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  1. Hi everyone, I took my son to a new alternative Dr. today to talk about his Lyme. I don't think it was properly treated and still in him. The doctor agreed as well. So, fast forward to lots more in-depth testing of all kinds and more meds, which is a step in the right direction. Very hopeful. Anyway, in addition to the Abx, he's giving him Nystatin. Does anyone know of any awful side effects with this drug? Just want to know what to expect. Or is it generally well tolerated? Thanks so much. Christy in NJ
  2. Laura, I was so happy reading your post just now I wanted to cry. We are dealing with similar issues -- Lyme causing Pandas symptoms -- in my soon to be 7 year old son. He changed overnight in september and it's been a tough two months. Lots of crying. He is anxiety ridden now with panic attacks. He has a fingers motor tic too. It's killing me to see him like this. Anyway, we're in NJ and I'd love to know which doctor you saw who really figured this out for her and put her on the aggressive meds. I have our 2nd appt with our Infectious disease Dr. tomorrow and i'd love to know wh
  3. Wow, that is amazing how her symptoms were/are so similar. How wonderful that you see her improving now. So happy for you. So I guess the LLMD's really know the meds to use to treat this. I just took him in today to test for 5 co-infections, including the Bartonella of course, so we'll see what that brings. I meet with our infectious disease dr. on Wednesday. I'm very curious to see what he says. His "brain fog" has disappeared and his physical strength seems to be coming back, but it's the anxiety and nervousness that really concerns me. Poor kid. Thanks ladies for all the support. I hope eve
  4. momcap - Any chance you see a LLMD in NJ? Or is Dr. T treating his Lyme? It seems hard to find a really good one. I'm a big fan of referrals. Can you email me if you know of a very good one? lismom - Good to know I"m not the only one seeing the finger movements. It's his one and only motor tic and I guess I have to learn not to let it bother me, but it's hard. Is your son still fighting Lyme? Is he doing better? If you don't mind sharing, I'd love to know what kind of meds and/or supps he's on. Thanks ladies.
  5. My 7-year-old son was diagnosed with Lyme in mid-September and I could really, really use some help. My heart is breaking. He started 1st grade early September and from the 4-5th day on he came home crying and saying his throat & tummy hurt, that the day was too long, it was too hard, etc and that he didn't want to go. We all thought he was just having trouble getting used to the longer day of 1st grade. He was having panic attacks before bed and in the morning, getting himself so upset. He was like a different kid. Three weeks later we took him to Disney and the entire vacation he w
  6. Momcap ~ That is amazing news! So happy to hear that about your son. Can you tell me what his major lyme symptoms were that have changed so much? Also, what types of meds is/was he on? Thanks. Christy
  7. Is Culturelle, in and of itself, a "bad" probiotic to give PANDAS kids? I've been giving it to my kids daily since last September, and while I swear it's kept them from not getting even a sniffle, I'm wondering if it's ultimately contributing to their anxiety/tic symptoms? Just curious. I read a few posts from moms saying that it's not so good. If so, is there a better OTC one i could give them? Thanks!! Christy
  8. I think we have all heard this response at one time or another. I say NO NO NO the treatment is not completely the same and the differences can be huge. YES talk therapy (CBT/ERP) works for PANDAS and YES some kids need to go on psych meds... but talk therapy and pysch meds alone do not fix it. When our kids have a ramp up of symptoms it means there is an infection or some type of inflammation present and we need to figure out what that is and remove it (to the best of our ability) before we can expect talk therapy to work and before we mask it with psych meds. Once the infection is cleared,
  9. Thank you ladies. You are such a wonderful resource. This board is incredible. The "not ever having a raging strep throat diagnosis" for either child had me wondering, but they seem to fit each and every other criteria. The newest one I'm noticing and wondering about are processing delays. My 8-yr-old daughters teacher called me today wondering about processing delays with math facts. I can see the same thing in my son. They didn't used to have these. My daughter started exhibiting tics last May, and then they went away a few months later only to resurface last week after a super stressful in
  10. Hi Lynn, Can you share with me the name/contact info of Dr. T in NJ? I'm in Hunterdon County and I'm exploring the idea of PANDAS. I wonder if it runs in families? My nephew has been ticcing for years and just now they tried antibiotics and it completely took his tics away. To my knowledge my daughter has never tested positive for strep, so I"m going to look into allergy testing as well, but I just wonder if she could have had it? Does strep always present with painful, hurts-to-swallow throat or can it be mild? Thanks! Christy
  11. I posted her last summer when my daughter started eye rolling and a few facial tics after a stressful incident at home. The tics continued for the summer and then seemed to go away after school started. I thought I had them pinned to when she was super tired or if she had red food dye or caffeine. She's been fine so long. Now for the past few days all her old tics are back, and today I noticed her relaxed arm was trembling, like a spasm. She said it's been happening all week, sometimes it's her leg. Is this typical TS or transiet tic disorder, or should I be freaking out about Parkinsons or
  12. Hi Lele, I am in the same boat. My son is 5 and asthma-prone. I usually have him vaccinated by now, but both he and my 8 year old daughter have been showing tics and I just have this sick feeling it has something to do with the flu shots/vaccines over the years. By now he is usually on Flovent as a preventive, but this season we're taking a "wait and see" and so far so good, thank God. I too though, feel if it doesn't get the shot and IS one of the sicker ones with complications I will feel so badly and responsible...it's a super hard decision. I don't think we'll know what these flu shot
  13. Thanks for all the responses. I am soo having trouble with this. Definitely do NOT give your kids Flu Mist. The live viruses in it are what actually triggered asthmatic symptoms in my then 3-year-old. Never again. I go back and forth on the flu shot for them. I don't want to make her tics worse. There is no evidence it does or does not -- at least not for many years. I feel like I should get it for my son in case something goes into his chest...but last year's flu season was among the most mild on record....augh. I wish I knew what was the "right" thing to do. Being a concerned mom is hard, is
  14. Hi Ladies, I'm curious about if most parents of children with tics/TS choose NOT to get the Flu Vaccine for their children or they just get them and not worry about it. My two kids, who are both mildly ticcing, have always rec'd a flu shot and most other vaccines every year. A flu mist actually caused my son to develop asthma when he was 3 years old. He was on meds for years. Today is is almost 6 and so far (knock on wood), super healthy and no asthma meds. I give him a probiotic daily and we all eat pretty healthy now. Anyway, my daughter, who is 8, began with facial/slight vocal tic
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