Details: Two Hour Appointment Today with Dr. Latimer

[nevergiveup]

I am not advocating for these large hospitals, I think none really wanted to be the leader, except CHOP was one of the few that did have a pandas expert Dr E, whom would in very serious cases give PEX, she even published on this, I believe it was Ellen's son actually. But none really pushed for change, we did and Diana did, and our docs did. But then again we truly do not know what Dr E said at the mtg and whether she was a strong advocate for more care or not?

[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.

 

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.

Edited October 1, 2010 by JAG10

[nevergiveup]

Hey I know, my father is a doc in Philly, kept saying let's go to CHOP. Dr L last year said CHOP does treat. I already knew my child would be sent home from there, but my point is in my big city where I live, our prestigious hosp wouldn't even doPEX.So they were one small step ahead of others, somewhat believers I guess. Docs do not know how to determine Which kids have pandas, versus TS versus OCD. If the white paper does not help qualify how to distinguish WHO has this disease, I am afraid we will all be in the same situation we are in now, trying to convince docs our kid does Have pandas.

[peglem]

Geez, I find myself agreeing with everybody here! I think there are people getting treatment when they don't know what they are dealing with yet and the doctor's put the pieces together. (and don't necessarily call it PANDAS) I certainly understand why a doctor would not want to be known as a PANDAS doctor, only to have their practice overrun with patients whose parents have self diagnosed and and continually second guess treatment according to what they have heard on line. I'm not trying to disparage anybody- its just when we're living in this h3ll and cannot get answers anywhere but the internet, mostly from other parents, we get a little pushy sometimes, because we so desperately need our children to get well.

 

But, I also think there is a flip side to the "severe enough" to get treatment category, and that's the "too severe" to get treatment category. That seems to be where my daughter is, and she is only getting treatment because her pediatrician and I pushed so hard for her. Right now, her pediatrician is getting pushed back and second guessing some things and I'm confused as to what is exactly going on. Wondering if things would be going better now w/o the PANDAS dx. I think for sure misdiagnosis of a psychiatric/behavioral disorder really puts you in a bad place. Our last appointment with my daughter's psychiatrist (when my daughter was doing MUCH better than she is now, due to medical treatment), the psychiatrist was very interested that she got better w/ medical treatment and stated that psychiatry deals with symptoms and they seldom know the underlying cause.(I'd venture to say they seldom look for one, either, but that's often true in other medical disciplines as well). So, I'm not even sure that a psychiatric "diagnosis" is a misdiagnosis, as much as it is just a descriptor of how the disease is manifested. The problem is that the medical community accepts psychiatric "diagnosis" as the final word.

[JAG10]

Hey I know, my father is a doc in Philly, kept saying let's go to CHOP. Dr L last year said CHOP does treat. I already knew my child would be sent home from there, but my point is in my big city where I live, our prestigious hosp wouldn't even doPEX.So they were one small step ahead of others, somewhat believers I guess. Docs do not know how to determine Which kids have pandas, versus TS versus OCD. If the white paper does not help qualify how to distinguish WHO has this disease, I am afraid we will all be in the same situation we are in now, trying to convince docs our kid does Have pandas.

 

It's good fortune to have dad to write you scripts when you need them! I'll take that deal! My mom is 70 and I keep begging her to date the urologist that's been hot on her heels for years so I have a back up if need be!!!

 

I guess what I'm saying is this....when you have a "pandas expert" at the big city hospital, everything stops where she stops AND SHE'S VERY, VERY CONSERVATIVE. If nobody claimed to be a published pandas expert, perhaps we parents would have better luck getting some docs of any stripe or color to become educated, measured risk takers for the sake of our children's sanity.

[nevergiveup]

My father has never written a script for my dd. Never. Now for me well yes, he is my doc has been most of my life. My father does help with my dd's tests and talks with her docs but this stuff is way over his expertise. Although, he refers all his ivig patients to Hopkins, immunology. One thing for sure, we have had lots of immune testing done on my dd, and it has helped tremendously in securing doctors whom are willing to help. My dd has multiple autoimmune and immune deficient blood markers.

[wornoutmom]

I've been really hesitant to jump into this discussion due to the tone. But I have been having a strong reaction since the thread started. One of these 4 qualified experts looked me in the face last February (after I spent 1000 to fly there with my son)and told me my son did not have PANDAS and not to waste my money having the Cunningham test done. I got "something is obviously going on, but it's not PANDAS". After years of dealing with this, I got the "it's likely bipolar" or "perhaps seizures" diagnosis. Over the years he has had EVERY symptom of PANDAS, and all of these were dismissed by this expert as seperate coincidences and "some kids with mental illness have their symptoms get worse when they get sick". I was told that PANDAS kids never have good days - only bad days and very bad days. I was referred back to an epilepsy expert in my home state. Flash forward a few months and my son gets a CamKinase score of 168 and a PETscan showing inflammation in the basil ganglia and thalumus. The non-"PANDAS qualified expert" who ordered the scan is surprised, but orders IVIG for my son. HE puts his neck out and treats my son. It's not perfect. I don't feel guided by him . But its something. My point being that even the "experts" are not infallible. They get it wrong sometimes too.

[PhillyPA]

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.

[Fixit]

I've been really hesitant to jump into this discussion due to the tone. But I have been having a strong reaction since the thread started. One of these 4 qualified experts looked me in the face last February (after I spent 1000 to fly there with my son)and told me my son did not have PANDAS and not to waste my money having the Cunningham test done. I got "something is obviously going on, but it's not PANDAS". After years of dealing with this, I got the "it's likely bipolar" or "perhaps seizures" diagnosis. Over the years he has had EVERY symptom of PANDAS, and all of these were dismissed by this expert as seperate coincidences and "some kids with mental illness have their symptoms get worse when they get sick". I was told that PANDAS kids never have good days - only bad days and very bad days. I was referred back to an epilepsy expert in my home state. Flash forward a few months and my son gets a CamKinase score of 168 and a PETscan showing inflammation in the basil ganglia and thalumus. The non-"PANDAS qualified expert" who ordered the scan is surprised, but orders IVIG for my son. HE puts his neck out and treats my son. It's not perfect. I don't feel guided by him . But its something. My point being that even the "experts" are not infallible. They get it wrong sometimes too.

 

Thank you for posting...i think your last statement is so pertinent to this discussion..

and that is something all docs need to realize and more so the docs who deem themselves god on who gets treatment and who doesn't....

and to tell someone they are not severe enough is a joke......

if you get breast cancer and need a mastectomy..you automatically get implants...as it effects self esteem and worth....

can anyone even try to compare breasts, that go under a shirt, to the constant psychological anxiety and outward manifestation that occur with this.....PLEASE...it just makes me so angry...put a turtleneck on and put the money toward these kids...take mine, if it gives more money so people don't have to suffer, probably their whole life because they don't get proper treatment

 

i'll even put out a number and say that of all pan/pit kids..we on this board and those we know, who don't post..probably only represent 1% of the pan/pit population...maybe...that's a 99% failure rate of people being sent down the wrong path..

and they will continue to be miss directed if only looking at strep..or a current infection..and in our case..never looked for an infection or past history..and down right didn't care he had a history of strep and remission, or that i researched it for years..and the fact it may take more than abx or 1 ivig.

they only asked if there was a family history of tics...and therefore pigeon whole and don't think that pan/pits are probalby hereditary, run in families.

the reason that ts and ocd and other conditions are not being healed is they are putting self restrictive parameters..where if they said what if we are limiting it too much ...oh maybe step back and look at the big picture..look at the person as a whole..look at the family as a whole, it would then come together..

and there is always the first person in the family to get a disease and then the new condition is passed down..

and those that get onset as adults we be helped once we take away the P as that is limiting too

 

i was feeling more positive when i replied to tenacity...but now..i realize how daunting this is and i am disgusted at those docs who pick an choose....

 

I am sorry if my thread is incoherent...i am just mad that even with the nih statement ..i am scared it may even get harder to get treatment...maybe we are actually in the sweet spot of this condition where they are willing to try things for our kids...and in 10 years..it will only be if you are X amount severe...and if you tried one protocal and it didn't work per doc X recommendations then you are not treatable...the way that chop is now.....

[ajcire]

Fixit, I know what you meant, I got the point of what you said but "put a turtleneck on and put the money towards our kids".... you are referring to people's mothers, sisters, wives, daughters... something about that breast cancer comparison didn't sit right with me. What might seem trivial to spend money on to you might not to them.

Edited October 1, 2010 by ajcire

[Fixit]

Fixit, I know what you meant, I got the point of what you said but "put a turtleneck on and put the money towards our kids".... you are referring to people's mothers, sisters, wives, daughters.... Yes, these are our children... I get that... my child is my priority but something about that breast cancer comparison didn't sit right with me.

 

it was more of making a point..cancer is TERRIBLE....and they have been through enough..and i can't imagine dealing with that either....

and i want to put a disclaimer..that i am VERYYYYYY pragmatic, practicle....and have always been this way...

and i am a woman and like to look nice, it feels nice....but if i needed a mastectomy...take em!!!!

and if someone can't love me because of that...it is different that no one getting to know you because, you can't get out of the house to actually meet someone or tic to the point of being shunned...it effects you every milisecond

how does this not effect your self esteem...which is what implants are being covered for..(self esteem , woman as a whole)

 

and it was also a jab at how obsessed with looks our society has become......

i have recently decided to stop watching all the reality shows and even chelse lately..funny...but everyone is just mean and constantly commenting on appearances and things that may not be changable even with plastic suregy....

meaness has become the new cool...and its not just"mean girls"anymore...its a constant in our society...

 

anyway...i know what you are getting at...but they are getting looked as a whole person ....and when i heard of this i thought, oh well thats good...but now, i am jealous of breasts implants covered by insurance when i've had to carry my kid because he couldn't walk...and even if not that bad...lets say he can't get a job he's qualified for, but lets say he has face grimmaces that are uncomfortable for others ....so he will not get the job..and that is reality...

that is more realistic than someone not getting a job because they don't have breasts,(and they could wear a padded bra)(and seriously i would give mine up...they do not define me)especially since i can cover it up...

i have vericose veins..i wear long pants mostly, because they hurt and i wore a bandage..so i didn't want people to ask....i had them worked on..they feel a little better..look just as bad..but wear shorts since people know what veins are...the bandage looked like a bad car accident or a prostetic and i was asked questsion(i do not care..it was just easy to do so)...so i just covered up..

 

and who gets to make the decision that a face grimmace is less important than someone who urinates and cant write well or hits their mom when they hear the word"back"..how are breasts more important than that

 

if all these kids would get proper AND CONTINUED help,which is key....i say BREASTS for everyone and make mine bigger and higher

Edited October 1, 2010 by Fixit

[P_Mom]

Nice post, Fixit! I hear ya loud and clear!!!!!!

[EAMom]

I agree with PhillyPA on contacting the doc as it may help others in the future.

 

That said, I know we can't expect even the "experts" to be 100% right 100% of the time. It is a learning curve for everyone including the "big four" (whoever they are!).

 

That is why, I'm so glad you followed your mommy instincts and ran the Cunningham test! While Dr. X may be a PANDAS expert, you are the expert on your child and sometimes that makes all the difference in the world!

Edited October 1, 2010 by EAMom

[EAMom]

 

if all these kids would get proper AND CONTINUED help,which is key....i say BREASTS for everyone and make mine bigger and higher

 

LOL

[ajcire]

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.

Edited October 1, 2010 by ajcire