kpt

Brink- If you choose to bake with agave, you need to reduce your baking temperature. I think it's by 25 degrees, but I'll double check for you. It's really mild and has a honey consistency- it can be used in anything you might use honey, but it can burn at higher temperatures. I hope you are able to find Fruit Sweet- I can't get it here any more, but I think you can order from Wax Orchard's website. I really liked the taste of it and my boys always ate the cookies without asking what was wrong with them! Good luck to you and your son!

Hi Brink- When you say you're using raw sugar, I am assumming you mean turbinado or "Sugar in the Raw"- they are not unrefined sugars, just less so than white sugar. Agave nectar is a good alternative to sugar- it keeps glucose levels more stable. Also, there's a product called Fruit Sweet which is basically a very concentrated fruit juice combination. It's all natural. I took my oldest son off of refined sugar for awhile, and these two products were saviors. There is a cookbook by a baker named Mani Niall that has really good baked goods, even birthday quality cakes Just might help with at least the sugar sensitivity. Best wishes to you. We are having some tough behaviors right now, too and struggling to identify his triggers. I hope you see some improvement soon! Kristin

Hi Michele- I hope you hang in there with all of the changes you're having to make The GFCF diet is really hard- I had Jack CF for about 6 months with no noticeable change at all, never made it to totally GF- but I wish I could have stuck it out. I had very little support from family members- it's sort of hard to get your child gluten free when your husband comes home with a donut or soft pretzels as treats for the kids! There are some enzymes that can help with small slip-ups, but that's when you are already following the diet. Do you have a Trader Joe's near you? They have a list of GFCF foods in their store- it's actually quite long. Kinnikinnic is a brand I've heard good things about- you could do a search online. George's makes a good GF brownie, and Van's makes really good mini-waffles- my boys both prefer the GFCF version to the regular ones. Ian's has good chicken nuggets, too. Check out Autism Web's forum (www.autismweb.com) for some good tips on following the diet, including a 10 week plan to ease yourself (and Andrew) into it. Just do a search and you'll come up with all sorts of info! Good news- McDonald's will sell just the toy! I think it's $1.50, but that could save you some headaches down the road. Maybe a good motivator to try some new foods. Good luck with everything and I hope you see some improvements!! I am also stressing about the upcoming school year and hoping that a new batch of kids will e accepting of my guy and his differences. Take care! Kristin

Hi Michele! Jack is actually on no medication at the moment, and has never been on any other than for periodic asthma flare-ups. We have to be really careful with even asthma meds, because he has a very strong reaction to anything with any type of steroid. I feel like the school is pushing for meds for ADHD, of course they cannot come right out and say that, but we've had enough evaluations for me to catch on The main problem in school is that quite honestly whatever it is that Jack does, be it a tic or stim, is actually pleasant for him. It's not rapid fire, it's more like the relaxation technique where you tense parts of your body for 10 seconds and then release. It's calming to him. There are times when he starts up, and I know he can't control it, but there's no incentive to, because he says it makes his tummy feel better and helps him think. He had a great teacher this year, but she said there were times it was really hard to pull him out of it. So even though he is very bright, at various points of the year he would start to fall behind in his work. Just yesterday it occurred to me that his worst period was just after winter break, at which point illness was rampant in his school. I was so glad he never got strep when his best friend had it about three times. Maybe it just showed up differently in him? We tried OT for a long time- because he did have sensory issues as a young boy and we hoped these were related. We went dairy free for about 6 months, I used to really regulate sugars, colors and preservatives. Other than making him healthier overall, the dietary stuff didn't do anything for the tic. I haven't checked corn, soy, gluten- I know I should, but the task seems overwhelming and I can't seem to get everyone in my family to buy into dietary changes. He has had this every day since he was 4 months old- there has never been a day he hasn't "jigged" (his term other than when he has a fever. As soon as the fever breaks- it's back, which is how we can tell he's better. I don't care about the label at all, I would like to find just one dr. who has any clue as to what to do to help and doesn't think I'm nuts. It's nice talking to you, too! Thanks for your response. Kristin

Chemar- Thanks so much for your reply! I feel energized to meet with the dr. next week . I went through Jack's baby book and saw that around the time we noticed him beginning his movements he had been treated for 2 different "infections". I had not at the time written down any more info. than that, so I will be contacting the old pediatrician to see if I can get more info. Thanks again! I appreciate it. Kristin

Chemar and Michele- Thank you both for your replies. We've been relocated twice since Jack was a baby- I'll have to go back and track down more detailed medical records to see if there is any correlation. This has been a long road for us, especially because the response I usually get is "I don't know why he's doing that, but it seems unusual." Then it's usually suggested that he's trying to get attention. Given that he started at 4 months- I'm having a hard time buying that explanation. Do either of you know if you can have PANDAS without regularly getting obvious strep infections? This past year many of Jack's friends seemed to get strep repeatedly, but he never had any of the usual strep symptoms. Looking back though, the time when he seemed to be having the most trouble was pretty much around the same time his friends were sick. I'm probably grasping for straws, but we're headed to a new dr. next week and I'm hoping for any ideas beyond what's already been explored. Michele- Did the EEG and CAT scan show anything for your son? Jack had an EEG at 2, but it was negative. We've not done a CAT scan. We are also on daily probiotics, multivitamins and Omega 3's (which definitely help him), as well as magnesium, b complex and zinc. He's a trooper- never questions me because bedtime has always been like pharmacy time for him! We also notice a link to preservatives and color- especially color. Thanks again so much for your replies! Kristin

Hi everyone- My son is now 7 and has had what I believe is a tic since he was approximately 4 months old. Does anyone have any info. on babies with tics? At 4 months (maybe earlier, but noticed at 4mths) Jack started pulling his arms up into his body and making a grimace whenever he was really happy or excited. At 2 he added pacing to the other movements. It seems to be a pleasant thing for him, so maybe it's more of a stim? Now he mostly just does it when he is very happy, excited or really tired- but he will do it multiple times a day for up to 10 minutes at a time if he isn't interrupted. I have yet to find a doctor that has helped and until recently the movements haven't been that big of a deal for him academically or socially, but they are now interferring with Jack's ability to get school work done. The school sent home ADHD paperwork to give to the pediatrician, but the attention issues seem to be more of a result of the tic, and no one seems to have any idea of why it's happening. We've been to a variety of regular pediatricians, a neurologist, developmental pediatrician, OT's, PT's, and no one has had any idea as to what is happening. Any guidance? Thanks- Kristin