mandyknowles

My daughter has them and i have to breath in her mouth to get her to breath again. Her dr said thats a hard one to get rid of...We have been dealing with that specific symptom for over a year now...not fun at all

Yea its been a crazy time, and I am so thankful she has come this far. Now, we have another child who is also positive, and i am taking them all to CT in April...Talk about a long and expensive trip. $975 now for a new patient where my oldest goes, and i have to take her and 2 new ones...geez what next?

Well she is on 3 abx now so whatever they did its working. I am sure he has treated her for it because she had some purple stretch mark things and he changed her meds up.

Sorry I havent been on in a while...Things have been hectic with work and kids haha...She is doing much much better now. Hardly any jerking at all. She still has the chest spasms but its only like once a day. We have another appt in CT on Feb 15th...wonder if we will get snowed in?? Great to hear!! Don't get me started on the snow...they're calling for more, again next week in Philly. We have our follow-up in two weeks. I know...kinda makes me want to wait to get my plane tickets till closer to time, because if its a blizzard we may have to reschedule...Us Oklahoma folks are used to 60 and 70 degree weather here lol

My daughter sees Dr. Jones. When we went to see him, my daughter had to use a walker and a wheelchair and could barely sit up. a year into treatment she is walking, running, jumping, acting like a normal kid. She still has alot of complications from time to time, but alot of the time she looks and acts completely normal.

Sorry I havent been on in a while...Things have been hectic with work and kids haha...She is doing much much better now. Hardly any jerking at all. She still has the chest spasms but its only like once a day. We have another appt in CT on Feb 15th...wonder if we will get snowed in??

They are kind of like seizures but she is consious and she can talk...slurred talk, but talk. She has done this since December of last year. They change in frequency and severity, so we never know when and how bad its gonna be. It's for sure a crazy thing to deal with.

Yep, he took her off the meds last week and i called them back yesterday and they just called me back and told me to start zith back for 4 days and then add the other two back. So, that is a total of three now. I just hope it works. He also said she needed to have another IVIG treatment, but right now I just want to get her back to not jerking as much.

It is pretty bad and she has been off of medication for a week now and it hasnt helped at all. I am supposed to call them back tomorrow but i am thinking i will call them back today and see what I am supposed to do. I dont know exactly what this is, i just know she is having the jerking episodes like crazy.

Her dr is Dr J in CT

So, it has been a week since my daughter really started jerking again...Talked to her dr yesterday and they said to stop all meds; they think its a flair up...Why do we stop meds at a time like this?? I thought it was better to keep the meds going to fight the infections..Guess Not...And, I was wondering, does anyone have their children on SSI??

Ok, well the only thing that came up positive for me was Mycoplasma IgG... I'm having a leaky bladder i think though...can that be part of all this mess?

Ok, so i am going to get tested for Lyme today...What all should I tell them I want done?

Well could that be what she has? I mean, she says she feels like she can't breath right before it happens.

Idk..What is air huger?

Mandy, I'm sorry to hear that! How is she doing now? Melinda um YES! She has like jerking episodes and it made her do it alot more frequent and severe, but they said that was good. O!! She is doing tons better. She only stops breathing one time a day now...hopefully its almost gone...I just hope nothing else surfaces

Wendy- Yea she has been on two antibiotics, sometimes 3 at a time. Right now she is on the minocycline 100mg and augmentin 875mg

um YES! She has like jerking episodes and it made her do it alot more frequent and severe, but they said that was good.

I googled it and it is also called minocyclene. They often use minocyclene instead of doxycyclene when the person is going to be unable to stay out of the sun. It is less sun senstiive. However I tried it and it made me feel a little weird. My friend also tried it and felt crummy. We both felt better on doxy than minocyclene. Our llmd said that women do not seem to tolerate it as well as men do. Just something to keep in mind. Other options are doxy, doryx (slow release doxy). I am sure your llmd had a good reason for minocyclene. That was just our experience :-). Thanks lyme mom, I will keep that in mind. My daughter has been on minocycline for a while now...she is doing well on it, although he had to increase her amount because it seemed like she tapered off and we werent seeing anymore improvement. But now she is doing well

u know whats so weird about that? Cas tested positive for that and she has those chest spasms....ugh so much to learn with this

U R kidding? OMG my husbands grandpa was diagnosed with diabetes and dementia and he is still alive!!!! That is totally insane because really it could be lyme!!

Well, so now my mother in law called and she has Lyme as well...so, next is myself and my husband to get tested...I wonder if my mother in law has had it the entire time and passed it to my husband and then he to my kids?

ya she has been seriously emotional lately and has had rashes that i thought were ringworm because my oldest didnt have a rash and boom all of a sudden she couldnt walk. So, with my middle, she has had some attitude problems lately and she still wets the bed...is that a symptom? im not sure on that

OMG really? I did not know that!!!

nope i havent been tested but my husband is gonna be tested soon and i have to get into the dr to be tested. my oldest has pandas as well as lyme and i am so glad we found out sooner than we did with our oldest. Do you know how families get it?? since its not contagious??