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Everything posted by ssonheim

  1. Nose is a bit better. It's been raining. I really think it's bothering her not just psychologically but I think it's a sensory tic. I got some books at the library to read, they aren't here yet. Magnesium isn't helping
  2. For anyone still reading I am looking into sensory tics. She has a few symptoms of spd... sensitive to seams in socks, aggressive tantrums out of the blue, very ticklish... sensitive to loud noises. Nothing too serious or that interferes with school.
  3. Interesting. My daughter is very sensitive to touch ( I wouldn't say hyper sensitive because she hasn't had meltdowns over tags ) but she hates sock seams and discomfort in her eyes shoulders and nose has turned into several month long tics until the symptoms completely disappear. However I can't get a diagnosis and I feel like I am crazy trying to figure this out. She has a messy room, a temper, pretty awesome at school (top of her class with little effort) and only minor behavior issues (relating to temper) . She has lots of friends and doesn't really show much anxiety or OCD in any way. Could hyper sensitive tics be tourettic OCD?
  4. Ent had no answers. Stumped. Slightly dry but no sign of infection or allergies. So frustrated
  5. And I just cleaned it out with nasal spray again and it's a tiny bit bloody on one side and we found more dirt! So strange because she has been asleep since we last did the spray! Perplexing
  6. Last night it was really bad. My husband gave her a saline spray in her nose and it immediately got about 50-75 % better. There was a bunch of gray dusty snot on the tissue, she had been digging in the dirt a day ago and I guess it went to her nasal passages. She's much better this morning. Still itchy but better. It drives me crazy because I don't know how to help her or what is going on.
  7. Hi! They turned into a cold and came down but are still there. She wiggles her nose like a bunny. All day long. I can see its red and she can tell me exactly where it itches. Just inside her nostrils. Thinking of seeing an ent this week. I don't know. She eats a standard diet and way too much junk food. I'm sure candida could be an issue.
  8. My daughter is 7 years old now. We had about 6-9 months of total tic free behavior. She was a bit scrunchy of her nose around Christmas but it was accompanied by a cold and vanished within 2 weeks. The nasal steroid spray seemed to help, so we have given her a squirt every night for the past year. Her new ped who is pandas friendly thinks they are allergies. two weeks ago I picked her up from school and she complained of a scratchy itchy nose. She was rubbing it every 5 seconds. Well, she started bunny twitching again, I took her into the ped and he found a yeast infection with pustules. We did some topical cream which made it feel a bit better but she bunny nose twitches every 5-20 seconds. All day no breaks. He was leaning toward impetigo when we last went and we are doing an antibacterial ointment. she now has a cold two weeks later and is doing a full bunny nose twitch with open mouth every 5-20 seconds. where are we now? She's started to chew her lower lip too -it's a scabby mess. whenever she feels a slight irritation she turns it into a tic. She even does it in super light sleep. Is this OCD? Hypersensitivity? shes not sensitive usually to tags on shirts (occasionally) but sensitive to the seams on her sock toes. Has been for years. where do we go from here? How do I desensitize her so she is not so overwhelmed by these feelings that turn into tics? do we have hope that this will go away or should I assume this is the beginning of OCD or Tourette's ? one doctor said tics, another doctor said just allergies. I don't know what to think. Is any of this normal? I just want her to get better. I thought we were done with this but it's back.
  9. So we had a few great days and now the hard blinking is back since yesterday. one of her bottom molars are breaking through. I read the threads here and also everywhere I could find. I read somewhere that impacted teeth cause blinking. I don't think they are impacted, but I think this is interesting. Perhaps she is just overly sensitive to all of these changes happening. Is there anything to do, or should I just ignore, as, this, too shall pass?
  10. Ok so I am busy treating my daughters allergies and shrinking her turbinates. Her wiggly nose and sniff tics have subsided dramatically with her nasal spray. Since she lost her first tooth 10 days ago her hard blinking eye tics have subsided. She had a loose tooth for about 2-3 weeks prior- it coincided with the blinking tic. The worst day was the day it fell out and it got better after that. Since reading about these two things, I noted that the trigeminal nerve controls chewing and also eye movements. When she eats or brushes her teeth, her hard blinking tic comes back. Not really when drinking. I don't think it could be allergies because she starts hard blinking with the first bite. No matter what she is eating, even just lettuce. When I brush her teeth it seems particularly bad. Not on one side or area - just the touch of the toothbrush on her teeth stimulates a blinking tic "reflex" ? Thoughts?? Anyone else noticed this? I am starting to think her sniffing tic and wiggly nose tics were caused by swollen turbinates. Her eye blinking was caused by the loose tooth and sensations in her mouth. (trigeminal nerve stimulation) This still points back to whenever something in her face is bothering her- she turns it into a tic. Are these even tics? Or oversensitivity issues? Pandas? I am not a medical professional and I have no idea what is going on. I will know better once her next tooth is loose. Where do I go from here? ENT? Dentist? Ophthalmologist? Neurologist? pediatrician? Ignore it because it will go away when she's done losing teeth?
  11. I think he thinks her nose is irritated (bunny nose twitch) and eyes are dry (hard blinking) so treating the first source of the allergy (swelling in turbinates) will reduce tics ( whether they are real or not) I don't think he thinks she has PANDAS so there would not be inflammation in her brain. I don't know at all. I have seen them reduce but they were waning before her first appointment with him. I haven't seen the shoulder shrugging in about a month and that was when she had a too high pillow. And it went away when we got a small one. I think that she's overreacting to sensations suddenly. I am not sure anymore....
  12. She wasnt shoulder rolling (and hasn't in about a month.) I did mention it. I think he thinks she is hard blinking and wiggling her nose due to allergies. He said it would take 7-10 days for the nasal steroids to start working. First ped said they were tics. I am so frustrated and upset. I don't know whether to seek a third opinion soon. I will see what happens in a week. We are on day 2 of steroid nasal spray and there is no difference yet.
  13. So, pediatrician said that my daughter had tics and they were caused by my Type A personality (that was pretty much what he told me.) And to ignore and they would go away. This wasn't okay for me , so yesterday, I saw a specific PANDAS pediatrician who said he wasn't sure if they were tics and he thought it was allergies. Most of them are in her nose and mouth. Said her turbinates were swollen. So we are treating with nasal steroids. Does any of this make sense? Do tics parade as allergies? She is waning and wasnt as severe for pediatrician 2 as she was for pediatrician 1. I believe she has allergies, and that her turbinates are swollen. Would they cause a 5 year old to blink super hard (he said eyes are dry, but ophthalmologist didnt say this) and wiggle her nose day and night? 5-20 times an hour all day long for 2 months? He said she didn't fit the PANDAS profile. I don't think he thinks they are tics. I am so confused and frustrated. Hoping they are allergies and we will reevaluate in a month.
  14. My daughter has had quite a few of these for the past years. From scratching a mosquito bite /or a wasp bite. We've always been puzzled because DS14, DH and I have never had one and my daughter has had 3-4 in the past 2 years. My husband had cellulitis in his leg recently (unknown origin). Would this point to a flare in my daughter over the past few weeks? He took a round of antibiotics. I was told that strep or staph causes these infections.
  15. That's a good plan. she's only 5. Dad will be picking up DS who's 14 during her appointment from school so he won't be there. I wish he would be. Good idea for next time though!
  16. I haven't seen her. I am curious if anyone has seen her here- it's interesting that Storch and Toufexis take my insurance. I didn't realize this. we are at the beginning of the journey, I don't even know if we have PANDAS yet.
  17. Talking about the tics makes them worse for my daughter. She's already mad and self conscious about them. How do you visit a doctor to discuss tics in detail without upsetting your child? Should I bring headphones and let her watch a movie on my phone?
  18. Listening in, I am in Tampa. I saw Megan Toufexis is covered by my insurance too. She's in Lakeland though, not at USF St Pete with Tanya Murphy
  19. Some updates, haven't seen a PANDAS doctor yet. Hoping for an appointment soon. Ibuprofen makes tics reduce by at least 50%. Tiredness is the biggest trigger, and they gain as the day rolls on. Eating triggers them. She lost her very first tooth yesterday. Wondering if that triggered this 2 months of tics. Today is our best day in a couple of weeks. Ibuprofen only works if I give it to her first thing in the morning. Otherwise it doesn't seem to reduce. Some of the blinking must be irritating and as she does it more, the worse it feels. I talked to my parents and husband's parents. Zero tic disorders or Tourettes. Even second cousins and distant family. As she gets more exhausted, her tics become longer more frequent and sometimes complex. Like last night, it was blinking hard followed by a rabbit nose twitch. Over and over. does that sound pretty severe for a transient tic? I think it really could be PANDAS. Will continue to update.
  20. Tonight she asked me if she could "roll her eyes" I asked her why, and she said, because I like to. And did a few times. Then started making fart noises with her tongue. This is absolutely crazy. I just don't know where to begin. I read through the book today and there is absolutely no pattern. There could be mold at home or at school. There could be stress at school. She could be stressed by my husbands new work schedule. She's had a lot of separation anxiety lately. I just feel like crying. I have no idea what to do. Hopefully it will just be a quick fix with antibiotics.
  21. It's so hard on us as parents. I am thankful it's not cancer. My hairstylist's 2 year old daughter was diagnosed with liver cancer a year ago. I try to remember that it could be a lot worse. It's just hard to watch and not know how it's going to proceed. Just trying to take it day by day. Not have regrets about not noticing this or that is difficult. It's hard to know about PANDAS- you can't blame yourself! I love my pediatrician but he pretty much told me it was our Type A manifesting itself and I need to just lay off. He snickered about PANDAS. My husband totally agreed with him. I just wonder, Why not run some tests? seriously? I reminded them both that she had Strep at Halloween and the pharmacy did not mix the solution correctly- I was 3 doses short. I had to go back and demand 3 more doses of that pink amoxicillin stuff. It was not "by the book" at all. In the last couple of days I was trying to scrape enough together!! I was so mad about it. What did they put in there? How could you possibly mix it 3 days short? sigh.........
  22. I was thinking tics were ASD related because it looks a bit like stimming? I don't really know. Has anyone had a child that does it all day every day- basically 9 AM til 7 PM with no more than 20 seconds between tics? They increase to every 5-10 seconds by the end of the day It's just so awful to watch. Should I be concerned about that frequency? I guess that concerns me more than the tic itself. I just requested an appointment with Dr. Friedmeyer. I am hoping he can run some tests to say for sure.
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