cidermill

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

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 which meds she was put on/how long, if you'd care to share. I'd love to discuss that with him. My son has been on amox only and Im not seeing very much improvement. again, congrats to you on getting your daughter back. I look forward to the day I can post wonderful news like that as well. Christy

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 everyone has a good night.

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.

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 was saying he was so tired and asked to go back to the hotel. Then one knee joint swelled up. His eyes looked gaunt. Then out of the blue his hands/fingers would not stop moving. We immediately suspected Lyme, which was confirmed when we came home. Our ped put him on Amox 2x/day. I took him to an ID dr and he upped his dosage to 3x/day. He wants to test for co-infections, which we still need to do. He said any and all changes in his personality should be b/c of the Lyme. Once it's out of his system all behaviors should fade. It's not happening yet... Since starting meds, his fatigue is decreasing, joint not swollen, but his anxiety has good and bad days. It's still there though. He's doing well in school, but he's still not himself. My biggest concerns are his heightened anxiety and also his finger movements. He is always, always moving fingers on one of his hands. It has me so upset when I see him do that. He told me he can't stop them and he wants to. I want to cry. My heart is breaking for him. It's been about a month and a half now. Can anyone tell me what I should be doing next to try to help him? Just a note -- both my niece and nephew are Pandas. I, myself, have anxieties of my own, but nothing like movement disorders or panic attacks. My daughter had transient nervous facial tics for about 2 years, but are (knock on wood) seeming to be gone now that's older and more relaxed. Should I take him to a Pandas dr? Dr. T is in-state. Any and every idea or thought would be soo much appreciated. THanks ladies. Cidermill

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

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

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, then we can think about standard measures. I am very sensitive to this because I stopped looking for infections in my son after he had his tonsils out. He never had any strep throat and the docs all told me it didn't matter if it was PANDAS - we do the same thing. So I took him to CBT therapist for about 4 or 5 visits for two years in a row. He "suddenly" improved after4 or 5 visits each time (I thought it was becuase I was really good at following directions) NO! It was because it was spring and his sinuses had cleared!! Two years later he had PANDAS symptoms plus joint pains, body aches, fatigue. I was told that now it was depression and he needed to go on SSRIs. It didn't look like depression to me - he really wanted to go and do things ... he just couldn't (I am not afraid to admit or seek help when my son is depressed). That was when I re-explored PANDAS and the PANDAS doc said "let's check his sinuses" ... and there was a huge mucocele (cyst) in his sinuses that was eroding the bone between his sinus and his eye. It was a scary mess!!! Sudden onset of neuropsychiatric symptoms in kids with PANDAS signals an infection or inflammation somewhere in the body. Why would we ignore that? A high fever signals a sudden onset of infection or inflammation in the body and I am sure if a child had a 102 degree fever for a week or two straight the doctors would be doing every test possible to figure out what the problem was... .they would not say "Well... it really doesn't matter what's causing the fever - just give him ibuprofen or tylenol every day for the rest of his life while the infection rages on and he won't notice"... UGH Sorry - that is my soapbox - Hi Kim, I'm so sorry to read about what you've gone through. I am amazed they thought of the sinus and found that cyst. I'm just curious what they did to get rid of the cyst? After they fixed that, did his symptoms improve/disappear? I have a strong feeling my son AND daughter have this and I feel paralyzed as to what to do, who to see first. Feeling very scared and overwhelmed. Thanks for sharing whatever you can. Christy

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 incident. I'm wondering...How far ahead does Dr. T book out and any idea if he accepts Aetna insurance?

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

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 something else? I am very, very upset. This arm shaking really scares me. Please tell me it's a normal tic. I was going to run a bunch of tests on her to discover the root of why these are going on, but then they stopped. Maybe I need to look into that again and try to help her. Thoughts, anyone? Worried in NJ

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 shots are doing to our children for another 20 years, sadly...so far, no shots here. I did get one for myself, since "mom" is not allowed to be sick. Hang in there. I keep hoping I will feel at ease with my ultimate decision, but I don't' have that feeling yet.. christy

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, isn't it?!!

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 tics, I think due to stress, back in June. They seemed to disappear as school started, but are back badly right now. She sees a CBT every 2 weeks for anxiety/stress. She likes her, but not sure if it's working or it just takes time. We've only gone twice so far. So my big question in the Flu shot. What to do? I feel strongly about not liking all the additives and toxins IN the vaccines. I have this sick feeling when I think of shooting more potentially harmful toxins in her body. Am I crazy? My mom thinks I am awful putting my children in harms way of coming down with a flu this year. My son especially -- since by now he is usually coughing -- but he is so healthy right now...since he has been on preventive asthma meds for the past few years, should I just get him/them a flu shot or should I risk him getting the flu and just treat that if he gets it. I'm just not sure....any opinions would be greatly appreciated.