I'd like to know how do you keep Jed on the gf/cf diet;Do you have other children?, is the rest of the family eating the same?if not, does he ask for what others are eating? can you only get the gf/cf products via internet?
It is not easy. Not only is he on the gf/cf diet he has all the allergies. I try and make things that we all can eat especially at dinner. For him I go to the health food stores and get snacks that he likes (ie. pretzels, crackers, almond milk, bread, donuts and other stuff). This stuff is very expensive. Pretzels alone are $1.79 a bag for just a very small bag.
I just tell Jed that he cannot have other things because they will make him sick and pretty much he accepts that now. I'm not saying it's easy but you just have to set your mind to it and do it.
A few minutes ago, I received a message from healthboards saying I was banned from posting. I'm not sure if I should not of posted those websites. So if you quit hearing from me this is the reason. I hope not I enjoy talking to you all.
Thanks for sharing your stories with us. We can learn from each other experiences. It sounds like your son has similar health issues as my son. Did you cure the leaky gut? Doe's he have allergies? I noticed you took him off corn and other products. What type test have you ran on him? (hair analysis, blood, urine) I know questions, questions and more questions. I have ran all of the above tests. Just curious of your experiences vs. mine.
No, I started the diet before the allergy testing. They did the skin ***** testing on him. They also did the candida test and a comprehensive metabolic panel. The skin ***** is where they ***** the skin several times in different spots and put a drop of allergy extract (ie. milk, potatoes, wheat and so on). They wait about 15 minutes and return to observe the skin to see if there is a raised bump (kind of like a mosquito bite). If it has raised this means there is a allergic reaction. They rate it depending on how big the raised spot is. The bigger the spot the more severe allegic reaction. Are you thinking about having him tested?
I have also had hair analysis done on him twice to detect mercury. There was no mercury detected but other toxic metals were detected. Such as aluminum & arsenic. I had a organic acid test done by Great Plain Labs. This test-tests for yeast, amino acids, fatty acids, bacteria and others. I also had a urinary peptide test done to see if he was able to digest gluten and casein properly. This test came back normal and was pretty expensive.
[This message has been edited by RachelK (edited 04-13-2002).]
Hi, no testing, its just his results were so incredible our pediatrician and psychiatrist both supported the diet after they saw the incredible results-begining with speach and eye contact! I mean geez his verbal and nonverbal IQ even went up 10 points thats very unusual! I think it was always high, its just he was so autistic he refused to communicate with anyone but me. I learned about the diet in parents magazine while he was home tutored (back after paxil when school refused to allow him to return and was looking for resdiential placement) like the mom in the article, I had nothing to loose and every thing to gain, it was exactly two years ago! He used to wake the whole the household up at the crack of dawn daily hoot'n, howl, chirp'n bouncing- our little tigger- on day three of diet, I woke at 9 am to dead silence I was terrified that he done another bizzare chemical experiment (like when he tried to get the energy out of batteries with a can opener caught that one before he started) only I thought god, he's killed himself as I dashed out of living room I found him quietly disassembling legos he had rigidly been banishing to shelves after assembling them once as per instructions that each came with- he'd refused to make them any other way once he discovered legos came with instructions- for the last year and a half- That day he had them delightfully scattered accross the living room floor and was building of all things and escaped prision ship it was 3 feet long with about 20 guys lined up on it and he said they were going thruough a timewarp space continu-um thing to a safe moon over there ! I just said Jay look what you did! He said Hey I rememeber how to play this way! He felt so good it was months before he was really tempted to cheat on the diet! - on weekends I would narrow his foods down to just rice and then introduce something with sodium nitrate or corn and oh my goodness it was dejavu' it didnt take long at all to figure out what foods had to go- and the behaviors were a very strong negative reienforcer for me to follow the diet- even something as simple as hydrogenated oils and boom hes off- any corn products which by the way is often an unlisted non-caking ingredient in salt and he losses incontinance. Now even the teachers and ot all say the difference is incredible! The last diet infraction he had he wripped is bedroom door off- oops.Well gotta go more latter! When I first started the foods we began that weekend with I found out latter weren't even completely GF/CF- it was rice dream milk and rice crispies! After a while even little infractions were noticable but in the begining is was a great transitional food. -Mary
It's kind of hard at first. Gluten and casein is hidden under alot of different names. How is your bill at the health food stores? Mine is huge! Just went there today and spent $70.00 on just a few snack stuff.
It's great that your son has you for a mother. Keep up the good work.
Hi, my bill is pretty high too, I also purchase allzyme digestive enzyme there as well, he takes that with each med dose because the meds contain traces of milk. the enzyme is like $23 and last almost a month. I also found a soy cyber chip in apple, garlic and plain that is half and half rice/soy chip. They're so good, my daughter begs me to buy them for her too. He snacks on pistachios at lunch and tolerates them and walnuts as well, peanuts are legumes and they are nuts so they're a differant family! Yeah! Any way, they deliver UPS right to your door for $14 a case (of 12!) Now I got our local walmart to carry them and they charge the same amount if I break it down. Pretty cool Jay lost 15# in the last 6 month snackin on them which was ok by me, each bag has 14 grms of protien and only 3 grms of fat! The risperedal used to make him raving hungry and he would binge and binge. I am just so pleased that hes been able to wear boys size fourteens all school year. He used to be slims right up until the tenex or clonidine I can't remember. Then they pulled him off and slimmed right back down to slims, and then they started the risperdial and he gained an easy 20 pounds for the first time in his life. He would eat 4 hamburges than whine and yell and demand more food even thoough he couldn't posssible be hungry. I finally stopped the last dose of risperidal because the hunger kept him a wake longer than the sedative effect the risperdal should have had. Now he only takes it with the ritilin so they balance each other out. He also started the diet several months after the risperidal and then he started growing, and lost alot of the sensory stimulation behaviors- one of the high lights of my life this year when he repeatedly told me he was certain he had a kidney infection again and again (something like my kidney has diareah) , the doctor checked it out and he was fine, eventually what I discovered was that the first time he had actually felt inner sensation/pain/cramping was with dirareah, and then a bladder infection a year ago- he mixes up kidney/bladder - and...... drum roll his bladder nerves had finally developed and could tell him his bladder was full! Really full! Yeah! He didn't get even a patch of frostbite this year and no nasty feet infections, all of his limbs appear to have almost normal sensation now! I think he may have been starving/malnurished before the diet because like most he had limited his diet to milk/wheat products and wasn't able to process the protiens. Also an interesting thing our new counsellor shared and I wonder if any of you had this experience - at birth he was technically failure to thrive for almost two weeks, I was allowed to take him home in five days after the jaundice as long as I drove 15 miles daily to have him weighed but he simply refused to breast feed or grow. Finally I was exhausted I fed him 24/7 left-right-left-right and he just wouldn't suck. (also I had sucessfully breast feed my first!) I gave in and purchased formula on a saturday-at the end of the second week. The doctors office was closed on weekends, the nurse read me the riot act on monday saying I could not bottle feed until he started gaining and I said I already had! She scowled and weighed him and for the first time scince the jaundice subsided he had gained almost a pound! Yeah! So she stopped scowling, with in a month the ped switched him to soy because he had exzema behind his ears. Also all over his face! Yuk.. Ok back to now and the new counsellor, she said that failure to thrive babies often look like jay, I have never heard that - or ever really considered him a failure to thrive baby-I thought that was more from alcohol or drugs ,I did neather, and he gained steadly after those two weeks, and although he didnt cuddle he seemed comfortable and content, thank god that because he woke every two hours and I tried so hard to breast feed those first two weeks I just slipped into the habit of sleeping with him on my chest all night for several months (single mom can do! smile) The counsellor said that may be the single prevailing factor that helped him develop as well as he has! Attachment disorder is frequently diagnosied in failure to thrive babies, it had crossed my mind when he was doing the paxil and I didnt understand the side effects of paxil, but other than that, scince the diet he is so a mama's boy, he has just finally developed to the point where he will play for an hour with legos alone now, before the diet he played for hours hours and hours alone. With the paxil he was just aggressive and destructive and angry angry angry! I used to lay with him for 2 hours at bedtime reading and talking and its killing me but I know as he develops emotionally at the speed of sound he is ready to learn more independence which is why I can write such long posts evey night. He can see me from his room and yet quietly amuzes himself with gameboy or the max steel guys for an hour to calm down and get into the rest mode. I so miss that time with him though, and working 40 hours a week doest leave alot of other spare time after chores- I still cuddle and talk but its more like 10-15 minutes. Or sometimes we watch a show, I am so a survivor fan, we cuddle on the couch together. I have stopped reading because he can read himself but he won't if he knows I will! Its got to be consistent, he still has his rigid quirks, its either all or nothing for him. Ok, well hes on his last scavenger hunt in the kitchen so I am for the abbreviated cuddle! -Mary
ok, well that was short! He kept begggggggggginnnnnnnnn to watch acme prime time hour! I said nooooooooo,stop beggggggnnnn or I will get up. I have seen wil E Coyote and acme and acme anything is junk food for the brain. He assured me you can learn all kinds of stuff from acme- like the little chick with the rooster, some times he does chemistry! (great jsut what I need more chemistry) and he says, "what about when bugs does shakespear,thats educational! He had me there,) stuck to my gun though and got up when he contimued to whine, so far so good, silence. smile -Bye!
Have you tried the Blue Diamond Almond milk and the Blue Diamond almond Nut Thins? These products are real good. The Nut Thins taste just like Tostito chips. They also come in pecan and hazelnut. Jed loves these. He will sit and eat a whole box if I let him. Have you tried any of the Kinnikinnick products. These are really really good. They have sandwich bread, donuts, pizza dough, bagels, cinnamon rolls and other stuff. So far their stuff has been the best that I've tried. Jed seems to like them too. I'm kind of lucky..we have a health food store that carries alot of stuff for gf/cf diets because they have meetings for parents with children with autism at their store. Anyway, you asked if our kids thrived as babies. Jed did just fine. He was always a cranky baby thou. I thought I was going to die. He had 2 sets of tubes b4 the age of 2. The first set at 7 months. Even after the first set, we still continued to have problems. He received his 2nd set right at 2. He finally (knock on wood) grew out of this by age 3. I also think that if I was aware of the milk allergy that he has he would not of had as many as he did. Anyway, He is doing good. He has been on Zoloft for about 3 or 4 day with the combination of paxil until next wednesday. Then he will be on zoloft only. I think I already am seeing a change for the better. I hope so. Some of the things he was asking to do b4 paxil he is not asking to do now. Like he was asking to color and write his name and sitting with me and spelling some words. At that time he was on zoloft. He refuses to do this without a fight now. I hope this will change within the month. It usually takes about a month to get the full affect of a SSRI. Keep your fingers crossed for me.
kay, my fingers are crossed! I haven't heard of any of those products but for us they would have to also be corn free- these days corn seems an even bigger enemy than the others- will you check them when you have time, if they are I forgot to mention, we are also yeast free, (maybe my healthfood store would order them) I know you can treat the whole yeast thing, but the docs around here look at you like your a nut case if you even suggest why the diet it works, they don't wannna know nothing about nothing as long as the kid stays out psych hospitals. Theres no way they'd treat for digestive tract yeast. All this and they havent even given me a referal to the pediatric digestive specialist. I am going to ask for one though, our old psychiatrist left the area, he was the only one who understood the why to the diet. the nearest pediatric digestive specialist is almost a two hour drive and I only know that he exists because of all irony, my older child appears to have a sp? hialtal hernea thing happening and has always had symptoms of irritable bowel syndrome, interesting enough so do I and my sister. Her kids the oldest has severe learning disabilities, the middle boy is OD and way worst than Jay, he just got out of a 5 week stay at a pscy hospital and the youngest girl- completely unable to tolerate milk products- hives asthma reaction two them and very hyper and unfocused in structured learning situations. Coincidence? I think not. Still my sister looks at me like I am insane when I suggest she conssider trying the GF/CF diet for even a vaction to see if there is a difference. Oh well, atleast the youngest is caisen free. i have discovered that climetidine is an incredible antihistimine for diet infractions, stops the red ear hyper stuff immediately. I also hope to do some natural chelating some day soon, but am waiting for all the gray baby fillings to come out of jays teeth. Talk to ya soon , Mary
Jed is also off of corn. He is allergic to corn. Neither of these products (nut thins and almond milk) have corn in them. Nut thin ingredients are: rice flour, almond, potato starch, expeller pressed safflower oil, salt, natural flavors. Almond milk ingredients: water, evaporated cane juice, almonds, tricalcium phosphate (calcium source), vanilla extract, sea salt, potassium citrate (stabilizer) carrageenan, soy lecithin, D-alpha tocopherol (vitamin E), viatmin A palamitate, vitamin D2. Again, I think he will really enjoy these products. They are made by blue diamond.
The mercury test were done by two different labs. One was done by doctors data. The second was done by Trace Elelments, Inc. Both were hair analysis. If I remember correctly, you have to have a doctor order for these tests. Your pediatrician should do it with out problems (at least mine did). The 2nd test was order by the nutristionist. The Urinary peptide test for casein and gluten was done by The Great Plains Laboratory. All were done thru the mail.
All of the products that I have from kinnikinnick have yeast. I'm not saying they all do but the ones I have do. Also, have you tried acidophilus and/or any probiotics? I give these to Jed twice a day per his nutritionist. This adds good bacteria back into the body to try and help replace some of the bad. Just a thought.
[This message has been edited by RachelK (edited 04-14-2002).]