sinus infection - oops, xray shows there is, you were right - see allergist
Allergist: no allergies, no immunodeficiencies - see ENT
Specialist 2 (phone consult) - not PANDAS - see an immunologist as to why he's sick so often
Psych 2: maybe PANDAS, but that's just a theory anyway - try new psych med
Ped 3: Sinus infection is cleared, sorry he's getting sick so often, he may just be unlucky
ENT: Chronic sinus infection - lets do surgery!
Specialist 3: no, not PANDAS, maybe seizures?
Specialist 4 (phone consult): yes, PANDAS - lets treat for Myco P (though we're not sure he has an active infection)
Specialist 5: not seizures, lets do PET scan, but only do IVIG if its positive
Specialist 6 (phone consult): sounds like PANDAS and chronic sinus reinfection from family. need to treat all of you but dont do surgery.


Do you see how a person might go a bit nuts from all this?! All these doctors and all these different opinions. I feel like I'm spinning in circles. I have daydreams of an inpatient hospital I can take my son to, where I can check him in and stay with him (unlike the psych ward) while the developmental pediatrician, the nutritionist, the neurologist, the immunologist, the ENT, the infectious disease doc,the lyme specialist, the psychiatrist, the ERP therapist all take their turns evaluating my son and running their various tests. Then they meet in one big room together and hash it out, and come back to me with ONE diagnosis, ONE treatment plan. And then he stays there while the treatment is done so THEY can observe if their treatment is working, and rehash it together if it is not. No questions of who to trust, and who not to. No dead ends. (oh, and of course this fantasy hospital will be in Miami and have a luxury condo for the parents to hang out in next door while their child is treated, and daily massages to ease our stress will be matter of fact included in this hospital program that is, of course, fully covered by insurance) OK - now I really am dreaming. It just shouldn't be this hard...

This is more of a question: did you do the PET scan? If so, did you get the result yet? :)

#7 GatsMom

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Posted 08 March 2010 - 05:49 PM

Feeling a little discouraged and overwhelmed today. Started thinking back to Oct. when I started this renewed PANDAS investigation. Here's the rub:

Ped 1: Sinus infection - go see allergist
Psych 1: PANDAS - you need to see a specialist - I can only prescribe psych meds
Specialist 1 (email) - PANDAS - you need IVIG yesterday
Ped 2: No sinus infection - oops, xray shows there is, you were right - see allergist
Allergist: no allergies, no immunodeficiencies - see ENT
Specialist 2 (phone consult) - not PANDAS - see an immunologist as to why he's sick so often
Psych 2: maybe PANDAS, but that's just a theory anyway - try new psych med
Ped 3: Sinus infection is cleared, sorry he's getting sick so often, he may just be unlucky
ENT: Chronic sinus infection - lets do surgery!
Specialist 3: no, not PANDAS, maybe seizures?
Specialist 4 (phone consult): yes, PANDAS - lets treat for Myco P (though we're not sure he has an active infection)
Specialist 5: not seizures, lets do PET scan, but only do IVIG if its positive
Specialist 6 (phone consult): sounds like PANDAS and chronic sinus reinfection from family. need to treat all of you but dont do surgery.


Do you see how a person might go a bit nuts from all this?! All these doctors and all these different opinions. I feel like I'm spinning in circles. I have daydreams of an inpatient hospital I can take my son to, where I can check him in and stay with him (unlike the psych ward) while the developmental pediatrician, the nutritionist, the neurologist, the immunologist, the ENT, the infectious disease doc,the lyme specialist, the psychiatrist, the ERP therapist all take their turns evaluating my son and running their various tests. Then they meet in one big room together and hash it out, and come back to me with ONE diagnosis, ONE treatment plan. And then he stays there while the treatment is done so THEY can observe if their treatment is working, and rehash it together if it is not. No questions of who to trust, and who not to. No dead ends. (oh, and of course this fantasy hospital will be in Miami and have a luxury condo for the parents to hang out in next door while their child is treated, and daily massages to ease our stress will be matter of fact included in this hospital program that is, of course, fully covered by insurance) OK - now I really am dreaming. It just shouldn't be this hard...


In the world of oncology, a multidisciplinary think tank like you describe above happens all the time in the hospital I'm affiliated with. It's called a tumor board and all new cases are brought before the board for all to review and comment upon. I happen to be that massage therapist that you also mention who works on patients and families in a tiny oasis inside the hospital. There is every reason to believe that cases like our kids will someday soon be reviewed in such a way, approaching treatment from a variety of angles. There are docs like T & K and the technology exists. We need a few more players for this dream team but I know they will come with the press this condition is starting to receive.

Hang in there, you really are doing a remarkable job!

#8 matis_mom

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Posted 08 March 2010 - 09:51 PM

Wow, you are in a tough place... My approach is to do what works. Has anything helped? How did your child respond to antibiotics and/or steroids (if you've tried them). I guess at the end of the day it is not so important what you call it, as long as you find a treatment that works. And yes, you might have to try something without being 100% sure it's the right thing to do. We did this with our son. I was very hesitant to try steroids, but they did work! And as for antibiotics, it might just be a matter of finding the right one/right dose. I was very frustrated in the beginning with the "try this and see if it works" approach, but unfortunately there is no "one size fits all" treatment or diagnostic tool.

Hope you find a doctor that can make sense out of all this for you, or at least is willing to try...

Isabel




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