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Details: Two Hour Appointment Today with Dr. Latimer


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Gosh you're nice! We consulted with and did ivig with Dr. K. The follow up is the tough though. We are 7 weeks post. Tell Dr L that there lots of reluctant experts... but they don't have medical degrees. They are parents that spend every waking hour doing research and networking with other parents to dig up information so they can make more informed choices regarding their childs care. And tell her it would be nice if teh four esperts could agree on what the proper ivig does is, and how to know when child needs more than one round (and timing of that 2nd or 3rd round).

 

Also, thinking about you and your ex's situation - there are soooo many kids that are misdiagnosed. My nephew has been on ADHD and tourettes meds for years. Got them to do a cunningham's test on him - bingo - high pandas range (186). Those of us that seek out a pandas specialists and get this diagnosis for our children are in the minority, by far. We are taught to listen to the doctors,after all they know more than we do. But what to do when there are hundreds of doctors that misdirect out of ignorance, and even more that turn their nose up at scientific research? (what is this the dark ages?)

 

All I have to say is thank God for the internet. I decided to read everyting and make up my own mind. Trust my own intelligence. Not let someone else's optinion - even if he is a neurologist, deter me from what I logically beleive to be the truth of the matter, as presented in scientific studies, as well as antecdotal summaries of treatment and case studies of what is working. That's why you often see me going on and on about Dr Cunninghams work.

I have to laugh at Dr K's webpage because he has a statement on the pandas "phenotype" -and the mother, has "unusally high intellience, maybe mathematical or computer oriented, or they do something industriuous for work, and may have some OCD tendancies"- you have to be all those things to diagnose your own kid and FIND Dr K in the first place! a rather self fullfilling "phenotype". Think of the thousands of unlucky pandas kids with parents of average intelligence! No, apologies to your daughter are in order. Anybody that gets their kid into see Dr L is an exceptional parent, that has fought the establishment and even family memmbers to get their kid care. Good job dad. I'm telling you that because no one else can possibily know the amount of work and stress it takes to get to the point your at...so no one else is gonna give you the kudos you deserve. Except maybe your child someday...who might thank you sooner than you think becasue she's gonna start felling a whole lot better.

 

So who are the 4? Dr B, Dr K, Dr T, and Dr L? Please tell Dr L to train an intern and make him/her move to Northern California!

 

Thank you again soo much for your kind offer! I've been thinking I need to do more for this cause, and your offer to put up two perfect strangers, one with a known emotional and mental disorder has struck home to me. I'm buying a neighbor a cunninghams test, a small thing - but I'm thinking of running in a race or something to raise money and awareness. I'd like to do it under the new name though. Hopefully that is coming soon!

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When my son finally started eating again, he ate something like 3 donuts a day. But, HE ATE! And without me feeding it to him or without me asking. But am I bad parent because of it? Heck no. Now, he's a 7 year old that eats raw carrots, fruit leather, never drank a drop of soda, and says he should eat healthy food. Obviously, I didn't mess him up.

 

 

Yes, I agree, a PANDAS child, especially when in an exacerbation, should be treated differently. When you live with them, see their suffering, and realize the child you once had is gone and trapped....well, luckily I think most PANDAS parents realize parenting skills need to adapt and treat their children accordingly. Even once they are better, you never really parent them the same way you did pre-PANDAS. You realize how delicate life is, you appreciate them more than ever, and know you can lose them again so quickly. It changes you.

 

Amen. Hat's off to PANDAS parents. Who hasn't cried themselves to sleep over their PANDAS child? I am worried about Blake though with the way others may treat her. I stole a peek at a note book I bought her at a dollar store. She's 12 and a classic pre-teen. She scribbled on one page "I (heart) K" K is the name of a boy in the 8th grade at her school. They next page had a scribbled depiction of a girl with the word "Ugly" and an arrow pointing to her. Blake has anorexia and is a bag of bones.

 

My wife Sarah tells me Blake looks worse than most of the malnourished orphans she volunteered to help in Kyrgyztan four years ago. Her solution is to make Blake sit at her plate until it's clean. (Blake just sits there and quietly sobs.) Her immature teen daughter makes this even harder because Blake gets "special treatment." I react now saying, "we just won't eat with you anymore."

 

Hey, I'd force feed Blake if I had to, but if all she will drink is water because she can't stand flavored drinks then I let her. If all she will eat is chicken nuggets, green beans, and macaroni then I thank the man upstairs she has an appetite at all. I need to get protein into her and if she will eat tacos and chicken I count myself lucky. This is not a normal situation or a normal child. If she were normal, she'd insist on Kool aid or soda pop. PANDAS makes her want to drink only water due to sensory overload. I can't change this no matter how much I want to force her. It's child abuse at some point.

 

I agree that all PANDAS children are different and have to be parented accordingly. This is not science and is instinctive. I do think that there are prevailing social customs in American child rearing that are very bad for PANDAS children. I am willing to be called a bad parent and trust my instincts on this. It's made it hard for me, but I'm not the one suffering. I pray a lot and have gotten a lot of answered prayers.

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Hierge!

 

What an exciting post!

 

Congratulations to Blake, you, and family, on this breakthrough! I wish you all HEALING!...

 

And thanks for the insights into the larger medical breakthrough that seems to be in the works! (So important and so long overdue!)

 

Re. your own particular story: It appears, this time, "it" was "in the father's eyes"...

 

Tenacity

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Gosh you're nice! We consulted with and did ivig with Dr. K. The follow up is the tough though. We are 7 weeks post. Tell Dr L that there lots of reluctant experts... but they don't have medical degrees. They are parents that spend every waking hour doing research and networking with other parents to dig up information so they can make more informed choices regarding their childs care. And tell her it would be nice if teh four esperts could agree on what the proper ivig does is, and how to know when child needs more than one round (and timing of that 2nd or 3rd round).

 

I completely agree!

 

Also, thinking about you and your ex's situation - there are soooo many kids that are misdiagnosed. My nephew has been on ADHD and tourettes meds for years. Got them to do a cunningham's test on him - bingo - high pandas range (186). Those of us that seek out a pandas specialists and get this diagnosis for our children are in the minority, by far. We are taught to listen to the doctors,after all they know more than we do. But what to do when there are hundreds of doctors that misdirect out of ignorance, and even more that turn their nose up at scientific research? (what is this the dark ages?)

 

Yup.

All I have to say is thank God for the internet. I decided to read everyting and make up my own mind. Trust my own intelligence. Not let someone else's optinion - even if he is a neurologist, deter me from what I logically beleive to be the truth of the matter, as presented in scientific studies, as well as antecdotal summaries of treatment and case studies of what is working. That's why you often see me going on and on about Dr Cunninghams work.

I have to laugh at Dr K's webpage because he has a statement on the pandas "phenotype" -and the mother, has "unusally high intellience, maybe mathematical or computer oriented, or they do something industriuous for work, and may have some OCD tendancies"- you have to be all those things to diagnose your own kid and FIND Dr K in the first place! a rather self fullfilling "phenotype". Think of the thousands of unlucky pandas kids with parents of average intelligence! No, apologies to your daughter are in order. Anybody that gets their kid into see Dr L is an exceptional parent, that has fought the establishment and even family memmbers to get their kid care. Good job dad.

 

Yup.

 

 

 

So who are the 4? Dr B, Dr K, Dr T, and Dr L? Please tell Dr L to train an intern and make him/her move to Northern California!

 

Those were my four guesses.

And great idea about the intern. Or, at least Dr. L. could write some sort of "PANDAS for Dummies" guide for our local docs! :wacko:

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Thanks for posting! I am so happy for you and Blake :) . Things are going to get better!

 

I must say, I completely agree with you about not being able to force an anxorexic (or at least a 7-year-old PANDAS anorexic, which is what my dd was)to eat. Things will definitely gget better now that you are treating the PANDAS (it did for us)!

 

So is Sarah your current wife? And your ex-wife went to the appointment with you? Maybe you should bring them both next time. (I assume Blake lives with you and Sarah?)

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I have a question for everyone, Hierge said one of the turncoat doc will be naming the new name or one of the turncoat docs will have the disease named after him? I am confused on the first post. And second, I am confident that the four docs, Dr L is referring to are NOT the four we use here on the forum. Dr L deals with more mainstream docs, remember the Chop docs were at the mtg also and other neurologists accross the country treat pandas, they just aren"t advertised all over this forum, they are researchers. Whatever docs she is refferring to, I am sure they have hospital access to PEX since this is one of her treatments of choice, like the chop docs. She deals with this with steroids, PEX, IVIG, ABX, vitamins, tonsillectomies and she offers mri's, blood work, refers patients to research studies, offers ocd consults from the NIH ocd experts, requires cuningham test, etc...... She would be talking about docs whom have similiar treatment protocols and "get" what this disease is about. Sorry but not our docs, offering a one treatment protocol. Of course this is just specualtion, but when I asked her about "turning back of the pages" she said "What are you talking about, never heard of such a thing?"

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Dr. Latimer explained that PANDAS does not go away after episodic treatment with antibiotics. That was a huge deal for her mom to hear. I knew this all along, but mom was indoctrinated by all the doctors she met over the last four years. She never dug into this as deeply as me. She spent her time trying to "normalize" Blake through bullying. Blake's not allowed to cry in her mom's house or she gets grounded. Well, she's deathly afraid of things and she cries at the drop of a hat. How's bullying in this instance not child abuse? I was accused for years of being a bad parent for treating her like a PANDAS child with compassion. I would hold her until she stopped crying like a small child. Her own mom thought that was coddling. (Including my now wife Sarah who is military.)

 

 

Can you expand on that...

is she saying its a life long maintenance thing..

or is she saying that a pan/pit kid will eventually need a big gun..ivig/pex

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That bit about the yeast is very interesting. I wonder why that is. I spent well over a decade - probably close to 2 decades - on antibiotics and have only had 2 yeast infections that I can recall...and I wasn't even taking probiotics or anything during most of that.

 

just to play devil's advocate...

are you sure???

have you done the spit test in the mornings.....

maybe yeast problem doesn't have to be a full infection..more of the flora being off...

 

myself and other child fine on spit test ...always...

dh and ds..spit test always off...dh is much worse than ds..but still a little

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I would really like to see if we could get Dr. L and maybe Swedo to make a trip to the west coast to do some Grand Rounds, or interactive seminars and discussions of cases at major universities, so that we can get at least Stanford, UCLA, UCSF, and those kinds of places to be centers of PANDAS excellence...or at least build the relationships with east coast docs to become that way. We've had a great experience at UCLA; my kids have been symptom-free with very little blip for several months and Dr. McGhee seems to get PANDAS, but my kids are straightfoward strep+immune deficiency cases, and I don't know if anyone there would know where to go with it, or how to push it through insurance, if they ever got complicated or if they had not been immunodeficient. In any case, our doc at UCLA has been interested and receptive, and if someone came out to UCLA to give a PANDAS seminar, I'm guessing that it would be well-attended by a receptive audience. They could even invite local pediatricians and other docs who were interested.

 

I have to believe the same could be true at Stanford. There are doctors there who have helped people, I think. Heck, I was diagnosed and treated there by Dr. Ketter before PANDAS was even named, and he was fascinated by "the case" (I had called him for a referral, but then he wanted "the case" for himself) - so there's at least one doctor who I think would be open to listening carefully and who would use the information - and he's a department head for adults.

 

Maybe we could raise funds for a little road trip, if the east coast docs are willing? I'd be happy to help work on assessing willingness/interest on the CA side and organizing and scheduling the seminars. I think having good centers in SoCal and NoCal would also be very useful to those in e.g. Oregon, Wash, AZ, Nevada, etc. who could drive out to CA in less than a day. The problem with flying out east for consultations, etc., is that PANDAS can be a moving target, and it's hard to get ongoing treatment on a very regular basis with someone 3000 miles away. It's great to go out for diagnosis and consult, but it's not very practical if you need regular follow-up.

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I mentioned my meeting Beth Maloney. She said that Saving Sammy had a few issues she felt were not accurate regarding PANDAS itself. I didn't fully understand this, but she went into an explanation of the blood brain barrier, antibodies. I will ask her to explain in the future.

 

Hmmm. Maybe partly about how Beth says ASOA is a "test" for PANDAS? Do find out. I'm curious!

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