Details: Two Hour Appointment Today with Dr. Latimer

[Tenacity]

HELP! I can't stop returning to this thread!

 

Yes! -- (to a whole bunch of these comments!)

 

Although I'm always glad to hear that somebody somewhere is getting help, "picking and choosing" who gets treatment, based on policies that are ignorant, prejudiced, and political, is NOT GOOD MEDICINE. The policy of treating Sydenham's chorea and dismissing PANDAS is irresponsible, wrong-headed, and downright dangerous. And I know this not just because of the extensive reading I have done, but because of what I've seen in my own kid. He developed violent chorea after three years of suffering from PANDAS that went misdiagnosed and mistreated as "bipolar disorder." If he'd received the correct diagnosis of PANDAS in the first place, and been properly treated, the disease would not have progressed to the point of transforming into violent chorea. PANDAS and SC are not perfectly discrete conditions. Comparisons with cancer are in some respects quite apt. Post-infectious neuropsychiatric autoimmune disease is a spectrum, and an individual case can become progressively worse over time. So with PANDAS, as with cancer, the sooner you catch it and do something about it, the better the patient's chances of healing.

 

God, I hope that white paper turns out to be on target!...

[P_Mom]

I think what Fixit is trying to say that if Breast implants are covered by insurance for self esteem reasons, our kids treatments should be covered by insurance for quality of life reasons. I don't think she is trying to downplay the seriousness and emotional impact of breat cancer. She makes a valid point. I am the daughter of a two time cancer survivor, my mom...breast and ovarian, so, I know the impact it has (and, we lost some women to ovarian cancer in our family)....if it came down to it...she would hand over her covereage for implants in a heartbeat for my kids sanity and to get the treatment they need.

 

yes, I agree...there are many kids worse off than ours...hands down...but, these kids usually get the insurance coverage they deserve. I think she is just making an insurance comparison, not saying anyone should be denied treatment.

Edited October 1, 2010 by P.Mom

[ajcire]

I get it.. I really do get that there are a ton of things covered that don't make sense to be covered when things of more importance are not.. It was something about the phrasing of it that just hit a nerve I think

 

I think as mothers we would all hand our boobs and our coverage over if it could help our kids. But if insurance would cover a tummytuck for me... well... (that was a joke... I will forgo the tummytuck too

 

 

No worries, it's all good.

[Fixit]

I will politely disagree with you. I am not suggesting that breasts and looks are more important than sick children. I am suggesting that I would never tell someone that the money for their implants due to a mastectomy should have gone toward my child and I'm not jealous that a cancer survivor's implants are covered. Perhaps it was not so much the point you were trying to make as the tone in the turtleneck comment... you know.. so we had to cut your boobs off.. just put on a turtleneck and get over it because my troubles are bigger than yours. If this was the case well.. there are worse people off than my child..if we go on that theory than my child doesn't deserve help like the next kid and I should understand that and just let everyone else have the money to help their more ill child. My problems not that big.

 

i might be coming across as insensitive....(and i come from a family of pragmatics...my mom being the leader)....but i assure you am not...i don't understand why God doesnt direct us and all people in need...

 

and i hope you are not mad at me....i am a feminist...and unfortunately.i think our place in the world has digressed for many reasons...and i hope that my neices don't place their value on their estetics or sexuallity..

and i not saying do harm...and i think it is great that they get implants..i not saying change the insurance

but on a practical scale...my childs problems and potential problems...

as like tenacity have gotten worse because of no one looking out side of "check the box"diagnossis..

are more important

 

and i know you are more upset about my breast comment...and i hope this thread isn't shut down...

it's a good thread...nothing bad going on here...but i feel these kids aaaaannnnndddd adulst who will get this condition(late on set,early onset doens't matter) are bigger problems than not having breasts....

 

and as i was thinking...

i had my leg done before ds last onset...i would have sacrifice the insureance cover for that if i could have applied it my kid or your kid...and i bet...if there are woman who have breast cancer..there are probably alot ..as they are women and the higher species...would probably forgo the coveragae for the implants if they were allowed to forfit it to help and pan/pit kid..if they new about it..

 

i may be going on too long...and not trying to get political...i would not terminate a life and not discontinue care for someone because they are 90 and had a good life...well let them have as much life as there body will give them..

i'm also for woman's choice...

but in real life..if i had to choose between breasts implants(i am not saying not treat the cancer patient..please understand that...life is crucial) and treating a panda kid...if i were the judge..i'd go with pandas..and probably a couple of other conditions too...

 

and i am glad that someone can get full and complete coverage and be whole again...i wish that for everyone....

this may be topic a that may be close to you..and i do not mean to hurt you or anyone else

please don't be mad at me

[wornoutmom]

Wornoutmom, did you send those results to the PANDAS expert that you previously saw? I would. Write that doctor a letter updating him/ her of what happened to your son. I am sure that the doctor would be interested in knowing that information. Then, hopefully in the future when that doctor sees a child with your child's symptoms perhaps a second look will be taken.

 

You would think that Dr would be interested. After getting the PETscan and CamK results, I contacted the dr. I wanted their opinion on the IVIG, given the new information and their original stance that it wasn't PANDAS. I emailed. I called the office nearly every day for a month. I faxed the results to the office. This dr had told me when we left the initial consult that I could contact any time with follow up questions. After a month of trying to get some feedback on this new information, I was told I would have to schedule and pay for a $200 phone consultation. I was told that my new "non-expert" that ran the PETscan and was recommending IVIG was a very good neurologist, and he was now our primary treating physician, and he was just taking a different angle on this. I politely declined to pay the $200 and felt very very snubbed. Interestingly enough, I was contacted by this expert's office in June to provide data on our PANDAS son in preparation for the NIMH meeting. I provided it. Somehow my son has been put into their files as being a PANDAS kid. And yet, he was denied treatment by their office...

[ajcire]

Fixit, I really do understand and agree with the gist of your post. No worries at all and certainly no hurt feelings.

Edited October 1, 2010 by ajcire

[EAMom]

I think what Fixit is trying to say that if Breast implants are covered by insurance for self esteem reasons, our kids treatments should be covered by insurance for quality of life reasons.

 

Or how a doc will have no problems rx'ing long term Azith. to treat Acne (as it should be) but won't rx the same med to a child with PANDAS (b/c it is "dangerous" or "unproven" or not something CHOP would do?). So we treat to prevent Acne scars but won't use the same medication to treat (or prevent) a PANDAS child's mental illness.

Edited October 1, 2010 by EAMom

[EAMom]

Wornoutmom, did you send those results to the PANDAS expert that you previously saw? I would. Write that doctor a letter updating him/ her of what happened to your son. I am sure that the doctor would be interested in knowing that information. Then, hopefully in the future when that doctor sees a child with your child's symptoms perhaps a second look will be taken.

 

You would think that Dr would be interested. After getting the PETscan and CamK results, I contacted the dr. I wanted their opinion on the IVIG, given the new information and their original stance that it wasn't PANDAS. I emailed. I called the office nearly every day for a month. I faxed the results to the office. This dr had told me when we left the initial consult that I could contact any time with follow up questions. After a month of trying to get some feedback on this new information, I was told I would have to schedule and pay for a $200 phone consultation. I was told that my new "non-expert" that ran the PETscan and was recommending IVIG was a very good neurologist, and he was now our primary treating physician, and he was just taking a different angle on this. I politely declined to pay the $200 and felt very very snubbed. Interestingly enough, I was contacted by this expert's office in June to provide data on our PANDAS son in preparation for the NIMH meeting. I provided it. Somehow my son has been put into their files as being a PANDAS kid. And yet, he was denied treatment by their office...

 

This really saddens me. Although part of me wonders if doc X is embarrassed, or otherwise overwhelmed, or didn't actually get/understand the original msg. (since I know others have had problems with contacting Dr. X...does the staff just not convey information?)

 

HUGS!

[ajcire]

I really do understand the injustice with all that. I do get it I think my post was misunderstood to suggest I didn't understand her intention with the post. I did get it.

 

Or how a doc will have no problems rx'ing long term Azith. to treat Acne (as it should be) but won't rx the same med to a child with PANDAS (b/c it is "dangerous" or "unproven" or not something CHOP would do?). So we treat to prevent Acne scars but won't use the same medication to treat (or prevent) a PANDAS child's mental illness.

Edited October 1, 2010 by ajcire

[wornoutmom]

Wornoutmom, did you send those results to the PANDAS expert that you previously saw? I would. Write that doctor a letter updating him/ her of what happened to your son. I am sure that the doctor would be interested in knowing that information. Then, hopefully in the future when that doctor sees a child with your child's symptoms perhaps a second look will be taken.

 

You would think that Dr would be interested. After getting the PETscan and CamK results, I contacted the dr. I wanted their opinion on the IVIG, given the new information and their original stance that it wasn't PANDAS. I emailed. I called the office nearly every day for a month. I faxed the results to the office. This dr had told me when we left the initial consult that I could contact any time with follow up questions. After a month of trying to get some feedback on this new information, I was told I would have to schedule and pay for a $200 phone consultation. I was told that my new "non-expert" that ran the PETscan and was recommending IVIG was a very good neurologist, and he was now our primary treating physician, and he was just taking a different angle on this. I politely declined to pay the $200 and felt very very snubbed. Interestingly enough, I was contacted by this expert's office in June to provide data on our PANDAS son in preparation for the NIMH meeting. I provided it. Somehow my son has been put into their files as being a PANDAS kid. And yet, he was denied treatment by their office...

 

This really saddens me. Although part of me wonders if doc X is embarrassed, or otherwise overwhelmed, or didn't actually get/understand the original msg. (since I know others have had problems with contacting Dr. X...does the staff just not convey information?)

 

HUGS!

 

No, Dr X got the message. The first inquiry I made resulted in a very timely request for me to fax the results, and then DrX would be happy to talk with me. But then none of the my further inquiries were returned. I can't speak to what the motivation was. The staff seemed frustrated for me. After a month of this, the office worker finally just got out of her chair and walked back to the doctor's office to interrupt and force DrX to give me some response. I know this Dr has helped a lot of children. Unfortunately, for reasons I don't understand, mine wasn't one of them.

[EAMom]

[EAMom]

Eamom, Chop treats with ssri and anti tic meds and in severe sudden onset with pex. No games. Why would you talk that way about them, they are no different than any other doc. Your doc doesn't treat every child with ivig does he??? Is he inhumane? CHOP does not do ivig for pandas but does for a SC diagnosis. Why are you so critical of this type of treatment. Its better than in most places where you get nothing.

 

Wait, so they don't even treat with long term antibiotics?

 

Do they look for underlying infection including non-strep illnesses such as tick borne diseases and mycoplasma, or sinus infections or cysts? Do they do throat cultures and check family members to make sure they're not carriers? Do they check the immune status of these kids?

 

Considering how many PANDAS kids have failed to respond (or had adverse effects, or just continued to spiral downward while well-meaining parents are thinking they are doing "all that can be done") from SSRI's and other psych. drugs, I would disagree with your stance that CHOP's treatment of PANDAS kids is "better than nothing".

 

Antibiotics (+/- a course of steroids) would be "better than nothing". PEX/IVIG would be even better.

 

(Oh, and I'm glad CHOP is treating SC cases, that is great. They should.)

Edited October 1, 2010 by EAMom

[P_Mom]

WornoutMom....perhaps it was bad timing??

[norcalmom]

or, one doctor trying to do too much. when we consulted with our last dr. for ivig, he said, yes we needed it, he but didn't want to do it because he was so busy, and doing the ivig was not where his time was best spent.. He wanted us to shake the local trees to see if we could find someone local to do the ivig. We are half way cross the country from him, so we wanted to find someone closer too. He said he would consult if we could find someone locally. We couldn't find anyone. so, if it is the same doctor, I know he would be more than happy to have some other doctors take some of his patients..which is why he probably felt you were being taken care of, but still recognized that you were a pandas case and belonged in that file. We are also having trouble with follow up - we are so far away, not a high priority, when kids is crisis are banging on the door.

 

no one is infallible. Drs can make errors, and it is a difficult diagnosis. I'm sorry you had to go through that. This disease is tough enough as it is.

[JAG10]

Eamom, Chop treats with ssri and anti tic meds and in severe sudden onset with pex. No games. Why would you talk that way about them, they are no different than any other doc. Your doc doesn't treat every child with ivig does he??? Is he inhumane? CHOP does not do ivig for pandas but does for a SC diagnosis. Why are you so critical of this type of treatment. Its better than in most places where you get nothing.

 

Wait, so they don't even treat with long term antibiotics?

 

Do they look for underlying infection including non-strep illnesses such as tick borne diseases and mycoplasma, or sinus infections or cysts? Do they do throat cultures and check family members to make sure they're not carriers? Do they check the immune status of these kids?

 

Considering how many PANDAS kids have failed to respond (or had adverse effects, or just continued to spiral downward while well-meaining parents are thinking they are doing "all that can be done") from SSRI's and other psych. drugs, I would disagree with your stance that CHOP's treatment of PANDAS kids is "better than nothing".

 

Antibiotics (+/- a course of steroids) would be "better than nothing". PEX/IVIG would be even better.

 

(Oh, and I'm glad CHOP is treating SC cases, that is great. They should.)

 

When we received our blood work back, Dr. E did not want to prescribe abx. SHe wanted another trial of SSRIs....this would have been like the 10th! She wouldn't consider anything else until we tried CBT across the street at U of Penn. I know there are many who rave about CBT and ERP, my kid was in NO WAY cognitively able to reap benefit from these therapies, she was a mess! After two more weeks passed and dd was getting worse on the ssri, Dr. E's fellow had pity on us and prescribed 250mg Amoxicillin 3x/daily for 10 days. I took the script, but had already made an appointment to see Dr. T who quickly switched her to zith. No, CHOP is not in the practice of prescribing abx, their medical management clinic which Dr. E runs prescribes psych meds.

 

Can someone comment on whether Dr. E was the only CHOP doc there??? Was there a different department...neuro? anybody else?? I certainly hope so.