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momofone23

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  1. Hi all, First backgrounder, then my questions........ • 15.5 year old son had intermittent eye-blinking tic since age 2. Went misdiagnosed as allergies, etc. • Developed Herpes on the bottom of one foot at age 3 following a high fever. It took several years and 3 dermatologists to finally get the correct diagnosis. • Diagnosed with learning disabilities by 2nd grade. Major executive functioning and processing issues • Displayed some characteristics of anxiety disorder and a little OCD here and there, but pretty mild • Age 14, VERY rapid puberty onset, voice dropped dramatically in very short time • At the same time, started onset of a variety of vocal and motor tics, some pretty complex. • More severe anxiety and OCD symptoms followed, however OCD is mainly limited to the "O" part. • Herpes seemed to migrate from his one foot to his mouth in the form of mouth ulcers during this same time period. • None of this is what I would call "sudden" or overnight, however his tics did progress pretty rapidly from mild to moderate/severe, probably over a 2-4 week period • Throughout all of this, even when his tics are at their worst, his personality and behavior has pretty much stayed the same, except for the typical teenage stuff. • Now to the point where his tics, anxiety and "O" have made him just about non-functional. He goes to school 3 days a week, but even that is a huge struggle. • Very sensitive to light, goes to bathroom, brushes teeth in dark. Also very sound sensitive. Puts fingers in ears a lot. He had the initial "ASO titer" which was negative, but from what I understand there are a lot of other blood tests that can help in determining PANDAS or autoimmune issues. From everything I read about PANDAS, it seems like the symptoms (tics, OCD, etc.) are almost literally overnight, and not over a period of several weeks in the onset as with my son. I wondered what you all think considering what I've described with my son's symptoms, onset, progression, etc. Thanks much! Karen
  2. Thanks Eileen. Are you in the DC area or does DC stand for something else in your username? I'm in northern VA. Where is the USF program? I'm guessing it's San Francisco?
  3. Hi all, I also posted this in the OCD forum, but I figured it might be good to post here as well, hope that's okay. My son, 15, has pretty severe TS as well as anxiety and OCD. His OCD is really pretty minimal, it's more obsessive thinking than any type of ritualistic behavior, however his anxiety is much more severe. I'm wondering if anyone on the forum has had experience with their child going through the residential program at Roger's for OCD/anxiety for teens? This program was recommended for my son by a local facility where he was in a partial hospitalization program recently. They felt that his anxiety and OCD is mainly what drives his tics, and although it's hard to know for sure, I think they are right. He is currently on the wait list for Roger's program, however before I really seriously consider it, I will have to go there myself to see the facility and also am desperately trying to find other parents to connect with whose kids have been through the program, especially those with TS. The intake director told me they have had several TS kids go through the program, but she was not willing to pass along my contact info to any of this "alumni." Not sure I understand the problem with that since I am not asking her to break any confidentiality and it would be completely voluntary on the part of the other parent as to whether they wanted to contact me or not. Anyway, if any of you have had your child through this program or might happen to know of someone who has, I would love to find out further details. Thanks in advance! Karen
  4. Hi all, I wasn't sure if I should post here or in the Tourette's forum. My son, 15, has pretty severe TS as well as anxiety and OCD. His OCD is really pretty minimal, it's more obsessive thinking than any type of ritualistic behavior, however his anxiety is much more severe. I'm wondering if anyone on the forum has had experience with their child going through the residential program at Roger's for OCD/anxiety for teens? This program was recommended for my son by a local facility where he was in a partial hospitalization program. He is currently on the wait list for Roger's program, however before I really seriously consider it, I will have to go there myself to see the facility and also am desperately trying to find other parents to connect with whose kids have been through the program, especially those with Tourette's. I had asked the intake director at Roger's if there was any way she could pass along my contact info to former "alumni" and she said they were not able to do that. I found that a bit odd since I was not asking her to break any confidentiality and it would be totally voluntary for the other parent(s) to contact me or not. Anyway, would love to hear from anyone who might have first hand experience with this program or know someone who does. Thanks in advance! Karen
  5. Michael, thanks so much for sharing your story. Wow, that's pretty rare to have a TS diagnosis as an adult, but it makes sense that it ended up being Lyme. Like you said, I think it's hard to distinguish typical TS tics versus typical Lyme tics, although I'm not totally sure. I've never had any symptoms to indicate Lyme or any such infection nor has my husband, so I doubt it's a congenital thing in our situation. If I had to make a guess I'd say that most likely his immune system was compromised by vaccines since he had chronic ear infections and then got the herpes on his one foot at age 3. He also never had any Lyme-like symptoms other than the motor and vocal tics, which surfaced last summer. He's been on antibiotics for several months now, currently on his second rotation of using different meds. From what I've seen on the board and what I'm hearing from everyone responding to my post it definitely sounds like Lyme is playing a part in my son's TS, or who knows it may not be TS at all and be 100% Lyme, but only time will tell with continued treatment.
  6. Thanks, Wendy. You make a good point about the possibilities at age 2. In fact, one thing I forgot to mention is that my son had chronic ear infections as an infant, which subsided by about age 2, which is when the eye-blinking tic began. Also, when he was around 3.5 years old, he developed what was later diagnosed as herpes on the bottom of his left foot. Thankfully, it has always remained only on his left foot, but he would get these terrible outbreaks with huge, painful blisters on the bottom of his foot. My gut feeling is that vaccines have a lot to do with the ear infections, and especially the herpes, since it's in the same family as chicken pox, which he was vaccinated for. HIs doctor who's treating for Lyme also wants to run metal toxicity test to see if that's an issue. He feels that my son's tics should have subsided more by now with the antibiotics, but I think what you mentioned about the typical 2 year recovery time makes a lot of sense. Karen
  7. Thanks everyone, it really helps a lot to hear from others dealing with similar situations. Nancy D, how old is your daughter now? It's great to hear that her tics are completely gone. Was she diagnosed with Lyme and TS, or what was her diagnosis and how long did her tics last? Lismom, I totally agree that if there's anything "hiding" or lurking in a child's body puberty will certainly bring it out and add fuel to the fire that may not have been visible beforehand. What type of treatment is your son on for Lyme? Wendy, could you tell me a little about what your son's treatment was for the Lyme? It is possible, as you said, that my son had chronic infection since 2 but his body was able to handle it until puberty, however his eye-blinking began before we moved back east, we were previously living in Southern California in an area where tics are not at all an issue, and I had been living there all of my life as well. We believe that he contracted Lyme here on the east coast (Northern Virginia) about 6 years ago when he was bitten in the head by a dog tic. At the time I knew of Lyme, but was under the widespread misconception that only deer tics can transmit, not dog tics. We had taken him to the pediatrician to have the tic removed and even they had no clue about this either as they instructed us to put neosporin on the area and go on our merry way. Had i know otherwise at the time I would have asked to have him put immediately on antibiotics. So, yes, anything is absolutely possible, but it seems from what has transpired that the most likely situation is he was infected 6 years ago when he was bitten and prior to that was exhibiting a mild and misdiagnosed case of TS with eye-blinking and for a short time throat clearing, until puberty hit, which then gave the Lyme an opportunity to surface and exacerbate his pre-existing mild tics/TS. Some days I feel like his situation is all about TS and not Lyme, other days I think the opposite and many days I'm just not sure. We will continue with antibiotic treatment and I pray that eventually his tics will subside or at least become more benign and manageable. Karen
  8. HI all, I've seen a few references in the Lyme forum about motor and vocal tics and wanted to ask those of you whose kids have both Lyme and TS how it's possible to distinguish between the two as potential causes for the tics. My son (15) was diagnosed with chronic Lyme about 6 months ago, however he had absolutely NO symptoms whatsoever to indicate Lyme with the exception of motor and vocal tics from TS. His case is somewhat complicated because he only got diagnosed with TS about a year ago, however it's likely he's had it since age 2 when he began with an eye-blinking tic. Over the years there were no other indications pointing to TS, but of course had I known more about TS at the time I would have put 2+2 together much sooner. He's always had learning disabilities and executive functioning issues, but aside from that nothing unusual. Last August he went through a rapid onset of puberty and at the same time his eye-blinking tic (since age 2) turned into moderate to severe motor and vocal tics almost overnight. The eye blinking tic (prior to this) had waxed and waned and there would be many months where we wouldn't see it at al or very little. After his tics went crazy during puberty, although we were pretty sure it was TS we also wanted to rule out other possibilities. This is when we discovered he had chronic Lyme, however we believe he contracted the Lyme about 6 years ago when he was bitten, it's pretty doubtful he had it since age 2 when the eye-blinking tic first began. He tested positive, but it wasn't a really strong positive and it was only 2 bands that showed positive. He's been on abx for about 6 months now, rotating between a few different ones. Anyway, back to my initial question.......how do you determine whether it's the Lyme or TS (or both) that are causing the tics to persist in a situation such as this? And are there some tics that are more common with Lyme vs TS or visa-versa? My son's tics seem to morph into new ones roughly every month or so (give or take). They've gone from seizure-like tics with dystonic posturing that were very intense to a tic "routine" and now to what is a high pitched screeching tic that seems to be mainly vocal not physical. Would love to hear from anyone who might have experience with a similar situation. Thanks much! Karen
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