We should tell Dr if get another diagnosis.....

[dabel]

I posted this on the Lyme Forum but thought I would put it here too since this is where people are hopping over from....

 

Posted Today, 02:14 PM

I was just thinking today that I hope everyone that is hopping over here from the PANDAS forum, due to Lyme diagnosis, is letting the PANDAS doctor and Cunningham (if they participated in the research study) know that their child has been diagnosed with Lyme. I think it is very important to do this so these other doctors will remove the blinders and rule out other causes of problems for these kids. I know that I would have appreciated Lyme to have been ruled out. If it was checked, or even mentioned, my one son would be 1 1/2 years in to Lyme treatment and we would have gotten him going when he was willing to cooperate versus now where he has slipped so far I can't get him on board - not to mention the money we shelled out on IVIG and the steroids he was given which can make things worse. I know of one doctor that actually told the parents of one of his struggling patients that the Igenex tests were of no clinical significance! OMG! The kid was positive for Lyme, babesia, and bartonella!! This same doctor said that he only knows of two of his patients that had Lyme and the chances were very low for a child to have it. If that is indeed the case, those two children are mine and I know this to not be true. Anyway, I just wanted to encourage everyone to let the doctors know so that maybe the blinders will be removed and the children can get the appropriate treatment sooner. This information is very important to Dr. Cunningham also as they are finding high Camkinase II in the Lyme's kids as well.

 

It might not be a bad idea to let them know that the child is getting better too.

[Tenacity]

A tiny statistic is so easy to dismiss -- until it happens to you -- or your child. Say, something happens to one in a hundred people, even "one in a million." Can anyone even know this for sure? How many people in the entire world might be stricken? And does any of this matter in the least, if you are the one who's stricken? . . .

 

Bad doctors (I know this sounds accusatory and extreme, but this is what I've come to, for better or worse. . .) -- bad doctors are under the mistaken impression that everything revolves around them, their training, their algorithms, their connections. . . . If a terrible germ arrived on Earth in an alien space ship, they'd all say, "Nope! Can't be! My text books don't say anything about this! Neither did my professors! And what's more, I never saw such a thing! . . ." Every doctor worth a bean should know better, but must of the doctors I've encountered DO NOT. Of course, the doctor looking at such things from the optimal vantage point is -- generally -- a generalist, and not a specialist (if not by title, then at least in spirit). It's the person who understands that anything and everything might connect with anything and everything, the person who's so used to surprises that he's come to expect them, the person who knows he doesn't know it all -- that's the kind of doctor we need more of!

 

Tenacity

[amyjoy]

Well said, Tenacity.

I had asked our Kaiser doc at least a year before dr. schweig (not Kaiser) diagnosed DS with PANDAS, to please check for PANDAS. They said that is so rare we don't even check for it.

 

And after going outside of Kaiser for all the testing, and diagnosing, when it was so obvious that DS has had PANDAS for 4 years and not a sudden onset of TS and Asbergers and Anxiety and personality problems, I took all that information back to Kaiser pediatrician, with articles and information. And she said- wow, if this is true, i think i have a couple of other patients with PANDAS as well - but we don't treat that here and there is nothing I can do to help your son. So maybe that's why they don't test for it because if they do, then they have to figure out how to treat it and they can't be bothered. Its much easier for them to keep treating what they already know how to treat.

[kimballot]

I posted this on the Lyme Forum but thought I would put it here too since this is where people are hopping over from....

 

Posted Today, 02:14 PM

I was just thinking today that I hope everyone that is hopping over here from the PANDAS forum, due to Lyme diagnosis, is letting the PANDAS doctor and Cunningham (if they participated in the research study) know that their child has been diagnosed with Lyme. I think it is very important to do this so these other doctors will remove the blinders and rule out other causes of problems for these kids. I know that I would have appreciated Lyme to have been ruled out. If it was checked, or even mentioned, my one son would be 1 1/2 years in to Lyme treatment and we would have gotten him going when he was willing to cooperate versus now where he has slipped so far I can't get him on board - not to mention the money we shelled out on IVIG and the steroids he was given which can make things worse. I know of one doctor that actually told the parents of one of his struggling patients that the Igenex tests were of no clinical significance! OMG! The kid was positive for Lyme, babesia, and bartonella!! This same doctor said that he only knows of two of his patients that had Lyme and the chances were very low for a child to have it. If that is indeed the case, those two children are mine and I know this to not be true. Anyway, I just wanted to encourage everyone to let the doctors know so that maybe the blinders will be removed and the children can get the appropriate treatment sooner. This information is very important to Dr. Cunningham also as they are finding high Camkinase II in the Lyme's kids as well.

 

It might not be a bad idea to let them know that the child is getting better too.

 

Dabel - Thank you for this reminder. I think it is imperative that we all communicate with past doctors to let them know what happened to our kids after they left their care. It is difficult and tedious, but so very needed. Whether your child has lyme, PANDAS, mycoplasma, or any other condition - if you had a chid that was difficult to treat or find answers for - and you are feeling like you have found something that explains your child's symptoms and is helping, please take the time to write your story down and send it to previous doctors who may not be aware of your outcome. I have been thinking about making a standard "This is what happened to my son" letter and nicely sending it to all the folks we've met along the way explaining that I am sending it in the hopes that they will consider this diagnosis if they come across children with similar symptoms in the future.

 

We are all blazing so many trails. It is important for us to make a clear path for those that follow.