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ashley

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Everything posted by ashley

  1. Thank you so much for posting your notes!! Does anyone know when the videos will be available or how to find them?
  2. https://www.youtube.com/channel/UCfQ-mNMg5c0hIQMiR-ZQ_xA There are 2 videos up so far at the above link - one from Dr. Nancy O'Hara's talk about Lyme and the other from the doctor's breakfast. I found the doctor's breakfast to be really helpful. The link below is to the opening remarks and Dr. Swedo's presentation. https://www.youtube.com/watch?v=kvTFiV0R1HM
  3. Thank you, sss, your story helps a lot! If the dairy clears from the system that quickly, then perhaps experimenting there would be easiest. Also, are there things I should be looking for on labels that indicate hidden gluten?
  4. Thanks, smartyjones. That is very helpful information. My son is very small for his age (10yo, 53" and only weighs 53 pounds) and he has lost 3 pounds over the past 6 weeks on this diet. I'm worried, even though the pediatrician is not. I would just like to know if the GF/DF diet is helping or hurting at this point . . .
  5. I will not be there, but hope that someone will be able to take notes or make videos to share. I have found the videos from the NE Conference to be very helpful!
  6. Thanks, 3bmom. It has not been easy to eliminate gluten and dairy, especially since my son is vegetarian, but I do not think we will ever go fully back to our old ways. However, it is very hard for a 10 year old to say no to every birthday cake, etc. I have not been able to find information through old posts on reintroducing to try and figure out if something is really helping or not. I do know there are plenty of people on this board who say their children have gotten better without going gluten or dairy free. Surely there is someone before me who has eliminated and then done an experimental reintroduction?
  7. Has anyone experimented with adding gluten or dairy back into their child's diet to see if it is really making a difference? And if so, how did you do it? My DS has been totally gluten and diary free for 6 weeks and he is definitely doing better. BUT we don't know if he is doing better because of the antibiotics, the diet, or both. We would very much like to know if the diet is making a difference. I know with traditional allergy elimination we would flood his system with the possible offending food to see if there is any reaction, but I'm not sure with intolerances and inflammation if you would see a result quickly or if there would be a delay. Any advice would be greatly appreciated!
  8. Sleep issues have been one of my son's biggest problems and we too were prescribed clonidine (by neurologist.) It worked very well and absolutely saved us when we were in crisis, but at the urging of our pediatrician we switched him to melatonin and it has worked just as well!! I would definitely give it a try. My son also has restless leg problems at bedtime. The melatonin doesn't make him pass out the way the clonidine did, but it definitely helps him fall asleep and (most often) stay asleep. Our pediatrician did say we could redose if he woke up in the middle of the night. Hope it helps!
  9. Wow. Amyjoy that list absolutely terrifies me! I am printing it out and taking it to our next appointment though. I spoke with the pediatrician who had similar thoughts to pr40 in regards to testing - basically let's hit it with everything we've got because tests are expensive and may or may not actually give you any answers. We may revisit that issue pretty soon here though. In the mean time we have switched him from zith to omnicef and things seem to be stabilizing again. Finger crossed. I am definitely concerned about mold though. We live in a very warm and humid climate and I wouldn't be terribly surprised to find we have mold issues. The question is how to locate and eradicate them . . . so much research!
  10. I'm so sorry you are having a hard day, but so glad that you wrote this because I feel *exactly* the same way. All in all my son is doing well, and I know so many people are dealing with much worse, but it is SO hard trying to deal with this. I, too, find myself thinking that everything is a symptom. And I feel like there is no one I can talk to about it because my friends just don't understand. Anyway, I don't think it makes it any better, but I understand where you are coming from. Hang in there.
  11. Thanks for all of your responses. This is so hard, and I am so incredibly tired . . . but we will keep going and we will figure this out one way or another. Is there a comprehensive list somewhere of the testing we should be doing?
  12. Amyjoy, we haven't done any additional testing but maybe I need to request that. No one around him has been sick that we are aware of, other than seasonal allergies. He is on a daily allergy med and daily probiotic - how do I know if it is enough? Also an anti-fungal to combat yeast. I wish the doctor would call me back already.....
  13. My DS(10) has been on azithromycin since mid-January and on GFCF diet since early March. He made great progress from February to mid-March - his "bad thoughts" went away, all but one tic disappeared, we were able to take him off clonidine at night and replaced with melatonin to help him sleep. I was so optimistic I even signed him up for a week of sleep-away camp in June! But things started to creep back in starting March 17th and he has continued to decline, becoming more emotional volatile, tics have increased, several bouts of out of control hyper activity, and several nose bleeds. We tried to ignore what was happening, but yesterday he was once again afraid to be alone (even in the bathroom) and was terrified to sleep by himself, so we are clearly headed right back to where we were in January. Why is this happening??? Has the antibiotic stopped working? I have a call in to our pediatrician but feel so helpless and overwhelmed. Hoping someone might have some insight.
  14. I have nothing to offer in the way of help here, but hope that others will because I am dealing with the same issue with my 10 year old. I really thought things were getting better since starting antibiotics last month, but in the past week he has been out of control hyper and I have no idea how to handle it! His tics have intensified also. Is this a sign that the antibiotic is no longer working???
  15. That is great information, pr40! I have seen xanthan gum in lots of recipes but had no idea what it was for. I am looking for a super simple pizza crust recipe to make a thin, crispy crust. My regular flour recipe is nothing more than flour, water, salt, olive oil and yeast. But I'm guessing just swapping out the flour for GF flour won't work? Is adding xanthan gum all I would need to do? And where does one find xanthan gum anyway (what section of the grocery store?)
  16. dsmom, it really helps to know that it gets easier! Thank you!! And thanks to all for the advice - I definitely have a lot to learn!
  17. pr40, can you use coconut oil as a butter substitute in baking at a 1 to 1 ratio? That would make my life so much easier . . . We have been using rice and almond milk for the past week, but will try out coconut milk next week, especially if the fat content is higher. I hadn't really thought about that. Thank you!! And yes, while my son hasn't complained, I have definitely missed cheese!! We tried the Daiya brand in a recipe and were really pleased - it is dairy, gluten and soy free but melted really nicely. It gives me hope that we can get a fix of something "cheese-like" when we need it!
  18. We love the crunchy chickpeas, dasu! Hope your kids enjoy. We tried our first "mock" cheese last night, in a vegetable enchilada recipe, and were really pleasantly surprised! We used the Daiya brand which is dairy, gluten and soy free, and honestly liked it better in the recipe than the "real" version!
  19. Thanks, pr40. I understand your concern, but there are quite a few good plant-based sources of fat (avocado, olive oil, etc.) and he eats lots of eggs for B vitamins (plus a daily supplement.)
  20. Hi all - We started the whole family on a gluten, dairy and soy free diet this week and I swear I see changes in my son already! We are super excited BUT it has not been an easy switch, especially since my son (10) is a vegetarian. I'm hoping to get advice on your favorite GFCFSF brands, tricks, kid-friendly recipes, etc. I am blogging our recipes at http://feedingthefamily.wordpress.com and about our personal family story at http://fletcherandlola.wordpress.com Thanks in advance for your advice - I have so much to learn!!
  21. Thanks, cara. We have a followup appointment with the pediatrician next week and I will ask about the ALCAT testing. 3bmom, the more I learn about all of this the scarier and more overwhelming it gets. We do our best to buy mostly organic, but looks like we may need to step that process up and go 100% organic. Thanks for the advice.
  22. That is really encouraging. My son is in what we think is his 2nd episode. Had 1 episode of tics last year but no other symptoms that we recognized. Last month tics returned along with a host of other issues and he was diagnosed with PANDAS. Trying to educate myself as much as possible and this forum is immensely helpful. Thanks so much for your advice!
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