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  1. Hi Jenny, If those are the ratios needed, I would think that you could just use: 2 cups white rice flour 2/3 cups potato starch 1/3 cup tapioca flour This would make 3 cups flours. Hope I answered the question I would think as long as you stuck to that ratio you could double or triple the amounts easily. Heather
  2. Kim - thank you for bumping this thread up - and thank you for the links!!!! I am going to print both out so I can read carefully. I am starting a file of articles like this - as I try to piece the puzzle together - I really, really appreciate you thinking of my son!!!! Speaking of - I now see the OCD component with tourettes big time in my son. He is playing baseball and I nearly cried tonight watching him play. Jumping on and off the plate, shoulder shrugging, measuring his feet with his bat before batting, throwing his mitt - it just mushroomed tonight. I am in the process of talking with naturopaths and homeopaths and I don't know which way to go. I talked to a naturopath today in our area (I'm about an hour from SF - in the central valley of No. California). She sounded great but said that I could expect to pay $300-500 per month on supplements. Do you all pay that much? And more importantly, how can I get my pill hating kid to take that much? I feel so overwhelmed right now. Sorry - I am rambling. It feels like my sweet boy has been overtaken with anxiety and compulsions and oh - this is tough. Heather
  3. That is so promising - thank you so much for posting this!!! My son has frontal lobe seizure activity due to his brain surgery. And I know the tourettes is connected though still trying to figure out the connection in a way that would allow me to truly be heard by his doctors. Heather
  4. Let's see, I live in CA and have all my life. I teach geometry at one of our local high schools and have dream hours - 7 to 11 a.m. - which allows me to be a mom in the afternoon (definitely the more worrisome, yet rewarding, job!) I have started yoga which astounds me. I am not a yoga person but my son's patient care coordinator at Children's recommended it to me when she saw I was on emotional overload. I love, love, love it - even though I will probably always remain a beginner. Makes me feel great. I love to read and I love to write. I just read "Eat, Pray, Love" and now want to travel. I am a sometimes seller on eBay. My oldest son has ulcerative colitis and it became a way to pay for his supplements. I love to go to garage sales and seem to have a strong sense of finding things that will sell. Now that I am looking for supplements for Mr. 8 yr old - I guess I'll continue ebaying! I have a sweet husband who plays endless hours of sports with all our boys and wears them out thoroughly (I am not an outdoors person so I appreciate this beyond measure). I have three beautiful, loving, and always interesting, boys. I am a good listener and I have some absolutely dear friends. I feel like, despite some hard things happening, I have been very fortunate in my life. Heather
  5. Cheri, The fact that your son's fistula has healed is a testimony to your hard work in researching what helps him - I know many who deal with fistulizing crohns and the healing rate does not seem to be high. So much I read about my younger makes me take a second look at my oldest. I have heard story after story about turmeric so I may have to convince Erik to add yet one more thing to the list of supplements! Do you have your son on any medications for crohns? Erik is on asacol and MTX and I would eventually love him off of those - of course MTX is the thing I worry most about. I am curious about candida cure? What is that? I know Erik's GI tract is still out of sync and I would love the good bacteria to reestablish control. Tami, I was thinking that I needed to donate the food - thank you for the reminder Sorry your little guy is allergic to almonds!!!! Heather
  6. Cheri, My oldest son (age 18) has IBD - though most likely has ulcerative colitis. He just had prometheus testing done and I am still waiting to hear the results to determine the likelihood that it is colitis and not crohns as a more definitive diagnosis will help guide his treatment plan should he become ill in the future. We have never tried the Maker's Diet, though did try the Specific Carbohydrate Diet last summer. A year before that, Erik's inflammation rate was high and he had obvious swelling and pain in his joints (roved - he would literally wake up in the morning with a new joint swollen and hot to the touch - it was just awful for him). With great trepidation, and mainly to get off the dreaded prednisone (great short term but many IBD kids remain on it for extended periods which can lead to all sorts of problems), Erik started a low dose of methotrexate (17.5 mg once per week). Inflammation dropped and Erik's life began again so it was positive. At the same time, I struggled with him being on that and started to research supplements/natural treatment. I belong to an online support group for parents of kids with IBD - Dragonpack. Cheri, have you ever been on it? Lots of information and support. At the time of Erik's worst symptoms there was an RN on board who literally saved her daughter from having her colon removed using supplements, changing diet, etc. After conversing with this mom and talking with Erik's doctors, we started him on Thorne basic nutrients II, zinc, purified fish oil, VSL #3 - a probiotic tested for UC, and a few other things. His sed rate - inflammation marker - dropped to a 3 (it was in the 80's at it's worst). Erik started college this year and changed from the Thornes to a multivitamin and I know cut back other things including the probiotic. His sed rate has crept back to 20 and he has asked me to order all the supplements for him again and I am so glad. We did like the specific carbohydrate diet - I went on it with him and the first week was very hard as I am sure we were detoxing from gluten and sugar. But it got better and I felt great. We didn't stick with it though and now as I try to clean up my younger son's diet I wish we had. There is so much junk in our pantry that I need to just toss. If anyone is interested we found a great supplier for almond flour - and made lots of muffins and even pancakes with it. I am kind of rambling now - sorry about that! I jsut have to remind myself that it took a long time to figure out how to help Erik with his IBD. I am absolutely overwhelmed with tourettes right now but hopefully I'l get to the same place of being able to help my youngest . Heather
  7. Thank you, Kelly. I am printing out your response and I will talk with my son's doctors tomorrow! Heather
  8. My 8 yr old (recently diagnosed with tourettes) developed a fever over the weekend. By Monday his throat was sore - I took him to the pediatrician on Tuesday who did a swab test for strep - it was positive. My son is now on amoxicillin for 10 days. Background - I had a sinus infection a few weeks ago and his older brother developed an ear infection last week so certainly something passing between us. Still - given my son has strep I worry. His vocal tics seem to be increasing - more low grunting, especially when he is sitting still (like when I'm reading to him), and what seems to be a kind of a chewing motion with nothing in his mouth. I am still so new with all of this that I don't even know what questions to ask. PANDAS came up for me when the doctor said strep and wanted to find out from all of you what I should be looking for and what questions to ask of the doctors. Thank you! Heather
  9. Hi Caryn, My oldest was checked for celiac about a year ago. The test came back negative but last summer we tried the specific carbohydrate diet which avoids gluten. His sed rate went from elevated to a 3!!! He is now a freshman at UC Davis and at last check he sed rate was a 20. He loves dorm food. As a concession to me, he stays away from lactose which we found really irrated his bowels. My son’s colitis, I am absolutely convinced, came from long term antibiotic use for acne. To this day anyone says antibiotics and I cringe. Of course I know antibiotics are hugely important for many things but I wish we had never okayed it for acne use. Like you, we’ve encouraged a low sugar diet for my oldest. I tell him we “don’t want to feed the bad bacteria”. And a good probiotic is so important with GI issues. And Tami, Thank you for getting excited along with me - I am so relieved that the MRI was fine!!!! I bought Kids Callm yesterday and I’ll bring it to the appt on Friday. I’ll let you know how it goes. Thanks again! Heather
  10. Hi and thank you all for your warm welcome No history of tic disorders - though we do have extended family members (namely 2 of my cousins) who have OCD. I agree that the brain tumor and having tourettes are more than coincidental. My son is supposed to have an appt on Friday with the neurologist but I think I will call and cancel as we have other doctor appts in the afternoon and I know that the neurologist only wanted to see us back if the tics worsened. Good news is my son's MRI last week was stable - apparently no sign of tumor regrowth. It has now been almost 18 mos and no tumor growth is an absolute miracle. Immediately following surgery the neurosurgeon suggested chemotherapy to eradicate any stray cells that might be cancerous. The neuro-oncologist vetoed this saying he was very reluctant to give a child chemo who may not need it. The neuro-oncologist regulates my son's care and I will talk to him more about proceeding in the way outlined on this board and in Sheila's book. We see him Friday afternoon and I plan on talking with him - just have to get my questions and requests in place. Thank you for the support in taking things slowly - that makes sense to me. My oldest (age 18) has ulcerative colitis and we are now advocates of a healthy diet as well as supplements. My oldest takes probiotics (VSL #3#), zinc, fish oil, and Thorne multivitamins. So I am used to some of the supplements but not specifically those for tics/tourettes. I will learn BTW - giving my son epsom salt baths led to me taking my own epsom salt baths. I cannot believe how soothing they are - I sleep so well after taking one. Think about it moms - the stress of having to be with all of this every day takes it's toll. So glad I found this board Many, many thanks to all of you! Heather
  11. Hi Tami and thank you so much for responding. Yes it was 2006 - I think I have 7's on my mind since he was 7 yrs old. He was on steroids only for the two days prior to the surgery and not after. Yes, you're right - I had forgotten about the antibiotics but I remember that he was on them during his hospital stay (about 10 days total). I'll have to ask what he had been placed on. Heather
  12. HI, My name is Heather - my 8 1/2 yr old son was diagnosed a few months back with mild tourettes. Backing up, my son started to have what we thought were mild transient tics when he was 6 or so. He had a forced cough that wouldn't go away, then a soft grunt (which he still does as he falls asleep or listens to us read him a book). September of 2007, when he was 7 yrs old. he had emergency surgery to remove an optic pathway tumor. Surgeon cut through left frontal lobe to get to the tumor. Tumor was completely resected - pathology report though was inconclusive. Surgeon suspected an optic glioma or astrocytoma but we still don't know. My son has MRI's often (now every 4 months) to moniter that all remains clear. In fact he has one this Thursday - please keep him in your thoughts. After surgery, my son's tics seemed to disappear. Then the grunt returned along with speech interjections (not sure if these are tics but he adds "uhs" between words - sometimes frequently, sometimes barely noticeable. Last March he started to do head tossing and eye rolling - all to the left side. An EEG showed right frontal lobe seizure activity during sleep though no seizures have occurred. Neurologist told us that tics are centered in the basal ganglia and so the tics don't appear to be related to the surgery. I have been reading Sheila Roger's book though, and frontal lobe abnormalities in ts was mentioned. I did some reading when the head tossing/eye rolling started and started my son on epsom salt baths which I believe has helped (knock on wood - I am now a superstitious mom I think!). He is no longer doing the eye rolling or head tossing - he did go through an episode of eye blinking after a very stressful playdate. The eye blinking lasted several days and I see it now and again though not as frequently as I saw it initially. I am so GRATEFUL to Sheila and to this board - I have learned a lot just reading posts in this past week. I am going to talk with my son's doctor about the Kids Calm, especially since magnesium seems to help him. I emailed with Sheila Rogers (she wanted to make sure I had received her book - there was no record of shipment - how great is she to check!). I wrote her back saying we had received it and told her about my son. She said that, given his history, she might start with the amino acid test so I am looking into that. I look forward to being a part of this board Heather
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