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GloryMom

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  1. Thanks so much for the offer of help. I hadn't thought of mold and our old house had mold in their rooms (we moved 2 months ago). If you could send me the links to that information I would so appreciate it. My younger daughter had been test d for Lyme but it was negative. She had a condition that included low fevers, stomach pain, headaches, light sensitivity, and pain in her legs, so much so that she couldn't walk for over 14 months. Every 6 weeks or so something else would go wrong and it was truly awful. Especially because no one could/would help her. They just said it's not_____, and then I'd get a referral to the next doctor. Hence me totally ingoring my older daughter's beginning problems. The mold question gives me another avenue to pursue. Thanks
  2. #1 Teen:incapacitating tics and issues: post #1 GloryMom Newbie Members Pip 2 posts 0 warning points Posted Today, 03:36 PM Hi All, I'm new here and I'm wondering if anyone else has come across these types of tics, and could it be related to PANDAS/PANS? I guess I'll give the rundown of our situation for background. My daughter started having tics at age 12. They started after she was really sick (sore throat, headache etc)for a week, but she was negative for strep. Our other daughter was sick in hospital(hindsight possible pandas/pain processing disorder) and I didn't do a good job of paying attention to other daughter. She spent a lot of time in her room and we noticed her doing things but we thought it was for attention(with sister sick we knew she needed more but didn't have the energy to give it). Within 7 months she had every single tic possible (complex vocal, gross motor, copropraxia, coprolalia, and a few more and they happened all day and much of the night), she had severe anxiety, sensory sensitivities, depression, ocd, panic attacks where she blindly runs away, and she had self-injurious tics. She has auditory and visual hallucinations and she also developed purging behaviour, and self-harm. Her schoolwork has stagnated and has worsened in math/science but I don't know if that's because of the interruptions to her thinking from ticcing so much or another cause. The daughter who I thought was totally normal, with acknowledged very mild tendencies to ocd, was now struggling so much. She is now 15 and is still struggling. Her psychiatrist is excellent and he believes that there's more going on than TS(he's a top person in his field). The only pediatrician in our area who possibly deals with Pandas spent 15 minutes with her, insulted her, and refused to treat her. She's been on fluoxetine, respiridal, and citalopram with no changes seen. The tic that is most problematic is what we call a seizure tic. It's not a seizure (the neurologist actually saw one) but it looks similar. Out of the blue she falls down and her muscles all tense up, she arches her back or flexes into gymnastic positions(she dances and is very flexible and strong). All of her muscles are tense and then she often bangs the back of her head, twists around slowly, and then the muscles contract inward rapidly like she's a ball, and then flex outwards again. This goes on from anywhere between 10 min and 90 min. She has absolutely no control but she can hear. She can't see or control breathing(like holding her breath). As a result of this tic she has had 3 concussions, has almost drowned, has crashed her bike, and been generally bruised and embarrassed. Her psychiatrist who is treating her agrees with me when we say can't find a trigger. It happens when she's asleep, when she's quietly reading on the couch, when she's baking, out for a family bike ride, or when she's at the mall. This has made things really hard for my daughter over and above the other things that she deals with. We're still trying to see if we can get her diagnosed with Pans/pandas, as her symptoms seem to veer away from TS. Her psychiatrist says there's no sign of psychosis from schizophrenia (which I think is why she was on respiridal). On the other hand I don't want to chase down a diagnosis that is inaccurate. I just want my daughter to get some relief and some hope that there is something we can do to help her feel better. Sorry for such a long post but it's complicated...If anyone has experienced tics like my daughter, I'd love to hear about it and thanks for reading.
  3. Thanks for your reply. When I mentioned that she was negative for strep, it was just that illness, and yes it was a throat swab. Her father took her in as I was at the hospital with her sister for a week. They had both had strep a few times the year before. My 15yo has had various bloodwork panels done, but I don't believe they do the Cunningham panel in our province(Alberta). The pediatrician said that he would treat her younger sister (although she's generally healthy now) as in his opinion her history seemed to indicate pans/pandas, but refused to treat my 15yo. The psychiatrist has argued with him(in his words) but the pediatrician refuses to treat her. Shrug...It might be because of her self-harming as that is what he insulted her about ("why do they do that(cutting)to themselves. They should just talk to someone!--my opinion-yes it's a maladaptive coping strategy but you don't get to judge her when you know nothing about the she's living) So right now the psychiatrist is trying to decrease inflammation-has put her on probiotics. If there's any test that gives him the indication that he can put her on antibiotics or do IVIG he will, he just needs some proof and someone else to actually treat it because it's not his area and he doesn't want to do something wrong. (To complicate things my daughters are both allergic to amoxicillin, so prophylactic antibiotics is not something to try on a guess) All of my 15 yo's symptoms were well defined before she was put on any psych meds, so he's not a med pusher at all. I will keep pursuing this. I just would like some indication that we're on the right track. I do feel ok that it's the psychiatrist that is saying that there is a strong chance there's something else going on. He is the TS expert in Canada, so he knows TS. We just want to help our daughter and give her some hope. She really needs it as life is super hard and her mood has been really bad the last few months(meds are still locked up and she's addicted to cutting-and yes she's been seeing a psychologist) I'm not trying to spew out all of the problems, it's just that it is a really complex situation and background is needed in order for people to help. Btw, no one at our local TS support group has anything similar at all. ETA: she has had EEG and a sleep deprived EEG and they're both normal.
  4. Hi All, I'm new here and I'm wondering if anyone else has come across these types of tics, and could it be related to PANDAS/PANS? I guess I'll give the rundown of our situation for background. My daughter started having tics at age 12. They started after she was really sick (sore throat, headache etc)for a week, but she was negative for strep. Our other daughter was sick in hospital(hindsight possible pandas/pain processing disorder) and I didn't do a good job of paying attention to other daughter. She spent a lot of time in her room and we noticed her doing things but we thought it was for attention(with sister sick we knew she needed more but didn't have the energy to give it). Within 7 months she had every single tic possible (complex vocal, gross motor, copropraxia, coprolalia, and a few more and they happened all day and much of the night), she had severe anxiety, sensory sensitivities, depression, ocd, panic attacks where she blindly runs away, and she had self-injurious tics. She has auditory and visual hallucinations and she also developed purging behaviour, and self-harm. Her schoolwork has stagnated and has worsened in math/science but I don't know if that's because of the interruptions to her thinking from ticcing so much or another cause. The daughter who I thought was totally normal, with acknowledged very mild tendencies to ocd, was now struggling so much. She is now 15 and is still struggling. Her psychiatrist is excellent and he believes that there's more going on than TS(he's a top person in his field). The only pediatrician in our area who possibly deals with Pandas spent 15 minutes with her, insulted her, and refused to treat her. She's been on fluoxetine, respiridal, and citalopram with no changes seen. The tic that is most problematic is what we call a seizure tic. It's not a seizure (the neurologist actually saw one) but it looks similar. Out of the blue she falls down and her muscles all tense up, she arches her back or flexes into gymnastic positions(she dances and is very flexible and strong). All of her muscles are tense and then she often bangs the back of her head, twists around slowly, and then the muscles contract inward rapidly like she's a ball, and then flex outwards again. This goes on from anywhere between 10 min and 90 min. She has absolutely no control but she can hear. She can't see or control breathing(like holding her breath). As a result of this tic she has had 3 concussions, has almost drowned, has crashed her bike, and been generally bruised and embarrassed. Her psychiatrist who is treating her agrees with me when we say can't find a trigger. It happens when she's asleep, when she's quietly reading on the couch, when she's baking, out for a family bike ride, or when she's at the mall. This has made things really hard for my daughter over and above the other things that she deals with. We're still trying to see if we can get her diagnosed with Pans/pandas, as her symptoms seem to veer away from TS. Her psychiatrist says there's no sign of psychosis from schizophrenia (which I think is why she was on respiridal). On the other hand I don't want to chase down a diagnosis that is inaccurate. I just want my daughter to get some relief and some hope that there is something we can do to help her feel better. Sorry for such a long post but it's complicated...If anyone has experienced tics like my daughter, I'd love to hear about it and thanks for reading.
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