dan_and_maureen

Hi folks, Just a brief update on our progress... We haven't yet received our Feingold materials, but have eliminated food colorings and preservatives in the meantime. We have several natural food stores within walking distance, so it has become a nice family outing. We have seen how food colorings have increased his tics, but we haven't seen a reduction by eliminating them. We are very ready to be patient and are aware, thanks to you posters, of the need to wait to see results. This weekend I cleaned every crevice of Dylan's room, but we need to get rid of his carpeting. He has a nice sized HEPA air cleaner in there, though. We will, hopefully soon, be employing the help of a mold removal specialist to deal with that issue. We are getting in touch with an Environmental practice this week and hope they can help with some of our needs. I have another couple of questions for you all: How did you deal with explaining TS to your child? In particular, how did you deal with the self-consciousness that accompanies TS, especially with a younger child? Dylan does not get made fun of, people (kids, neighbors who don't know) just ask him why he makes all those faces and is always moving his body around unexpectedly, etc. - I can see his awareness about himself changing; any good advice to keep him feeling ok with himself? He seems to be in a very bad, argumentative mood for the past week. We think it's either a slight detox, or perhaps he's experiencing a feeling of anger or unfairness at his condition? How do you handle birthday parties? Dylan has 2 this weekend and we're trying to come up with a plan for him. Besides the obvious, like bringing your own snacks, treats, drinks-are there any methods or strategies you use to help your child not feel outcast, or like he's missing out on what the other kids get to do? Again, thanks for the advice and encouragement. I have to be honest, I feel that this group is our lifeline right now. You have made us feel welcome, like we're not alone, and much more at ease in this difficult time. Dan and Maureen

Hi everyone, Dylan's RAST test and all other screenings came back at "normal" levels. My wife and I have decided to try the Feingold diet; we have read here and elsewhere of it's successes. We have been keeping a rough food diary (how detailed do you make it?), but we haven't been able to see any triggers except for Hi-C that had food coloring and M&Ms. He was ticcing pretty badly after those items. Since then, we have eliminated food dye from his diet. We don't expect immediate results, and in fact some of you mentioned a period of "detox" where the tics get worse; can you elaborate? Today, Dylan's tics are really bad; full body jerking, arms raising every 3-4 seconds. I was doing some arts and crafts with him and he couldn't use scissors or a crayon. My wife and I were in tears after he went to bed. Our ped. is aggressively trying to get us an appointment with our neurologist. Tonight Maureen and I were asking ourselves the question, "what's the real emergency?" We felt very anxious for Dylan tonight, but what is the neurologist going to tell us? We already know he wants to put Dylan on Tenex (please, anyone with Tenex experience share your info), but other than that, why are we so adamant in seeing the neurologist? I mean, we already know that the only conventional ways to treat it are meds, and from my conversation with the neuro a few weeks agao, he gave no indication of gravitating toward any unconventional or experimental treatments. Maureen and I have sketched out a direction for treatment. It still seems strange to sort of be "self prescribing" a "home remedy" for him without leadership from a physician. Do any of you have any experience with a good doctor or practice who can assist in mapping out a plan for you or your kids? We have fortunately been in touch with Sheila Rogers and she suggested searching for an affiliate from aaem.com. Maybe this is the type of physician(s) we are seeking. -We have all back issues of Latitudes and are reading what we can. -We may consult with a practice in our area that specializes in Environmental medicine. -We have ordered the materials and are going to try the Feingold diet first. -This weekend, we're cleaning his room and putting our HEPA air cleaner in there. Another question we had for all of you was; how long should we wait before our next move? We are considering mold removal-we have a lot in the basement, also possibly in wallboard or on wood. (The house is a 150 year old rowhome in the city) I don't want to call in the Cavalry until we've seen the results of the diet change, but still am unsure of how long to wait. Thank you all so much. Again, we appreciate the openness and caring you have all shown in your posts. Dan and Maureen