Guest guest Posted November 29, 2003 Report Share Posted November 29, 2003 Hi to everyone again,,, called me back and we had a nice chat. She sounded so good and says she has no pancreas pain at all, but the pain from the surgery. She thinks she will be a mild diabetic, but is so thrilled she had this done. It truly is a miracle for the both of them and I am so happy their pain will be gone. I am sure there will be bad times for them both, but to know they are rid of the pancreas is wonderful news to me. thinks she will be there til the week before Christmas. She says she will have no computer when she gets home. Hers crashed and she will be with out one. So we have exchanged home numbers and I intend to keep in touch with them both. Now if only I could talk my daughter into having this done. Chances are slim on that and I have told myself that I cannot dwell on it. Best wishes to you all, Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2006 Report Share Posted June 12, 2006 Hi Alison, Welcome back. We are fairly new to SCD, almost 5 months now, so I don't have a lot of answers for you but the biggest one was him getting illegals at home. Have you considered having your family go SCD? There is 3 adults and 2 children in our home and I do not know how I would do it if we were not all following SCD. My 5 yr old who is the one who we are doing SCD for also raged. I agree it is very frightening to see the anger and agression one 5 yr old can have when out of control. It has been well worth it for our family to all be following the diet and then I don't have to wonder and constantly be on guard at home for him getting into something that can disrupt the whole process. I home school so don't have to contend with the school system but I do contend with our childrens church twice a week. I do get pretty irritated with them more because of their attitude about the life style that we have chosen to follow. There is the attitude in some that it shouldn't have to be followed quite so strictly. The thing is they don't see our children 3 hrs after an illegal has been consumed. I am constantly talking, watching and teaching them in little suttle ways and sometimes not so little nor suttle. Will be praying for you. Sandy M. Whole family SCD in support of 5 yr old who raged. We still have an occational 'small' rage if he gets into something but nothing like we were dealling with even 3 months ago. > > Hi my name is Alison & we are back again after 4 months off scd. What > a disaster, my son, Jack 6yo with asd has gotten so bad my husband > wanted me to come back. We left after the 3 month regression that he > never came out of. At the time I thought he was becoming sensitive to > foods he was on & looked at diets such as the special foods diet which > makes some strong claims about autism & recovery. However looking > back I see things slightly differently, school was a problem with many > illegals getting into Jack much of which they didn't tell me about. > My qu's are > > 1) Once your through the die off reactions how do you deal with school > & the problems of foods & cravings the kids are still having. > > 2) Do you do the inro diet until the die off rxn has settled down- > otherwise I can't tell if he is ok with new foods introduced. > > 3)My son is non stopping screaming for foods such as pear jelly as he > can't have grapes, but at the exclusion of all other foods. I have not > let him have to much as I'm sure this is not good for his gut bugs. So > in this case do you restrict this or should he eat a lot if he likes? > > 4) jACK'S die off rxn started fairly quick & very intense, non- stop > screaming & seeking of foods, I have to guard the kitchen from him. > Also he has returned to lots of self aggression- The rage in one small > boy is frightening. > > 5)Is there a need for rotation of foods in scd, or is that just when > using other grain containg diets. Also my son has a problem with > salicylates & phenols & has started to sniff & seek out plastics, > perfumes etc. We have removed much of this & use non toxic cleaners > etc.Anyone elses experiences here would be very helpful. > > Thanks very much > Alison Singleton (mum to Jack scd day3) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2006 Report Share Posted June 13, 2006 > > Hi Alison, > > You asked: > > <<Once your through the die off reactions how do you deal with school > & the problems of foods & cravings the kids are still having>> > > That's a tough one. I think you have to make the diet, and all the rules pertaining to it, part of his IEP (if you are in the U.S.?? Otherwise, I don't know if you have legal paperwork regarding his school program that you are allowed to participate in the drafting of). > > That way the staff must make sure he eats ONLY what you send... and it's legally binding if they don't. It might not prevent every single possible infraction, but you have a better chance of holding their feet to the fire. > > Another thing that might help is if you could possibly go in to present something... very short and to the point... to the kids. Let them know how important this way of eating is for your son to get better... and how they can help him stick to it. > > I did a similar presentation to my daughter's regular education 2nd grade classroom (she is only with them part of the day) regarding her seizures. I explained simply what goes on in her brain and what a seizure might look like... and what they could do to help (remain calm, call the teacher over, stay with Katera, etc.). The kids are very happy to help, if they are given some knowledge on their level. > > <<Do you do the inro diet until the die off rxn has settled down- > otherwise I can't tell if he is ok with new foods introduced.>> > > Most people do not stay on intro alone. Die-off can go on for weeks. But, you're right to intro just a few new foods... possibly green beans, zucchini, ripe bananas.... and then wait. > > <<My son is non stopping screaming for foods such as pear jelly as he > can't have grapes, but at the exclusion of all other foods. I have not > let him have to much as I'm sure this is not good for his gut bugs. So > in this case do you restrict this or should he eat a lot if he likes?>> > > Hmmmm.... well, it certainly *could* be that it's the gut bugs making him cry out for some kind of sweet food.... because they are desperate to survive. I know that some children must have more restriction of the sweet fruits, due to yeast concerns, but this is not technically part of SCD, so it's really up to the individual. > > <<jACK'S die off rxn started fairly quick & very intense, non-stop screaming & seeking of foods, I have to guard the kitchen from him. Also he has returned to lots of self aggression- The rage in one small > boy is frightening.>> > > It will definitely be CRITICAL that you make sure he is not sneaking food. Locks on the pantry doors if necessary! Otherwise, you'll never make headway. > > Rotation of foods is not part of SCD.... again, that would be up to you, if you feel this is necessary for him. > > Patti > > Thanks for your responses, it is so vital to have support during the first stages of this diet. Jack has settled down a little at the moment & his speech has been wonderful with many 8 word sentences. This is huge for him & us. Charcoal has been wonderful as have epsom salt baths. We are moving back to New Zealand in 5 weeks & I feel so much more confident that we will all survive the flight as well as the move now that we are getting back on track. Along road ahead I know but a huge leap in the right direction. Thanks again Alison Singleton (mum to Jack, 6yo asd & scd day 5) Western Australia soon to be in New Zealand > > > Quote Link to comment Share on other sites More sharing options...
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