Fixit

That is great news!!! and i agree with you completely!!!! i hope your ds is following right along in the healing!?

Peglem....so awesome.... I've only read your posts on this thread!!!! Do you think it was because you did it a week early!??!?!?!. And you are indeed a very good MOM!!!

All i have are cyber hugs()...I can relate as both of my parents are gone and sure would like just talk with them for just 5 minutes...And having a sick child trumps it all... You can vent any time.

Well it sounds wonderful....like a Hallmark Holiday Special... 2boys with misteriuous illness...receive crucial medical intervention...on the road to recovery as their lives return to normal they have a managable er visit, but their brotherhood comes alive with self-depricating banter.....!!! I'm glad the docs replied so rapidly and that your boy will be well...and i am glad you are seeing the healing so quick!!!

What a wonderful thing to hear!!!! I am so happy for you and your little boy! Thank you for sharing the good news!!!!

Bravo..Pandas mom!!!

yes... ok i will call her right now!! should only be 5-6 hours at most..

If not...i would be willing to travel..nothing new...the sooner i can get in the better though...

thanks pacific... well i am an origianl jersey girl...but nothing like those seen on TV...Lord help me!! More princeton type with a little of the buck stops here, or so i imagine.. dh hails from VA, we lived in pa 4 years of ds life and we FREquent the north, alot of family up there!!

mom that is great!!!! being that your children are immune deficient..is this something they will have to do indefinitley ,,,till purberty...2 years...any frame on that?

Also as a nation we are vitamin d defecient...most work indoors, go to school, watch tv, xbox....and then sunscreen(eek) look into adding or upping d3...you can do a blood test...but in gerneral adults need an extra 1000 ius... my ds 10 is on 2000iu and i did see a smidge of improvement..his always tests low...even in summer. maybe get test done just to see base line...even if normal and extra 500iu is probably still helpful... i think they are raising the requirements on it???

yes..thank you...i want to take the test as soon as it comes in... he took second azitht this moringing.... i will try to call the llmd i spoke to before to see if she has a dosage for the other 2 abx.... what dosage was used for your ds..what did he weigh... do you have llmd to suggest.. Ozi...thanks for the support...it is a new day...hitting the research and calling docs as soon as the opening bell .. 9am for docs office...9:30 for the stock market...

thanks ozimom..didn't want to take over aireals vent time....(i don't want to get into me right now, but i did post over at lyme board, a thread i started, as i am just trying to make final anaylis on whether or not ds has lymes....) i think ds has slipped almost completely do to many things but final straw being ds7 strep...(my brother called, today..he has a small c=class rv..he said i can get one too and we'll carvan...i am toast, i can't remember not yelling... i now think ds3 has another ear ache...says he has owey...and i am sure a tornado and 6 robbers have been in our house!!!

LLmd didn't seem too concerned on the phone..and when i mentioned pandas she said..yes that is quite the hot topic...but in her defense she had a patient just walk in.... i called the dan office again..he was out...so they gave me email....i asked if i could start azith... he said yes...so i thought i'd try to wait it out till package came...as igenex lady said instructions would be in box but.....i am soooo sad....my boy has started full body movements, has to stop when he walks..when he walks he has to jump and kick himself..flap arms, screech........a few seconds later...10 whipping head nods, snort, nod....the list goes on.... i had to start zith tonight...and give next dose in morning... as he sits there sort of...and dh and i dispute the condition....i said ds...maybe we should just put you in a bubble...and he asked what that was...explained..he said no...(this is all light hearted)...i said you could play x-box as much as you want...he seemed intrigued.......he asked what about school...i said no school..you'll be in a bubble...he said....No Way...not doing it!!!!!! Can their preciousness..make you feel even worse about their conditoin.....!!! He loves school....the kids have never been mean...YET!! i know couple times when some have asked him stop doing what he is doing...the teachers have very dicreetly spoken with the childre in the hallway... we are pretty close to our worst point...i think i will know soon if we are there...this slide has been coming...and the last week has been dramatic i am sorry to lay this on all of you.....i am sorry.....why can't i figure this out....why am i not as smart as all of you? ok..got to regroup.....done crying did i screw up the test then...should i call a different lymd doc tomorrow...i live in GA..this one is in NC ...is there one you recommend...? i'll travel anywhere...but i don't want to wait...go to do this now... also retyping this,,,just lost it... i put ds on list for pex 4-5 weeks ago...then 2 weeks later he seemed to making an incredible recovery...so put on hold.. called back about 2 weeks ago to put back on list..he is 6th...now we are looking at Jan....i don't have any kind words for myself right now....i should have just signed up in aug when i was there.....but i thought we were so close to remission(via 28 day taper),that we can do this...i i haven't been following over here on lyme board....has it been decided or somewhat confirmed that you can get lymes other than in utero or tick bite....i really don't think i have it..and i don't think ds does, but i am not excluding that we are northerns originally... can it be passed in sperm...i would be more likely to beleive that dh has it... has anyone come up with lymes that didn't get it in utero or tick bite.....is it possible to get from someone else via sharing food or something like that....if that is possible and ds has weaken systemthan then i do think ds could have it

aireal...i am mirroring your foot steps this week...i completely simpathize.... i can't even post about it.... I just want you to know i get it and it s*&(&s!

i don't know if you talked about this topic or not... and i want to clear all hurdles before i procede with a big gun..that is why i had tonsils out in sept... but we did igenex in april this year..41+ 39ind.... per all the panda docs he does not have lymes...i don't think he does either... i did call a lyme doc acouple of weeks ago...she said 39 could be something but wasn't jumping gun... she is in nc...so i she said to see if i could invesitgate further... so spoke with dan doc..last wednesday..and was going to order dot blot. also saw ent same day to folloup on his TA..had doc check him out well becasue it seemed like we were ramping... to my shagrin..i know this seems odd to say..he checks out fine..(i wanted something specific to fight) thurs ds7 comes off the bus crying his throat hurst...go to ped..he has strep...so that might explain ds10 i've been giving ds ole...but with this strep exposure and ramping i'm ready to back to azith ..at least for a while per prior conversation the test requires azith and daily urine tests....so i'm trying to hold off but i called doc tuesday to see where it was..said on it's way..called 2 hours ago..had to reorder, or it was back ordered or something....????? i wanted to know if i needed could i start azith...told me to call igenex i call igenex ...lady at front couldn't help me..it was a littl hard to understand her..and the person who knows won't be in till monday??? i can't tell if we are trending better again or not....yesterday morning he asked to do nasal rinse(he does not like it too much).....a small green gob came out...and little black specs, like pepper but more elongated..like fiber..but they were all equal in size..later last night said he feels hot..no temp...but i don't know if i trust my thermom...and i had to check on a friend and as i walk out says his throat hurt... came home at 10-10"30...asked dh any further update on throat...and he told his dad he felt fine.... maybe i should post some of this on the Pan board... anyway, going to try to call doc again... does anyone know about this test and the protocal and abx.... i want to use azith if i feel he still needs it

God Bless you and your dd too!! Just said a couple of Hail Mary's for your dd and the other member there... if i don't do them before i post...and i get pulled away, sometime don't return to them...that happens even with eating sometimes..

I am so happy you are in a good place!!!!!!!!! I look forward to hearing of the good road ahead!!

i am going to reply to this one as it is most similar to ds when he was 5 and we were told no more aug... flash forward to march of this year(ds is 10)..i discuss with doc t...he thinks we should try augxr..as it may have been rf...so we try and about 7-10days in some rash and joint muscle pain...so we stop immediately.... we wait ...i go to see scott smith....tell him of experience...he says lets try again...i am not keen on this...my poor boy..i can't torture him.... scott said being that the reaction was 5-10 days out(not immediate), the aug is probably wiping out everything..and what is left will take over..yeast or fungus was probably getting into his muscles joints.....so once i comprehend and feel more assured..we try again.....but we use diflucan at the same time... we did 30 days hd with diflucan...no problem...unfortuanetely no immprovement.... now i know it may not have been long enough..but i also think it was his allergies at this point putting him in to a chorea state

Debbie..not sure if you caught the part i where i was trying to suggest maybe you need more time this round...as your dd and ds have different systems.... i know when i speak...it is probably confusing.....i have to make pictures in my mind so i understand..that's why all the analogies

i have another question..... aren't there conditions that receive monthly or regular ivig...some ms cases...and some others... are those hd or ld? is there the same concern of allergic reaction for that... sorry if this is all repetitive....but have a hard time retaining most of all the info i keep reading and reading

i hang on the pandas board mostly...but with tears in my eyes and COMPLETE understanding!!! lets pray for each others families!!!

i realize that your children have lymes but i have wondered too...and they don't have lymes that is known of but there are others who have had several with great response each time????? are those the ones who did it 8 weeks apart with no hesitation...vs waiting 3,6,9 months....

Yes. but i was also wondering...per today's talk and now new topic...if it is something similar to allergy shots....building a tollerance. and not create an allergic response like anaphylatic shock....vs....if the doctors intent is to build slowly... put the foundation down, let the mortor cure and add on... can you tell the difference it what i'm asking...it's the best i can do.... also i think NGU does check the ig levels regularly...i think and i remember that there was info about using a different brand if iga were low and you should have those checked prior to ivig.... so i wonder..and this is just a discussion here....if Debbie should check what brand of ivig her children received...and if it would be safe if she changed to the other brand..

are you saying try a gluten vaccine? or diet... caryn on the ts board cured her son of ts with gluten free diet...i think they decided to elimanate corn too,,,,