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JennyC

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Posts posted by JennyC

  1. Isa sees a pediatric neurologist and she has the same type of thing but its been going on for over a year, she keeps one main tic which is her arms but her other change form. The doc calls hers Chronic Multi Focal Tic disorder. Thats interesting that they have two different terms when they sound so similar, Im going to have to check that out, gotta love google.

  2. I find it funny that your pediatrician diagnosed it as a transient motor tic yet said he may have it for life. If your child has it for life than its not a transient tics, transient tics are the ones that go away hence the name-transient.

     

    If you arent happy with your childs doc then switch for sure!!

  3. With Isa and dairy I saw changes within the first week I had her off of it. Her tics reduced dramatically and the purple circles were gone. The purple circles have come back but her tics are still less, I can tell when she has had something with a dairy product in it by how much she tics. If you havent seen any changes taking dairy away maybe dairy isnt his problem?

  4. How many of you have your kids on this diet? Did it work? How long did it take for you to see results? What was your childs behavior like before the diet? After?

     

    Sorry to ask so many questions but Im trying to keep my kid from being pickled by all the meds that they want to put her on lol.

  5. If you are getting him off of foods with artificial colors, flavors and additives then it sounds like you are already starting to do an elimination diet :huh: Take him off of one thing at a time, if you take him off of a few different things at once and see a change in him you wont know exactly which of things was the problem in the first place. Also keep a diary of your childs behaviors, I didnt do this and find myself not remembering exactly how much she was tic ing or how her behavior was a month ago as compared to now, your mind kind of plays tricks on you. A lot of these ladies have far more experience than I do. Im actually a little suprised that no one else responded to your post yet. When they do, prepare for a TON of great info, it can be overwhelming though.

     

     

    quote name='ilovedogs' date='Jan 22 2008, 09:54 AM' post='19945']

    I haven't really gotten to the point of wanting to do elimination diets with him, probably b/c he only has minor tics right now and they don't bother him. If they get worse or change into vocal tics I will probably start looking into diet. Right now I'm focusing on getting him off of any foods with artificial colors, flavors, additives, etc. We were already a pretty healthy family ie: we never ate at McDonalds, don't eat cheetos or doritos or twinkies(my son doesn't even know what a Twinkie tastes like :angry: ) I had ds on Juice Plus as a supplement for quite a while but have taken him off b/c I'm going to be starting to limit his salicylates and JP is made with fruit, etc. That's why I'm looking for recommendations of supplements. I want to find stuff that's free and clear of fruits like oranges, grapes, and apples, etc.

    JennyC: I'm glad that you figured out that casein was a problem for your daughter. I'm slowly finding out that I have to be a good researcher and investigator now. The problem I have is that I'm great at researching a plan, I'm just terrible at implementing it. I could use a little encouragement in that area!!!

     

     

     

     

     

     

     

     

     

     

    Well I cant help you with the doc thing but no not all tics are TS. There are transient tics which go away, chronic tic disorder where they last more than 6 months and wax and wane, usually decreases as they enter adult hood. I think there is another kind too but I dont remember. To have TS you have to have at least 1 motor tic and 1 vocal tic (they dont have to happen at the same time) for at least a year although Ive read some info that has said 6 months.

     

    My daughter Isa was diagnosed with Chronic Multi focal Tic Disorder (so several different tics that are a chronic condition) back in Sept. The doc asked us to keep an eye out for vocal tics but said she may just have a tic disorder alone. Right now it looks like she is starting with vocal tics.

     

    I know this is an extremely scary time, I remember how scared I was, I feared for her future, being made fun of etc.

     

    We had to take Isa off of Dairy for other medical reasons and what we saw was a HUGE decrease in her tics, seems like she has a problem with Casein (the protein found in dairy), I know some of the other moms on the board have seen changes in doing this with their children. So Isa is off of cows milk and onto soy milk (goats milk has the protein), off of cheese (some soy cheese also has the protein), we use smart balance in place of butter. As far as I know eggs are okay.

     

    Sorry didnt mean to rant. I know alot of the other parents on the board can be an amazing source of information for you.

  6. Well I cant help you with the doc thing but no not all tics are TS. There are transient tics which go away, chronic tic disorder where they last more than 6 months and wax and wane, usually decreases as they enter adult hood. I think there is another kind too but I dont remember. To have TS you have to have at least 1 motor tic and 1 vocal tic (they dont have to happen at the same time) for at least a year although Ive read some info that has said 6 months.

     

    My daughter Isa was diagnosed with Chronic Multi focal Tic Disorder (so several different tics that are a chronic condition) back in Sept. The doc asked us to keep an eye out for vocal tics but said she may just have a tic disorder alone. Right now it looks like she is starting with vocal tics.

     

    I know this is an extremely scary time, I remember how scared I was, I feared for her future, being made fun of etc.

     

    We had to take Isa off of Dairy for other medical reasons and what we saw was a HUGE decrease in her tics, seems like she has a problem with Casein (the protein found in dairy), I know some of the other moms on the board have seen changes in doing this with their children. So Isa is off of cows milk and onto soy milk (goats milk has the protein), off of cheese (some soy cheese also has the protein), we use smart balance in place of butter. As far as I know eggs are okay.

     

    Sorry didnt mean to rant. I know alot of the other parents on the board can be an amazing source of information for you.

  7. Mary

     

    I wish I had some advice to give you, I just want to let you know that you arent alone. My daughter is almost 3 and has a tic disorder and she also suffers from nightmares or night terrors as some call them. She doesnt get up and walk around but she will sit up in her bed with her eyes wide open, sometimes pointing and she will just cry this terrified cry and nothing consoles her.

     

    Maybe the muscle twitches are his body trying to act out whatever he is dreaming when he is sleeping?

     

    I really wish I could be of help but I wanted to write to you because I know it feels frustrating when you are waiting for an answer and no one responds right away, sometimes it feels good just to have your situation and fears acknowledged. I hope someone else can chime in with some solid advice or information. In the meantime, we are here for you.

     

    Jenny

  8. AUGH its so hard with such a young child to decipher tics. If she already had a full diagnoses I really wouldnt be worried about what is a tic and what isnt. But right now she is diagnosed with just a tic disorder and the doc wanted us to let him know if she started with any vocal tics but gosh I cant figure out what is and what isnt. (as seen with my Beep Beep post)

     

    She has started blowing rapsberries which she used to do for fun or when she was mad but now she will be sitting quietly watching TV and suddenly blow a raspberry and then look at me and say sorry (cause she knows thats not proper behavior in this house)

     

    Is anyone else this confused with their kids??

  9. We see a neurologist her general practitioner is the one who referred us to him. We really dont have any other options. I can look into a DAN doctor with grants but we cant even afford a sliding scale. This sucks. Sorry if that offends anyone but it does.

  10. Yeah it was a good 6 months before I realized that she had been having tics, it took obvious tics to make me look back and see that she had been having other tics for longer than we thought.

     

    Good luck with our doc haha. I video taped her when she was having a bad bought of tics so I could show him (this was our first appt) She never did tic in his office and he didnt even care to see the video , just went on what he was asking and what I was answering, I actually had to make him watch the video. I had thought going in that a doctor would be very interested in actually seeing what was going on rather than just hearing about it.

     

    I know, I know, I can hear you all yelling GET ANOTHER DOCTOR lol. With our insurance situation right now thats not possible. Now that it seems she had a seizure he seems to be taking us a little more seriously although I also think that is because I brought my husband with me to the next appt.

  11. My daughter has started beeping at me. Im not sure if its a vocal tic or she is just being weird and its a kid thing (she is almost 3) she goes "beep beep" in a certain way when she wants to tell me something or wants to show me something. She says beep beep in a different, louder, more singing way when she is excited....what do you all think? Is it worth mentioning to the doc (she only has a tic disorder as of yet, not dx of Tourette's)

  12. She has small tics now but nothing like she did when she came off of dairy, it only took about a week to see a huge reduction in tics.

     

    Yes I would describe her as hyperactive. No she doesnt get many processed foods, I love to cook so most of the stuff I make is from scratch. She does drink a lot of juice but they are 100% juice and I still water them down because she is so young and drinks so much.

     

    I have thought about seeing a DAN doctor but we are dead broke to be honest.

  13. Did anyone feel that way in the first week of the GF diet?? Seriously, Im wondering why am I doing this, am I doing it because Im going overboard, maybe I didnt really need to in the first place. Her tics were under control with casein out of her diet so why did I start this?? Her test came back negative, she is thriving, she isnt complaining of belly pain other than when she is constipated....should I just stop? Am I just getting carried away??

  14. Isa has been severely constipated ever since she was started on table food at about 9 months. She is growing just fine though. She does have a big bloated belly. She was always a really really unhappy baby, crying ALL the time! Finally this fall we went to see a gastroenterologist (cant spell that word!) and he tested her for a bunch of stuff. Celiac came back negative as well as food allergies but he asked us to take her off of milk and we did which did help a little but her tics drastically reduced so she stays off of dairy now.

     

    First they do a blood test and if that comes back positive then they do a biopsy.

     

    Isa is speaking in full sentences and has been for awhile. The only supplement we give her is viactiv (which has milk in it!) to replace the vitamins she isnt getting from Dairy.

     

    I honestly dont think she has symptoms of celiac disease. Maybe a couple like the bloated belly but I really dont think thats it. The reason that I took her off of gluten is because from what Ive read it seems like casein sensitive kids are also gluten sensitive. So basically Im just taking her off of it for a month or so to see if there are any changes in her. If not then I know she isnt gluten sensitive and wont wonder about it anymore.

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