danddd
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Posts posted by danddd
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Hi everyone, dd9 had ivig a week ago. it went smooth, and just like you guys said, it was sooooo nice to finally have trust, and let the doc do all the work. she did have migranes and vomiting at night on second day, but she got through it. i dont really believe it but her rages are already much better. she is resisting the urge to hurt me when she gets mad! (but we have traded that in and got some depression and sadness). she played with her sister today too! taking all of the meds and supplements is the hardest part for her. one day it took her 3 hrs to take the augmentin!
on another note, i myself am realeasing all of the stress now through tears. i held it all in during the treatment. maybe i am crazy, but it feels a bit like post-partum depression.......sad yet happy, yet nervous of change. ivig is so odd. such a simple procedure, but so many emotions attached to it.
thanks,
danddd
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my daughter also has more obvious tics, and ocd when she is excited/happy/nervous.
it happens whenever she is with her cousin and having fun.
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thanks so much, i needed to read all this!
i am feeling a little better.
it seems that a lot of kids have vomiting on sundays.
that is when we are flying home, yikes.
oh well, i will remember hydration, motrin etc.
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It is finally happening. I'm taking dd9 to dr.k next week for ivig.
I am happy, but scared to death.
What should I bring besides dvd's and other things to occupy her?
I really need to calm down, it will be fine right?
i am doing the right thing.....i am doing the right thing.....i am doing the right thing......
thanks guys
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hi everyone,
I think I am going to order a couple kits from igenex.
question: is the urinalysis good enough for my dd9? (pandas dx i dont susupect lyme, but to rule it out)
she was neg. on the ELISA lyme ab total last year at the "sudden onset" of pandas.
she also was neg 3 years ago after i tested positive.(i dont have the paper so i dont know if it was elisa again or western blot)
also, when she did 2 months of augmentin for pandas, i did not see any herxing. so, maybe she doesnt need to be poked again?
what do you suggest I order for her?
also, another question, i really think my mom has lyme, elisa tested neg., is the comple lyme panel (6050) good, or too much, or should she test for co infections too?
thanks guys for your help
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subQ, meaning sub-cutaneous ivig?
i have read about it a bit, but thought they did not do that in the u.s.
does anyone know why it is not good for pandas?
i thought it was just as effective, but the ammount used was less, and it has less side effects.
does anyone use that method for pandas?
thanks
danddd
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thanks guys for helping me put it in perspective.
norcalmom, good luck with ivig. i hope you see improvement quick, and those bad thoughts are taken care of.
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anyone know what the statistics are for getting cjd from ivig?
all of the brands list it on their site, but not if it has ever happened
i wanted to link this to my other post "ig screening" but i dont know how...is this right
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hi everyone,
so now we have been told that dd9 has the best shot at recovery with ivig. (this means a trip to chicago probably)
i am very excited, and scared, i am sure many of you know exactly how i feel because you have been through it.
i have been looking online to see what exactly the donated blood for the ig is screened for, besides the basic hiv, and hep c. etc.
it is just tested? or is there some sort of cleaning process?
can some things like lyme be transmitted, if there were a false neg.?
maybe i am not good at google-ing because i cant find what i am looking for.
thanks for any info,
danddd
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so i will definitely keep it short, thanks for the suggestions!
i am worried, it seems dd had almost a week with some improvment(less rage and her personality came back a bit!), but now getting worse. we already had the phone consult, now just emails.
it seems that a lot of us are having or just had consults with dr.k.
it means a lot to have the advise of those who have already been there.
thanks
danddd
good luck kirsty s, the hour goes by quick, but he seems to get what your saying real fast! hope it goes well.
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hi everyone,
i am keeping track of my observations for the 5 days prednisone and following 2 weeks. i have written about a paragraph for every day. those of you who have already done this, how much info did you sent to dr.k? is he just looking for something like:
day 1 tics better
ocd worse
or should i send the whole essay?!
i dont want to be overbearing...
danddd
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momtocole1,
I watched last night and cried seeing your son so distraught. so many of us here describe our kids troubles, but it is so different to
SEE it. my daughter has had moments eerily similar (in bed writhing), man.....it made me realize the similatites we talk about are really there. i hope you get more positive feedback than negative. it was very brave of you to do. hope your son continues to get better, THANK YOU!
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norcalmom, and mama2alex,
did the dr. have you do the 5 day prednisone and 2 week observation first?
that is what we are doing now, and i am anticipating flying for in ivig too.
how long is the wait when you scheduled the ivig?
i hope it all goes well and smooth, good luck!
danddd
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she hasent had cunningham test yet, i assumed that she didnt need it since she already has a diagnosis
but maybe i should have it done, it is interesting, i didnt know there was such thing as a s.c. range!
i have a lot to learn still about that.
i will look into braingym too.
emerson,
it is funny you mentioned neuro-feedback.
she actually tried it before we knew about pandas, and it really did relax her too.
it made her really sleepy too, she would almost fall asleep in the car going home.
the only problem was that the psychologist was horrible, and was "searching" for reasons for her problems, not good.
it is hard to find people who do neuro-feedback, i dont know why....
have you tried acupuncture for relaxation?
after we left the neuro-feedback lady (and couldnt find another person who does it), i took her for acupuncture, and she has been going for a year.
she says it calms her, and she actually lays on the bed quietly for 30 min.
anything to help
thanks guys
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my dd9's first noticable symptom was the motor skill bit (everything else followed soon after-anxiety ocd tics etc).
she could not play tennis anymore, she lost all the ability she had, and with it her confidence.
it has been a year and a half and they have still not fully returned (maybe 40%).
i know lots of you have seen the handwriting problem.
has anyone seen any treatment clearly helped their child with motor skills?
also, for those of you who went to the conference, did any of the 3 talk about this symptom?
thanks
dan
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That is a sin! Some folks are just not cut out for the service industry and should be in front of computers...where they can be grouchy at a monitor that isn't depending on them!
You all really pulled through! The doc gets in at 1pm, so we're off and then to the pharmacy!
What is tegaderm, and what is versed?
thanks (sorry if it is obvious)
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Am curious about strep on the skin being tested. How do they find it. Is the strep visible (such as a rash or sore) or do they just sort of do a random swab hoping they come up with something? We're not going thru this but have heard of it.
good question, I wish someone would answer.
danddd
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Vicki, "no inhibitions" Brilliant !!!!!!!!!!!!!!!! my dd's behavioral therapist just said she was starting to become "disinhibited", there has been a definite shift in things lately. she is on seroquel...............
this forum is amazing.....
thanks for posting that,
danddd
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for those of you who's children have had ivig, but had to travel to get there, how did you do it?
it would be a 2 day drive (taking in account stops and such) or a 2 hr plane, and i dont know which would be better.
can a child even fly after ivig, or is it not recommended?
i cant imagine traveling if she is sick from the procedure, so i was hoping to get some insight from those of you who have done it.
thanks,
dan
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my daughter was on lamotrigine for mood but it is for epilepsy, and she had no cognitive or any other side effects.
she has a friend with epilepsy who is on it, and doing well.
also, what about going beyond the neuro's to an epileptologist?
hope it all gets sorted out
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thanks, I guess it can be very up and down the steroids
Elisabeth,
so sorry your son has lyme too. i do worry about it, because i myself have lyme (went undiagnosed for a loooooong time).
do you see the classic "getting worse before better" when your son starts abx?
i assumed because my daughter doesnt get worse when beginning abx, it would be safe to say she does not have lyme.
from my own experience, every time i start abx, it is like being hit by a truck.
maybe i should not assume, what do you think?
i did look into the igenex website, just in case.
dan
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Hi everyone,
doctor has recommended a 5 day prednisone burst for dd.
we had one before last year (but longer, 1 wk plus 2 wk taper), and it was a NIGHTMARE.
so needless to say i am nervous about doing it again.
my understanding is that it is standard to do the burst before giving ivig.
for those of you who have done ivig, did you do the burst beforehand? and if so, did they produce similar reactions?
I am just thinking, what if the prednisone is just as bad this time around? and then the ivig makes her way worse too? is it possible?
I know a lot of your kids are in the midst of "turning back the pages" now. (i reallly hope they are starting to do well) Did a burst give you a preview of what would happen?
maybe I should just suck it up, give her the prednisone, and prepare for the worst?
if anyone can share their experience of these two things it would be soooooo helpful.
thanks everyone,
every time i think i know what to do, i second guess myself.
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Or almost an "allergic reaction," like her immune system reacts strongly to whatever impulse/agent (anaphylactic shock-like?) and brings about inflammation in her face. Wondering . . . do her hands or feet get puffy at all, too? How long does it last?
It is only her face, and it slowly goes away after the meltdown.
It could be for 20 min or a couple hours. Thanks
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when dd is going to have an outburst of somekind, her face gets very swollen, puffy, and round. When it is all over, and she is feeling better, her face returns to its normal slender state. Has anyone else seen a similar experience?
when I tell the docs., they just say they dont know, but it is interesting............
any ideas or thoughts............
almost 1 week post ivig
in PANS / PANDAS (Lyme included)
Posted
we saw dr.k, it was great. insurance already denied our request, so I will soon start the appeal. we were not expecting to be able to have it done before school, so we were surprised when it was offered. it happened so fast, i couldnt wait and fight ins. first. i will keep at them though, it is not fair what they do to families.