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  • NEW TO BOARD -Questions about DAN Dr, Vitamins, GFCF foods that kids like, lots more.

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    Old 06-19-2005, 07:19 PM   #1
    getsons4
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    NEW TO BOARD -Questions about DAN Dr, Vitamins, GFCF foods that kids like, lots more.

    Hi

    I have been viewing this board for several months now and have found it to be very beneficial. My son was diagnosed with Expressive Language Disorder last year. He however has sensory integration issues and autistic tendancies. The doctor at Kennedy Krieger Institute, Baltimore, MD did not feel that he was on the spectrum. We tend to agree but are still concerned with his language delay and the autistic tendancies, such as stimming, not sleeping, poor appetite. We recently removed dairy from his diet and over the last three to four weeks have seen some improvement. In addition, we met with a DAN doctor, Heartlight Healing Center, Columbia, MD, Dr. Pamela Compart. She was so impressive and suggested we run some blood and urine tests on Matt. I was wondering if anyone else had good luck with a DAN doctor. Matt will be four in September. He attends speech twice a week and OT twice a week. We use the Wilbarger Protocal Brushing and Deep Pressure Protocal each day and Theraputic Listening twice a day (Sonomas CD). Matt developed normally, met all the developmental milestones on time. I was orginally concerned about the MMR shot and the mercury, but they say that Matt was born (2001) and Mercury is no longer used in shots at that point. I then found out that the Flu shot which he received two or three years in a row did and still does have mercury in it. He was also on antibiotics for almost six consecutive months of his life with repeated bouts of strep throat (Tonsils/Adenoids removed last summer). Everything that I have read says that these two things alone can cause a regression is children. The DAN doctor tends to agree. She is going to originally stary him on the SupernuThera multi vitamin (powder form) without A&D. She did say that because of the high B's that it can hyperactivity in children. Has anyone's child had this sideefftct? I am also interested in othe Vitamins, such as Melatonin, Enzymes, Omega 3's, B-12 injections, Vitamin A, etc. If anyone has some experiece with vitamins I woud love to know how they worked for your child. I also would love to know more about the GFCF foods that kids like. My son loves pudding. I recently bought Soy pudding, YUK. I did read on one the message boards about the almond mile and that has been a success so far. I just bout the brown rice bread but have not tried it. Are there any specific food brands for breakfast, lunch and dinner that children like? How about snacks, chips. The ones I have bought taste awful. I asked the sales associate at the organic food store which ones the kids like best and she had no clue. Thanks in advance for all your help.

     
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    Old 06-19-2005, 08:39 PM   #2
    Sheronor
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    Re: NEW TO BOARD -Questions about DAN Dr, Vitamins, GFCF foods that kids like, lots more.

    I can help a little bit on the diet. Fritoes and tortilla chips are made out of corn - so the kids can eat those. Also, chex makes a corn chex cereal that is really good. If you buy the book, Special Diets for Special Kids, there is recipe for pudding in it. I've made it and my daugher likes it. Whole Foods has a soy pudding that she likes. I don't know the name, but it has a panda bear on the package.

     
    Old 06-19-2005, 09:17 PM   #3
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    Re: NEW TO BOARD -Questions about DAN Dr, Vitamins, GFCF foods that kids like, lots more.

    I can tell you my experience with Melatonin. My 7yr old autistic son was the best sleeper I ever had up until he was about 3yrs old. I always had to coax, bribe, fight, etc...my other kids (Now ages 22, 20 and 10) to go to bed when they were little, but my ASD son would put himself to bed. At about 3 years old he started staying up all night, litterally bouncing off the walls. After about a year of this I finally asked his developemental pediatrician and she recommended Melatonin. We found a liquid made by GNC that we could easily get him to drink in Almond Milk. It was a miracle! He would drink his cup about 8pm and put himself in bed by 8:30 with a "nite nite" and a smile. GNC stopped making the liquid form and now it's available in tablets or maybe also in either chewable or "melt away" (I can't remember which). We buy it at the local drug store in tablet form and just crush it with a pill crusher to put in his drink. It doesn't mix as well as the liquid, but it is still effective. We haven't had to increase the dose (always 1mg) and it continues to work. We've tested going without it and it's like night and day. I haven't really heard of any side affects from using it, but I'm always checking the internet to make sure nothing has developed. He seems to be fine, and we get to sleep! Good Luck.

     
    Old 06-22-2005, 10:30 PM   #4
    Lisa in Indiana
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    Re: NEW TO BOARD -Questions about DAN Dr, Vitamins, GFCF foods that kids like, lots more.

    We were GFCF for about 8 months and it is a full-time commitment. You can find many GFCF items at Trader Joe's or Wild Oats. Even regular grocery stores carry many items that are GFCF. If this is the route you want to pursue, then BEFORE you start, read Unraveling the Mysteries of Autism and PPD by Karyn Seroussi and Special Diets for Special Kids I & II by Lisa Lewis. These cover anything and everything you want to know about going GFCF.

    Now, having said that....GFCF is very expensive and very hard to follow. We introduced enzymes to our dd in December over Christmas break and here it is June....she can eat ANYTHING she wants as long as she has enzymes before hand. We order special enzymes made specifically for spectrum kids from Houston Nutraceuticals. These are truly amazing and have changed everything for my dd. It's the new frontier as far as I'm concerned and being GFCF may no longer be necessary at all. So, please research your options before diving into going GFCF.

    If you are interested in Enzymes, then you have GOT to read the book called Enzymes for Autism and other Neurological Conditions
    The Practical Guide for Digestive Enzymes and Better Behavior
    by Karen DeFelice. This book made all the gut issues finally make sense after reading dozens of other books. It was a Godsend as far as I am concerned, it has completely changed our lives. It was written by a mom of 2 autistic boys to the autistic mom and in terms that were so easy to understand. I would not know what to do without my copy. I got mine from ******.

    We also give dd Transfer Factor (which is cow's colostrum and egg yolk) this is meant to help repair and boost the immune system. BUT, and this is a huge BUT, it has been the single most biggest factor in promoting speech in her we have seen thus far. She has literally exploded with speech since being on it. So much so that her ST is being cut down to 2 days a week from 5. We order ours from 4Life.

    The only minerals she takes is a little calcium and zinc. Zinc BTW, helps promote a good night's sleep. Since being on the zinc, we rarely have night waking.

    Another thing that goes a long, long way is Epsom Salts baths. These have helped with meltdown issues tremendously. You can buy these anywhere, just good old Epsoms.

    You also mentioned something about mercury not being in your child's vaccine in 2001. This is not necessarily true. It had been order by the President for manufacturing companies to stop making them with Thimerasol, but not to destroy the bottles with the mercury still in them. So, in 2001, there was still a very good chance that your child DID receive a shot with mercury in it. You need to read about this further. Unlocking Autism would be a great start

    Ok, last B-12 shots I have read about and looked into for our dd, we are considering these. I read many good thing about them. There is a doctor in New Jersey that has dedicated much time and research to it's use. His name is James Neubrander, MD. Read about him...very interesting man.

    Hope this helps!
    Lisa

     
    Old 06-23-2005, 11:45 AM   #5
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    Re: NEW TO BOARD -Questions about DAN Dr, Vitamins, GFCF foods that kids like, lots m

    Lisa,
    that was a very interesting post. Did you really see a big difference with the enzymes? My nephew has just stated the GF/CF diet, and I wonder if I should try the enzymes. His bowels are a mess, and I wonder if the enzymes would help. Can you let me know the differences you've seen, and how long did it take to see the difference. Thanks!!!

     
    Old 06-23-2005, 01:35 PM   #6
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    Re: NEW TO BOARD -Questions about DAN Dr, Vitamins, GFCF foods that kids like, lots more.

    Lisa,
    I also found this very interesting. I just ordered a bunch of GFCF food online yesterday morning because I finally gave in and decided to give it a try. I have felt like such a bad Mommy for not trying it already but going to school full time and having a 4 yr old and 2 yr old (with autism) is just so overwhelming, not to mention all of the dr.'s appt.'s.

    My 2 yr. old had literally been living off of graham crackers and Carnation Instant Breakfast for months. Her OT has been working on feeding issues with us once a week but everytime she makes a little progress, she gets ANOTHER ear infection and we go back to square one again.

    We just started with a DAN! Dr. and she did say they would be adding enzymes soon but I know talks of the GFCF diet are coming so I figured I would get a jump start on it. All I ordered were different types of crackers and breads because that's ALL she eats right now.

    I wish I would have read your message earlier but I guess I'll give the crackers and bread a try

    Did your child have issues with what they liked to eat? And if so, do they still or are the enzymes helping?

    thanks for your post,
    Lisa

     
    Old 06-23-2005, 03:35 PM   #7
    Lisa in Indiana
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    Re: NEW TO BOARD -Questions about DAN Dr, Vitamins, GFCF foods that kids like, lots more.

    My dd was very self limited in what she would eat before. Kids that do this will most likely respond well to the GFCF Diet. I do think that cleaning up their diet is worth it, so don't give up on the diet just yet. I am just saying that in the very near future, it may not be a necessary step in the DAN! protocol. Most DAN! doc's recommend either going GFCF or SCD (specific carbohydrate). Both can help with leaky gut syndrome tremendously. Before going GFCF she would mainly eat chicken nuggets, fries, crackers, bread and cheese anything. Not much of a milk drinker per say, but ate TONS of cheese. We noticed a huge improvement with the removal of dairy. Wheat takes longer to eliminate, so it took longer to see results with that. Be careful with soy, as it can act a lot like wheat and cause just as much, if not more trouble. We used DariFree potatoe milk for her cereal and drinking. It is the tastiest by far...much better than soy or rice milk. You can order it online from Vance's.

    The kind of improvement we seen with enzyme usage were HUGE, really big. I am sure, like weight loss, not two stories will be the same. But, for us it was HUGE. I will give you an example: DD started developemental preschool last August. Her speech was unintelligible...she was echolalic and and mostly spoke in jargon or her own made up language. Can you imagine the frustration of not being able to relay to people you want something to eat or drinK? Can you say meltdown City?

    She did not speak one word (and I mean not one word from August 17th until January 5th at school). If you search under my posts, you can read about how worried I was about it. So anyway, we read about and researched the enzymes and decided to try them over the 3 weeks off for Christmas Break. On January 5th 2005, she went to school and walked into the classroom and said "Good morning, Mrs Trish, my name is Ivy and how are you today?" The teacher called me in tears and could not believe she spoke, let alone an entire sentence. And really after that day, she just took off. Shortly after that I heard her tell me for the first time that she loved me without being prompted to say so. She said it and hugged me and said it spontaneously. I cried all day over that one! She started to put on weight and look healthy, she started using imagination play, she became aware of pain and danger. She was aware and sensitive of her older sister for the first time. Her speech just took off. She went from not being understood at all to speaking full, complete and understandable sentences. We found she had a great sense of humor...I can keep going, but I am writing a book here it seems, lol!

    Since then we have looked into many other things such as the Transfer Factor (talk to your DAN doc's it's great stuff) that has also helped develop speech to the point that is almost caught up to peers in that aspect.

    Also, we still eat some foods that are GFCF only because she loves them now... like her special pretzels made by Ener-G and Tings (that are like Cheetos without the cheese and very tasty I might add). Kroger brand Corn Pops cereal are GFCF. So are Post Fruity Pebbles. We make our own GFCF Bread some weeks with a bread machine. But, with the enzymes we have much , much more freedom as to what we can eat. The only kids that enzymes probably won't help are true celiac's. If you are interested, please, please get the book I mentioned...it answers everything!

    HTH's
    Lisa

     
    Old 06-23-2005, 05:54 PM   #8
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    Re: NEW TO BOARD -Questions about DAN Dr, Vitamins, GFCF foods that kids like, lots m

    Wow Lisa,
    That is a great, great story!!! I got chills just reading it. I have already ordered that book, and am really excited about my nephew getting to the DAN doctor. He's getting close to the top of the list, hopefully within the month. I think 'll try that milk you suggested, as my nephew is on soy milk, and doesn't seem to be a fan of it. Thanks for the great posts!!!

     
    Old 06-25-2005, 01:14 PM   #9
    getsons4
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    Re: NEW TO BOARD -Questions about DAN Dr, Vitamins, GFCF foods that kids like, lots more.

    Hello

    Thank you to everyone for your advice and/or suggestions. Lisa - your post was of particular interest to me. I went to the 4Life website but I did not see the Transfer Factor for kids.....can you give me more information on how to acquire that. My DAN doctor did not mention that. Also, I had mentioned that I put Matt on the Almond milk, is the dairy free potato milk better tasting? I have not seen it. I went to a organic market called ROOTS when I was in Columbia, MD. I know that there is a Trader Joe's in Annapolis, MD and in Alexandria, VA. Could I get it there?

    Well, we did go to the DAN doctor and she gave me so much information, I wish I would have brought a tape recorder. My brain was overloaded by the time I left. She did give me lots of reading material and after a day or two I read through it all and our conversation came back to me.

    Her diagnosis/recommendations: She does not consider Matt as on the Spectrum but because he does have some autistic tendancies, that from a metabolicable stand point, she is going to treat him just as she would an autistic child. With that said, she order some blood work and gave us the kit to return to the Great Plains Lab for the urine test. After he takes the urine test (which will be Monday), I can start immiedately on TMG, and then after being on that for a few days with no side effects, I start him on the Super Nu Thera (without A&D). After being on that with no side effects, I start him on the Cod Liver Oil, and then a magnesium/sulfate cream (in place of Epson Salt Baths). We did discuss the enyzmes and she did give me a handout on enzymeaid. I am not sure when she will start this but I know that she plans on giving it to him in the near future. She also recommended the Casein (CF)portion of the GFCF diet and did not recommended me start him on the Gluten (GF) portion until after the blood work is in. She confirmed that the diet is very hard and that maybe we could use the Enzymeaid instead. He has such a limited diet almost exactly like Lisa's child.

    I will let you know how things go once Matt has tried these things and the blood work comes back. I read the article from Robert Kennedy, Jr. and I truly believe Matt was given vaccinations with mercury in them. It is just so sad. Thanks again, for everyone's helpful comments. I review this post everyday. It truly is one of the most helpful websites I have come across.

    Take Care.
    Kristi

     
    Old 06-25-2005, 05:43 PM   #10
    Lisa in Indiana
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    Re: NEW TO BOARD -Questions about DAN Dr, Vitamins, GFCF foods that kids like, lots more.

    Quote:
    Originally Posted by getsons4
    Hello

    Thank you to everyone for your advice and/or suggestions. Lisa - your post was of particular interest to me. I went to the 4Life website but I did not see the Transfer Factor for kids.....can you give me more information on how to acquire that. My DAN doctor did not mention that. Also, I had mentioned that I put Matt on the Almond milk, is the dairy free potato milk better tasting? I have not seen it. I went to a organic market called ROOTS when I was in Columbia, MD. I know that there is a Trader Joe's in Annapolis, MD and in Alexandria, VA. Could I get it there?

    Kristi
    Kristi,

    Ok...wanna be clear here, the milk is called DariFree, not dairy free. You may not be able to find it if you are looking the other way...KWIM?? LOL! It's made by Vance's. I order mine online directly from them. The thing I like about it is that it comes in a powder and you just add water. So, you can make as much or as little as you want....so less waste involved. I also have bought it at Jungle Jim's in Cinncinnati. I don't know if they have more than one, but they have HUGE variety of GFCF foods.

    Also, the Transfer Factor that we use is called Transfer Factor Chewables in Citrus Cream Flavor. We mash them up and mix with juice and give them with her liquid zinc each night before bedtime.

    Lisa

     
    Old 06-25-2005, 06:43 PM   #11
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    Re: NEW TO BOARD -Questions about DAN Dr, Vitamins, GFCF foods that kids like, lots more.

    Lisa - Is it necessary for me to go through my DAN doctor to order the vitamins/supplements that she recommends for Matt. Maybe a better question would be do you do through your doctor to order the supplements? My DAN doctor has there own pharmacy. They use places like Kirkman labs to order there supplies but I was just curious if it was safe for me to go online and order them myself based upon her recommendations and dosage instructions. Are some brands better than others? I don't really understand what the Transfer Factor is? It will cost me $90.00 just to call her and talk to her for a half hour so if you could help that would be great.

     
    Old 06-28-2005, 04:20 PM   #12
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    Re: NEW TO BOARD -Questions about DAN Dr, Vitamins, GFCF foods that kids like, lots more.

    Who is your DAN?
    You can order Colostrum for any reputable website ofr HF store. Transfer Factor is expensive- as so is Kirkmans. We have used Doctor's Trust for years, with excellent results

     
    Old 06-28-2005, 05:47 PM   #13
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    Re: NEW TO BOARD -Questions about DAN Dr, Vitamins, GFCF foods that kids like, lots more.

    Quote:
    Originally Posted by rids
    Who is your DAN?
    You can order Colostrum for any reputable website ofr HF store. Transfer Factor is expensive- as so is Kirkmans. We have used Doctor's Trust for years, with excellent results

    Our DAN is Dr. Pamela Compart in Columbia, MD. She is great and we are so glad that we found her. Thanks for the tip.

     
    Old 06-28-2005, 05:59 PM   #14
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    Re: NEW TO BOARD -Questions about DAN Dr, Vitamins, GFCF foods that kids like, lots more.

    I asked about your Dr., as ours is also female with a nutritional advisor in office- Dr. Mary Megson.
    Have a good evening!

     
    Old 06-30-2005, 01:22 PM   #15
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    Re: NEW TO BOARD -Questions about DAN Dr, Vitamins, GFCF foods that kids like, lots more.

    Quote:
    Originally Posted by rids
    I asked about your Dr., as ours is also female with a nutritional advisor in office- Dr. Mary Megson.
    Have a good evening!
    I heard of your doctor, she is out of Richmond, VA and very far away from us. If I remember correctly she has appeared before Congress and g ave testimony regarding the link between autism and vaccinations. Although I am happy with our DAN thus far I wish that Dr. Megson was closer to us. She would have been our first choice.

    Small world!

     
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