Fixit

yes excitement does flare things... maybe just take her for casual swims...and moderate swimming techniques to keep her ready for when she can handle the competitions better.... May the roads rise to me you on this journey....Good thoughts coming your way on FRIday!!!

I might be going to see doc L and doc B soon....i understand he is very good.... and too mee there are not enough docs and might have a different prespective as we are all still learning... Can i ask ...did you do pex with doc L or just abx???

I have another question... is there concern of rebound effect like there is with a burst???

Thanks for posting..i love hearing it... PS i do have to watch for yeast though... so many years. with abx and no probiotics or anitfungals... we are still recovering a little from that....

I wanted to bump this... i've postponed it before...but may start it tomorrow... has anyone had a longer lasting effect than a couple of weeks... like 25-50% long term inprovement

I would call now...to see if it is there...if not..maybe you can fax the rest>>>>

Good job on being persistant..and convincing your mom to go and doing all the leg work... It will also be good to have another set of ears ..no matter what doctor you go to...

HI Chemar... just a thought ...in regards to you dh reaction to steriods and your son's to flagyl... as i understand more and read and read and fester.... could it be that both trigger a yeast or overgrowth????.. now i know to put ds on anti fungals and probitotics, when doing steroids or abx... Not that you will ever know, just throwing it out there...

I tried reading....and i'm not sure if i get what you are stating... Just that you had a skin infection and it trigger psoriaisis Or that yeast and Fungus can trigger a pandas reaction.... Thanks kim

That was well done....i think dcom or someone wrote something abot a month or 2 ago that was good too... and to add if you didn't get part of it is...even if the infectioon or trigger is cleared...the body hasn't stopped fighting as in my ds...when he was infected w/ strep and we cleared it ...he would completely heal.. but now...maybe too many infections coupled with purberty...his system just wont stop....i believe we have cleared all infections...trying a couple more things... NOw we have to get the inflammation down.... doc t likens it to an asthma attack..the body needs help in slowing down...

my ds as well has horrible seasonal allergies...... do you have any concerns with zyrtec and benedryl...... i would like to do both but have been told several times not too....

So she's dealt with pandas and has treated such kids???? Does she ever treat with ivig, pex,phersis? Is she open to following protocals of doc k,L or others??? Thanks for sharing....

i've also sent this to my dan doc and posted in doc t 's site to see if he has any thoughts... Thanks Again!!!

Sorry to hear you were denied. Keep fighting. So many emotions we deal with on a daliy basis. It is tough. I am not positive but I think it was auto immune deficiency and encephalitis. My doctor also wrote a letter to the insurance company stating it was medically necessary. Coram health also pulled strings. We are having the procedure done in NM and our doctor is in Ca. Where do you live? There is a Coram pretty close to us..... the coordinator seemed like he would help...he called the ins and said he needed a local doc to order...WE are in the valley of non-believers(with the not so secret eyeroll greeting)...ATlanta GA

Great Post..thank you!!

i just rejected for ins...and even though i wasn't expecting approval, i am upset... and if i got approval, i know i would feel exactly like you do.!!! PS...what did you get approval based on????

What a Wonderful Story...for 2 kids!!! it is also hopefull in the aspect it wasn't smooth...needed to be managed but you made it!!!!!! And why not hope for a cure...i would say if you make it a full year...i would sttill be very caustious...but if you can make it 2 years..... i would be extremely HOpefule and confident... THANK YOu for not just going on and living a happy life and leaving us behind w/o this GREAT information!!!!

what is that/this? It would be "carrying" the streptococcus pneumonia pathogen in your cells, without exhibiting an immune reaction that would demonstrate infection- like strep A carriers, but with a different pathogen. so it is in the body.... would this be considered bad or good... does it mean that you can't mount a response???

what is that/this?

Well Done!!!!! Concise..Hopefull...Lovely!!!!!!

Does s thermophilis adhere (colonize)? If antibodies do recognize it, what happens in a gut devoid of s thermophilis? Could this a problem with the ability to break down casein? so are you saying that, the lack of s.thermo in the gut causes the inability to break down casein...? or are you saying because s.thermo is used in the dairy process..we are getting s.thermo that way..and the body can't get rid of it? are you saying that there isn't s.thermo in the body at all naturally? Can you translate your thought, i can't get my head around it.... would that be a reason why ds came up slightly allergic to casein?

I understand...especially if this is your first child....and you see other kids just towing the line..... i grew up with strict decipline and i am firm also.....and....even though ,..God granted me the wisdom,...as i watched this child..to realize...he cant' control it....and i would try to explain that to others....and they would say why are you letting this or that go....and i reply ...he Can't control...it. And even though i was able to see what others coudln't......I WOULD LOOSE IT!!!..it is trying on a no nonsense personality.... Now you know more and do better...and you are getting your sons health back when i think of all the time i have not been there to love him, and my other boys...and sit here focused on this!!!!! But i console myself with....i will sacrifice this time,,and i believe they know i love them...for finding the path to a healthy young man...and a lifetime of health HOw old is your boy???

That is great news......its the little things...as parents we keep these under a microscope...so i am sure something is happening... HOw long ago did you do ivig....?? and what was the abx dose till you upped it last week? thanks for sharing!!!

This is a good place to come and vent....who but all of us can actually relate in the so many manifestations of problems and varities of sadness.... it's not just an info board.... it's emotional support too.... sorry we all have to be here.... and thanks to all who participate....

great find and thanks for taking time to post all these things add up...