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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.

We were referred to Infectious Disease. I also called to verify that was the correct department because it just didn't seem right. I was told this is where they treat PANDAS. I walked out in tears because I was told that there was nothing to do except get her to a pediatric psychiatrist. This ID doc said that IVIG and Plasmpheresis were very dangerous, and not proven at all for PANDAS. Also antibiotics were not needed either because it was a problem with antibodies not actual infection.

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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.

We were referred to Infectious Disease. I also called to verify that was the correct department because it just didn't seem right. I was told this is where they treat PANDAS. I walked out in tears because I was told that there was nothing to do except get her to a pediatric psychiatrist. This ID doc said that IVIG and Plasmpheresis were very dangerous, and not proven at all for PANDAS. Also antibiotics were not needed either because it was a problem with antibodies not actual infection.

My son was admitted to CHOP for three days. Battery of tests. We saw neurology, Dr. E, Infectious Disease. Neurology department doctor actually said, "This is a case we are just going to shrug our shoulders at". Infectious disease looked at neurology results and said, "I don't know". Dr. E said that maybe he has a non-existent case of childhood schizophrena and he should be started on schizophrenic drugs. I said to her, "So you are telling me that a 5 year old can wake up with schizophrenza after a rash and a headache?" She said something along the lines of it was the only thing they could think of. I refused to give him the medication because it made no sense. In all fairness, this was in 2007. PANDAS was even more unknown...but you would think CHOP would know a little more than most. As a matter of fact, the first thing CHOP thought was PANDAS but they dismissed it because his titers were low.

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My son was admitted to CHOP for three days. Battery of tests. We saw neurology, Dr. E, Infectious Disease. Neurology department doctor actually said, "This is a case we are just going to shrug our shoulders at". Infectious disease looked at neurology results and said, "I don't know". Dr. E said that maybe he has a non-existent case of childhood schizophrena and he should be started on schizophrenic drugs. I said to her, "So you are telling me that a 5 year old can wake up with schizophrenza after a rash and a headache?" She said something along the lines of it was the only thing they could think of. I refused to give him the medication because it made no sense. In all fairness, this was in 2007. PANDAS was even more unknown...but you would think CHOP would know a little more than most. As a matter of fact, the first thing CHOP thought was PANDAS but they dismissed it because his titers were low.

 

it just gets more ridiculous with every post....terrible. i knew of pandas in 03-05 and i'm not a neurologist nor work at one of the "leading"children's hospitals

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Medicine is too fractured, with too few specialists acknowledging that this is the case, and making an effort to make the connections between their own specialty and others. PANDAS is really not purely psychiatry, neurology, or even purely neuropsychiatry. If it had to go in a category, wouldn't it be neuroimmunology? How many pediatric neuroimmunology departments are there out there?...

 

The fact that a patient's illness doesn't fit tidily within a particular doctor's or department's area of specialization, is not a valid reason to send him/her along, claiming it's a matter to be dealt with by some other hopelessly narrow specialty, or claiming there couldn't possibly be anything "organically" wrong (why? -- because it's not in your trusty medical handbook or because you didn't see it yesterday?)! What on earth ever happened to intellectual humility and curiosity? Where are the scientific minds?!...

 

Tenacity

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A lot of painful issues have been spoken of in this thread. There is clearly a battle going on within the medical community that is way bigger than any of us. Yet, our sick children are counting on us to march into the fray and "secure a cure." So, after every skirmish, unexpected ambush, and battle, each worn out "parent-soldier" returns to their "camp" and posts their latest findings on this forum.

 

I have found help on this forum from some of the most unexpected posts. I have learned about things I never knew mattered - and it has helped my son enormously. It is the willingness of the parents on this forum to share what helps that makes it a reliable source of support.

 

When it comes to new or complicated illnesses sometimes doctors take a stand that is political not medical. Other times both doctors and nurses fall back on scientific platitude to "excuse themselves" from cases that they are unable to handle. Sometimes good medical care is set as policy by a group in order to insulate any one physician from legal liability. Sometimes the insurance industry drives and defines care. Research dollars can also define the limits of care.

 

At the NIH meeting last June, one doctor stood up and told everyone there, "Define this disease as narrowly as you want to in your research studies but not here in this white paper. Insurance companies will use the guidelines we set here to determine which claims will be paid and which will be denied." This is the fight. This battle is out of our reach and that is terrifying because we are all effected by the eventual outcome.

 

The best thing we can do is share what we know that might help another parent. There is always something we can do for our PANDAS kids. We are the PANDAS brigade. ;)

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Medicine is too fractured, with too few specialists acknowledging that this is the case, and making an effort to make the connections between their own specialty and others. PANDAS is really not purely psychiatry, neurology, or even purely neuropsychiatry. If it had to go in a category, wouldn't it be neuroimmunology? How many pediatric neuroimmunology departments are there out there?...

 

The fact that a patient's illness doesn't fit tidily within a particular doctor's or department's area of specialization, is not a valid reason to send him/her along, claiming it's a matter to be dealt with by some other hopelessly narrow specialty, or claiming there couldn't possibly be anything "organically" wrong (why? -- because it's not in your trusty medical handbook or because you didn't see it yesterday?)! What on earth ever happened to intellectual humility and curiosity? Where are the scientific minds?!...

 

Tenacity

Yes, this specialization is a blessing and a curse. PANDAS has, for the most part, a psychiatric presentation, an immunologic cause, and a neurologic treatment (if PEX is considered the definitive treatment). These components set up psychiatrists to fail as they insist on using what they know. It also results in fragmented care between the immunologists and the neurologists who have different skill sets and offer different treatment options (IVIG and PEX). The most disadvantaged in this scenario are the pediatricians who see the symptoms but have no final voice when it comes to the diagnosis and only a limited range of treatment options. Even the long term antibiotic treatment option puts the pediatrician at risk of criticism from peers. Until PANDAS becomes an "officially recognized" diagnosis (and perhaps with a name that is not associated with controversy) this is the mess we must wade through to find help for our kids. Awful.

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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.

 

Because with CHOP's prestigious reputation, you can't get anybody in the area to do anything CHOP won't do. It's getting to the point where nobody will treat kids w/o CHOP's blessing first. No abx, no steroids, just psych meds. And when they say severe, they mean hospitalization, overnight for a length of time. My dd picking her skin to the point of ulceration, scars and skin graphs didn't cut it, Taking her to the ER on several occasions didn't count.

 

CHOP deserves kudos in many areas of medicine, but NOT THIS ONE!!!! Many of us who live in this area have the same story. We either drive to MD or NJ or CT or fly to Chicago. The one guy treating at St. Christopher's can't decide if he's going to be bullied by CHOP or not.

 

So, CHOP won'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 the stance that CHOP's treatment of PANDAS kids (tic meds/SSRI's) 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.)

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I completely agree with the NURSES statements! One thing about this illness is why did it became such a taboo? Swedo studies looked promising, cunningham studies were so helpful, the political backlash from Hopkins and Kurlan, and others was overwhelming. Why, did Hopkins try so hard to discredit this illness. Why didn't the TS national foundation invest in more studies, the initial study was so promising.

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I'm going to hazard a guess for their reluctance - we have long been facing the prospect of microbes with increasing antibiotic resistance (many say most likely due to the regular use of it in livestock to fatten them up faster) & it is now reaching the point where we have close to a dozen bugs that we can no longer fight with abx.

 

While I agree that it is scary to think we may be returning to the days when death is not so rare anymore, I look at the h3ll my ds18 is going thru (& that we are enduring with him) & the benefit-risk ratio comes down strongly on his/our side! This ain't livin'.

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