ashley

Thank you so much for posting your notes!! Does anyone know when the videos will be available or how to find them?

Pr40, why avoid tomatoes?

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

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?

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 . . .

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!

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?

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!

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!

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!

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.

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?

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.....

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.

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???