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Posts posted by JennyC

  1. My daughter is on Feingold so we do the chemical free thing. A week or so ago someone asked about all natural syrup for snow cones and I gave an answer that I hadnt tested ( I stated that) but that I thought would work. Well my daughter had an adenoidectomy today so I got to try it out for myself and my gosh it works well! So I wanted to share it since it came out tasting good.



    Snow cones in a cup w/flavored simple syrup


    1C Diluted Juice (the more diluted the less intense the flavor)

    1C Sugar


    Bring to a boil, boil 1 min, turn heat down and simmer for 5 minutes. Let cool and then place in an air tight container and refrigerate.


    When you are ready to make the snow cones get out your handy blender or food processor (I used the food processor) and grate until its the consistency of snow. Put in bowl, pour syrup over it and enjoy!

  2. I would say that if you sent him to his room and he was okay in a few minutes that maybe your DH does have something there. I dont think its nonsense or that your son is making any of it up, I also dont think that he should be punished BUT if sending him to his room works then maybe you should do that not as a punishment but as a way for him to have a time out, deal with it himself and get ahold of himself. Im sure there will be times when he cant do it by himself but I think trying to let him learn to cope might be helpful life tool for him....although Im sure heartbreaking at times for you as you watch him struggle.

  3. My younger sons PANDAS started when he was young also...he was not yet 3. It went away for two years and reared its ugly head again when he was almost 5.


    How old is he now? Does he still have issues? Is it possible for it to go away and never come back? Our neuro is doing the strep titer blood test but Im kind of unsure about it. I mean the first tics were a couple years ago and then they came back a year ago and sort of lingered so I dont know if they would show up or not.

  4. Yes, it is normal for PANDAS tics to go away and come back. There is no set time for how long they could go away for...it could be days, months, years, etc. PANDAS tics can come back when there is anything stimulating their immune system.



    Okay thanks for that info. Our first neurologist just told us she had a chronic tic disorder and over time through other things we realized he wasnt a great doctor and switched. This new neurologist thinks that it may be PANDAS because it started when she was so young, less then two years old and then it went away for some time and can back.

  5. I cant say Im totally comfortable spiking the tics but if it will give them some insight into whats going on with her then its worth it. She is hooked up to an EEG so they will be able to literally see what is going on in her brain when she has a tic. Ive had her watching TV all morning and nothing. She is sleep deprived (docs orders). She has been off dairy so long that she wont drink the milk so Im going to go to the store and see if I can find some chocolate syrup that she can have (she is on Feingold so that may be tough)

  6. My daughter was taken off of dairy by her gastro doc, while dairy didnt help her gastrointestinal symptoms it reduced her tics by a ton. She had it a couple times since then and ticked each time. Now she is hooked up to a 48 hour EEG and the doc said to try to induce her seizures and tics....well this kid has had sooo much cheese and ice cream and is not ticking!! Whats going on? I actually havent seen any tics out of her in a week or so, this new doc is thinking pandas and I know very little about pandas so is it normal for tics to go away for awhile and come back?

  7. My daughter had small tics when she was as young as one but at the time I didnt realize what they were. When she was 2 1/2 she woke up one day and just started blinking this prolonged blink with both eyes, within a day she was ticking with both arms and within a week her legs were going too. Taking her off of dairy has drastically reduced her tics.

  8. Myrose


    You could make a simple syrup but instead of using water and sugar try all natural juice and sugar.


    This is a simple sugar recipe I use and it uses water so its just really sweet syrup. Ive never tried using fruit juice but I dont see why it wouldnt work.


    1 cup water

    1 cup sugar


    Bring water and sugar to a boil and boil until sugar is dissolved. Cool to room temperature and transfer to a jar. Store in a cool pantry or refrigerate.



  9. My daughter has what was labeled a tic disoder last August but her new neurologist said she is very young for a tic disorder (2.5 years when it started) and he is thinking maybe a strep infection caused it. I cant remember if she was sick or not in the time before her tics started, there was a lot going on in our lives then. He is doing blood tests now but my question is, if it was almost a year ago that she had an infection can it be seen in her blood now??

  10. To the mom of the 12 month old.


    One thing Id like to add is that I really really think you should ask your doctor about melatonin and whatever other alternative treatments you would like to use. Your child is very young and I know I only speak for myself on this board but Im not sure giving a child that young melatonin or anything else is a very good idea without consulting a doctor. Its such a little body to put stuff into , you never know how something could react in someone so young, you know?

  11. Curious if the epilepsy med helps to control her tics, do you notice? or do you attribute that to other things? Man, you are brave about the dairy knowing what it will do! How are the tics going now? I am guessing you are finding good success with the Feingold? Are you doing gluten free too, or no?





    I think the meds help the tics a little bit, not much but a bit. Yeah I know, I was really torn between putting her back on dairy for the EEG but in the end I figure when she has a tic it will show up on the reading and thats more information to help the neurologist. Its going to break my heart but knowing that it may help in the end is what cinched my decision really. Tics are actually doing really really well, she goes some days with out any (well any that I see) some days she only has a couple, some days she has a good deal. She goes through the whole waxing and waning thing. Feingold has been a complete success, she still has some issues with her activity level , night terrors still happen and she of course still has sensory issues but its all far less severe than it was. She has stopped chewing on herself and furniture, she isnt as clumsy anymore, her tantrums are now age appropriate and they dont last hours like they did. I am amazed by the difference. We can tell on days when she has gotten something she isnt supposed to, sometimes we slip and forget to check something and we pay for it for days! No we arent doing gluten free, I started to try it and then we had another appointment with her gastro doc. She had tested negative for celiac and he said that while you can be sensitive to gluten and not be celiac its pretty rare. Im happy with the way things are for now and I dont want to change any more of her diet. She is already casein free and chemical free!


    Thanks for asking Faith :huh:

  12. Right now she is on Miralax and benefiber for severe constipation, she is also on Trileptal for epilepsy but this new doctor isnt so sure she has epilepsy, he says the first episode sounds like a seizure but her other staring episodes he isnt sure about, they could be something else. So he has lowered her med dose a bit and he is going to do a 48 hour ambulatory EEG which will also help him figure out the tics so while they are doing the EEG I am going to put her back on dairy because they induce her tics big time.

  13. Sorry I havent been around in awhile, lots of doctors appointments. We finally found a great neurologist who confirmed our belief that she isnt actually autistic as the last neuro said she was. This new guy also isnt sure she is epileptic so he is doing an ambulatory 2 day EEG. He is also looking into her tics because he feels she was really young when she first got them and thinks there must be a reason for them other then just a tic disorder, something about maybe a strep infection at one point? Anyway, I just wanted to stop in and give you an update! Thanks to those who checked up on me, it was very much appreciated.

  14. Here's a good recipe... hope your daughter likes it!.






    Gluten Free Bread


    3 large eggs


    1 2/3 cups water


    3 tbsp vegetable oil


    1 tsp apple cider vinegar


    2 tsp honey or molasses or combo of both



    3 ¼ cups rice flour (or 2 cups brown and 1 ¼ cup white)


    2 tsp egg replacer


    2 tsp xantham gum


    1 ½ tsp salt (optional)


    ½ cup skim milk powder


    2 ½ tsp breadmaker yeast


    Combine wet ingredients in bread maker pan.


    In separate bowl, use a whisk to combine all dry ingredients except yeast.


    Add dry ingredients to wet, but do not combine. Place pan in breadmaker.


    Make a well in dry ingredients and add yeast.




    · Works well without skim milk, although doesn’t rise quite as high


    · Omit skim milk and replace with 1/3 cup of yoghurt, using only 1 1/3 cups of water.


    · Add about a tablespoon of nuts and seeds (flax, sesame, sunflower)- whole or ground



    Note: Xantham gum (acts as a binding agent) and egg replacer (acts as a rising agent) are available from health food shops or some larger grocery stores.


    Do you know what size loaf it makes, I have to enter it into my breadmaker in order to make it work, the sizes I have to choose from are in pounds 1, 1.5, or 2

  15. Hi everyone


    I need a gluten free casein free bread machine recipe, the one I have in my bread makers book calls for dry milk and I dont think there is a good substitute for it.




    I don't have a recipe (but would love to get hold of one) but I can tell you that the Bobs Red Mill GF Wonderful Homemade bread mix is good. Sam is not having any milk, eggs, wheat, cheese or rice at the moment (based on IgG test results) so I was happy to find this. We use soy milk or oat milk, and Ener-G egg replacer in it. Sam loves it. It costs around $4 for a pack which makes one loaf. I noticed that Amazon sell it in bulk too.




    Thanks sue, yup Ive seen the bread mix. Im looking for a bread machine recipe in hopes that it will be cheaper than the bread mix itself. This kid will go through a loaf a day if you let her!

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