mandyknowles

Well i wanted her very well known lyme dr to test them a yr ago and he said no dont because they dont have symptoms. well my motherly instinct did it anyway and she has it. shes been having crazy rashes too...so i am very glad i had it done.

welp i had my other two kids tested for lyme by just the basic testing...middle child is positive too...youngest negative...isnt this just peachy?

She never really had any problems with handwriting until the ivig. now she cries because she just cant write. so as of today she does all of her homework on microsoft word. This way she doesnt feel too bad about not being able to write. And, see she cant have the prednisone because of the lyme.

It should...have you checked family members for strep (cultures, maybe titers)? My PANDAS dd's handwriting just fell apart when I got strep. I see she had IVIG a couple of months ago. What ab is she on? How about testing for Lyme? So the handwriting got worse 6 weeks after IVIG? I noticed my dd's handwriting was really bad immediately following IVIG #2 (I assume the IVIG "stirred things up") but I would think that 8 weeks post, your dd might be getting better. Yea it has gotten worse since the ivig. She is on minocycline and augmentin now, because of Lyme. And her mycoplasma was just retested and its high again...i wonder what that means? And, no we havent been checked but we are going to now.

Oh, and she has started sticking her tongue out and blowing over and over...i swear this is one wierd thing to have to deal with. it really saddens me that we all have to deal with this.

ugh gosh...i hope everything is ok.

So, does this not being able to write ever go away? I have to say this has been the hardest on my daughter. Even though it just started a couple of weeks ago, it is the hardest on her. Why does this mess with their handwriting anyway?

we did the 1.5 over two days...And yes she is on antibiotics and has been since december. IVIG was August 17th and 18th.

ok, this is what i have been dealing with, with my daughter since december. But, she just stops breathing, and I have to breath in her mouth and she comes back and jerks for a minute and then shes back to normal.

I have never heard of this. Have you called the doctor? Yep. He said he sees it in some kids, but cannot really tell me what to do about it.

So, we did IVIG and I really can't tell a difference in her than before we did it. She still has the chest spasms and jerks...Dr J said she will probably have to have more than one to be able to tell a difference. We changed her meds up a lil bit the other day so we will see..Also we go back to TX for a follow up and do blood tests to make sure her immune levels are up...idk this is just all so insane. I am just hoping we can get a break soon!

My daughter has chest spasms which cause her to stop breathing and I have to breath in her mouth...Does anyone elses child have to deal with this?

ok, we have been treating lyme since december and we did ivig just two weeks ago. I really cannot see any difference in my daughter but I am hoping that something changes. :/

Actually we have our appt by phone in two weeks. of course we have already been to see him twice.

my daughter sees dr jones. we really like him. our first visit was $875 for office visit and like $333. for labs, but i think it just depends on what he wants to do.

my daughter is 11 and she sees a counselor..she loves her and she enjoys going to see her. although it doesnt seem to make a difference whether we see her or not. She is not on any meds for that either.

I am sorry u are dealing with this...I own my own business and have been dealing with this for a year. I really dont know how I do it. I think that it would be easier to just stay home and take care of her and then I wonder how I will support her with all her meds and tests and such, so I keep going. I pray to god every single day that he will make this all go away, and I drink a few beers to take the edge off...Seems like thats all that helps me stay sane. So, take it easy on yourself and just keep going on day by day...You'll make it.

Can I just say Melatonin? thats all I'm saying

well, my daughter has lyme disease. she couldnt walk for months and she actually couldnt sit up for months. so, actually what are ur symptoms?

yea i hope so!!

well, we are home and the vommiting and headache have set in.. Yesterday she has at least 10 episodes from 3pm until 10pm, which is what they used to be like when she first started them. Ugh, I hope this works!

Well so far today has went smoothly. My daughter hasnt had any effects of the treatment yet; I hope she doesnt get sick. She is eating and everything...Making her dad watch Barbie lol...I will post more later on this afternoon.

Mine is on 2 at the same time. has been since december...But, she also has lyme disease so idk if that makes a difference

yep. mine at one point took every picture off our walls because she said she was scared of them. screamed and cried and i just left them off until she stopped doing it.

So, going into this whole IVIG thing, what should I do or not do? Can she eat?