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Old 02-10-2001, 03:14 AM   #1
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krisyd HB User
Question Treatment for Leaky-gut syndrome due to MMR vaccine

My almost 3 year old son will be tested in March for Autism. If anything his disorder is behavior related. He is high functioning but has some problems with appropriate social behavior. I am almost 100% positive that his behavior is related to the intestinal problem of leaky-gut syndrome. I have noticed that if he has a cold and spends most of that day not eating, his behavior is as close to normal as can be. He is on a strict diet that consists of no dyes or preservatives and no sugar. He has a high IgG allergy to many foods, including wheat, eggs, milk, soy, gluten, and many others. If he gets any of these foods, he becomes very difficult with biting, screaming, fear, and loss of eye contact. In general he is quite strong willed, but it seems as though he lacks common sense. He is smart and his language is doing great. However, he is so unpredictable, that it is even hard to try to potty train him. I was told that I should try to have a biopsy of his intestines done to find out if the MMR vaccine or flu vaccine he received, had caused a reaction in his intestines. I was also told that if that was the case they may be able to treat the intestinal lining so as to repair it with a type of antiinflammatory for the intestinal lining. I know this is the main problem, and his allergy is clearly an intolerance because he shows up negative for any allergy on the IgE, but positive on the IgG. We paid out of pocket to have tests done by a research lab. They say the IgG is what should be tested when there are behavioral reactions to foods, so we did. This a clear indicator for intestinal intolerances to foods. Please fill me in if you have any info Re: treatment for leaky gut syndrome. Currently my son is on Nystatin for Candida, Culturelle GG (Probiotic) for Clostridium Diff. He is doing 80% better than when this all began, 2 years ago. Thank you Krisyd

 
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Old 02-26-2001, 11:30 PM   #2
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really useful engine HB User
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also add folic acid and good quality pure cod-liver oil. Don't overdose on the CLO though.

 
Old 02-27-2001, 05:25 AM   #3
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Hi,
Thank you for your reply to my letter, and sorry it has taken a while to get back to you. I am sorry that you are having such problems, it is just as difficult to get appropriate input in the U.K. particularly when MMR damage is suspected.
My son, Oliver is also on a cf/gf diet. He had diarrhoea for almost a year before I managed to get him assessed by Dr Andrew Wakefield's team at the Royal Free Hospital in London. Our local medics refused to accept that he had problems. When eventually he had an x-ray of his abdomen, he was found to be clinically loaded. His rectum was stretched to 3x normal size and he had a faecal mass throughout his entire large intestine. The "diarrhoea" had been overflow. He began a laxative regime, and this is when we saw the most significant improvement in behaviour and his speech began to return. We then had to pay for an endoscopy and colonoscopy, because our health authority refused funding. Oliver was found to have oesophagitis, ileal-lymphoid nodular hyperplasia, colitis and proctitis. Paul Shattock from the Autism Research Unit in **********, tested his urine and found !opioid peptides, indicating a leaky bowel. Oliver now is still on laxatives to try and prevent the mass reforming. He takes ranitidine for his oesophagitis and reflux, and he takes salazopyrin for the inflammation throughout the rest of his intestine. Interestingly, if he inadvertently gets any gluten, he does not react at all, and I wonder if the drugs are maintaining a good enough gut permeability to prevent the peptides getting through.
Oliver's case is one of the 8 that have recently been put to the High court in London, as part of the litigation against MMR manufacturers. Because of this, his biopsy result was fast tracked, and he has measles virus in his bowel tissue.
At present, we have not tested for mercury.
I don't know if any of this is of help to you? We certainly found that introduction of laxatives seemed to be of most benefit, though the improvement did plateau out. At present, Oliver's speech is improving, but his general behaviour is worsening and he is becoming increasingly aggressive.
If you want any contact numbers for Andy Wakefield, Paul Shattock etc let me know.
Best wishes
from
Julie Loch

 
Old 02-27-2001, 05:29 AM   #4
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Hi,
Thank you for your reply to my letter, and sorry it has taken a while to get back to you. I am sorry that you are having such problems, it is just as difficult to get appropriate input in the U.K. particularly when MMR damage is suspected.
My son, Oliver is also on a cf/gf diet. He had diarrhoea for almost a year before I managed to get him assessed by Dr Andrew Wakefield's team at the Royal Free Hospital in London. Our local medics refused to accept that he had problems. When eventually he had an x-ray of his abdomen, he was found to be clinically loaded. His rectum was stretched to 3x normal size and he had a faecal mass throughout his entire large intestine. The "diarrhoea" had been overflow. He began a laxative regime, and this is when we saw the most significant improvement in behaviour and his speech began to return. We then had to pay for an endoscopy and colonoscopy, because our health authority refused funding. Oliver was found to have oesophagitis, ileal-lymphoid nodular hyperplasia, colitis and proctitis. Paul Shattock from the Autism Research Unit in **********, tested his urine and found !opioid peptides, indicating a leaky bowel. Oliver now is still on laxatives to try and prevent the mass reforming. He takes ranitidine for his oesophagitis and reflux, and he takes salazopyrin for the inflammation throughout the rest of his intestine. Interestingly, if he inadvertently gets any gluten, he does not react at all, and I wonder if the drugs are maintaining a good enough gut permeability to prevent the peptides getting through.
Oliver's case is one of the 8 that have recently been put to the High court in London, as part of the litigation against MMR manufacturers. Because of this, his biopsy result was fast tracked, and he has measles virus in his bowel tissue.
At present, we have not tested for mercury.
I don't know if any of this is of help to you? We certainly found that introduction of laxatives seemed to be of most benefit, though the improvement did plateau out. At present, Oliver's speech is improving, but his general behaviour is worsening and he is becoming increasingly aggressive.
If you want any contact numbers for Andy Wakefield, Paul Shattock etc let me know.
Best wishes
from
Julie Loch

 
Old 03-06-2001, 11:05 PM   #5
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krisyd HB User
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Hi Oliverthomas,
Sorry so late. I was wondering if your child was ever testd for mercury? My son had the hair analysis and it was said to be normal. I am excited about that but concerned because I know something is wrong with his intestines. I am apprehensive about the intestinal biopsy, but I realize that we need to know what is causing the major allergies and irregular stool patterns. Have you got any advice as to who to call and where to start. Thank you again

 
Old 03-31-2001, 01:56 PM   #6
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Hi. I am new to the healthboard room and I have read alot of your notes. It's great that you have read so much into the topic because I also have been trying find information on autism research. I really began to notice that my son Matthew had problems when he was 3. Before, my ex-husband kept assuring me that he was a late talker because his uncle did not speak until he was 4. At my son's 3rd birthday, I decided to find out what was wrong. Soon after, I found out he was Developmently delayed. When I found out, I tried to find information about this and hit a brick wall (1997) and the information I did find was very depressing and discouraging. I also found myself being alone because no one knew anything about it and other parents did not understand my son's "strange" behavior. I felt I was being criticized by others and that I was not parenting properly. Even after I met some others who had special needs children, I found that many of us were totally at a loss about what to do. Then when I read the article in Parent magazine about autism and finally felt like I had some hope. Not only did I find that my son fit the other children in the article, I found a way that I could help my son. Even after I had this encouraging news, I found that many physicians do not keep informed about these "treatments". I had a hard time trying to finding a physician who would actually listen about the connections with allergies & autism, even about secretin. First, I immediately removed milk from his diet which was hard because he drank it a lot. The very first day off of the milk he had to hold onto the walls to walk around. He was going through withdrawal. It was sad to see him like that but it was encouraging. Slowly, at preschool, his teachers noticed improvements in all areas. It was not until I moved last year that I found a wonderful physician that was open minded about various treatments and now my son has improved ever since. We had the Food Panel testing and he was found to allergic to wheat, milk, yeast, sesame, cranberry, and tomatoes. He has been off of milk products since May of 1999 and the rest since Oct 2000. It is amazing the number of products that contain wheat (toothpaste, etc.). Recently, he has been evaluated for a leaky gut and possible yeast infection. Matt has an elevated number of Klebsiella pneumoniae in the GI tract and his organic acids test came back with the presence of a number of organic acids produced by yeast. Instead of Nystanin, Matthew has begun taking Yeast Control, a product by Kirkman. It can be used in conjunction with Nystanin or as an alternative. The strain of Klebsiella that my son has is sensitive to the oregano found in the product. Matthew is also taking Pro-Bio Gold from Kirkman to replenish his intestinal flora. I have a question for you. Do you have any idea how long will it take for the complete elimination of the yeast or is it a life time worth of treatment? My son is also on Cod Liver Oil, urecholine and GABA. Thank you for letting me ramble on but I am so glad that I have found this healthboard because it can feel a little overwhelming with the diet and meds. Good luck to you and your research and I hope to chat with you soon.

 
Old 03-31-2001, 09:30 PM   #7
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WOW! I am totally amazed after reading all of your posts. First, it makes me very angry that you guys have such a hard time getting your doctors to help you, or at least do the testing/biopsies you want done in your search for finding answers to your children's problems. Secondly, I must say that since I have been reading the posts on this board I am beginning to have some 'light bulb moments' myself. My son is also autistic, but he has a primary diagnosis of Tuberous Sclerosis (tubers/tumors in his brain). I have thought all of his life that his problem was retardation due to the TS. It wasn't until a year ago (he's 8) that I discovered that Autism was present in almost 50% of kids with TS. I had always felt like he was autistic, but like you guys, his doctors just chalked it up as 'developmentally delayed'. The part that has my wheels spinning is...on Oct 7, 1992 my son had a MMR. I don't recall seeing any major change in him, but on Nov 23, 1992 he had his first seizure(due to what we later found out was the TS). He wasn't diagnosed with seizures until Dec 19. At the time he was admitted to the hospital for an EEG he was on an anti-biotic for URI, brochitis, and croup. He was put on Phenobarbitol and Dilantin at the age of 6 months. He was on it for a 1.5 years. He quit cooing, he quit sitting up, he quit rolling over, he quit making eye contact. He was very unhappy and whiney all the time. When he reached the age of two, he was taken off of the Phenobarb and put on Depakote. Within a month his physical delays were almost non-exsistant. He was walking, smiling, laughing. He will be 9 in June and has never developed speech. He displays all of the classic symptoms of Autism. I also read on here that research has shown that Phenobarb is the only anti-convulsant medication that has been proven to cause brain damage Getting to my point, how do you guys know that your kids have the food allergies and intestinal problems? If I knew how to tell, I would treat my son the same as you guys have treated your kids or are trying to get treatment for them. Keith appears to have no allergies or any type of intestinal problems. Do they manifest themselves in any way other than behavior? He is very healthy, rarely ever sick. He does get very angry and hard to control when he gets hungry sometimes. I don't know whether to believe that his MMR could have had something to do with it and his phenobarb just disguised it by doping him up, or did the phenobarb cause damage to his brain and rob him of his critcial years of development? I have felt the later all along, but now just don't know what to believe. Sorry to run on so long, I am just very curious and interested in learning more about what you guys are talking about. Good Luck to both of you in your quest for help for you precious ones. Take Care!!

 
Old 03-31-2001, 09:32 PM   #8
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One more thing I wanted to ask..how do you guys get your kids to take all of these medications? My son takes Tegretol to control his seizures and it is a constant battle to get him to take that, much less anything else. Just curious. Take Care!!

 
Old 03-31-2001, 10:51 PM   #9
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Hi Ro, and Eweejoe,
Ro asked about how long it takes to totally elliminate the yeast. Well I must first add that I am not an expert, YET! But I will share what I have researched and believe to be true for my sons situation. The yeast will never be totally elliminated, as it is a part of all olf our bodies. However, for those people who have a over growth for what ever reason, they need to be balanced. I read that there is an enzyme in our intestines that works tokeep the yeast and bacteria in check, in other words balanced. This enzyme may not be functioning properly in the intestine of children with the autistic spectrum disorders, due to the damage in the intestinal lining. So what I believe to be true is that if the intestine could be cured, which I know it can be, than these kids would not have all these problemsd with the toxins from yeast and bacteria overgrowth, as well as intolerances and allergies to foods. The allergy is really a true toxic effect because the high protein molecules which are undigested are slipping through the intestine and attaching to neurotransmitters causing all sorts of behavior and psych reactions. I hope that was of some help. I encourage you both to avoid any further vaccinations on you children, regardless of what you doctor says. If one child was sensitive, you are bound to have another sensitive child. My 8 month old developed asthma, no family history after his 2 month shots. He is also having the same bowel patterns as my 3 year old. So I would be cautious. As for Eweejoe, I would have to encourage you to continue to research and start by contacting Dr. Shaw at the Great Plains lab. Ask for a free consultation. Share with him about your child, and ask him what tests he suggests. I would guess he would suggest a Organic Acid and yeast test as well as the 90 food allergy panel. Once you have this performed you will have a better understanding of where you son stands. Children that don't speak can't tell you how they feel in so many words, they can only act out and for me I never could comfort my son when he did this but little did I know he was filled with toxins thatr were overwhelming his liver, and his nervous system. What testing did they do on your son to dx. him with the Ts? Did you go for a second opinion? I strongly suggest that, as well as removing all offending foods, milk, eggs ( all dairy), soy, casein, gluten, whey, preservatives, dyes, artificial colors and sweetners. Stevia is a natural sweetner that has no effect on your pancreas, and it doesn't cause the yeast reaction. Do expect the die off reaction, if he has yeast. I also suggest that you mention to his neurologist that you are going to attempt this since he has a seizure disorder. The yeast causes a die off toxin that effect the child in a way where they can get sluggish and wobbly on their feet for the first few days until the initial yeast die off, than from their it is just maintaining a balance for the yeast no to overgrow by using nystatin or a natural antifungal. Just be careful not to get an antifungal with sugar or die in it, it will defeat your purpose. Just for your info toxins can overload the nervous system and cause seizure activity. I don't suggest taking your son off his medicine, but I do suggest you telling your MD what your plan is. I don't know much about TS, but I know that in many cases seizures can be a symptom of a underlining problem that in some cases could be due to toxin overload. How were the tumors in his brain diagnosed? I really have a hard time with medical dx's being that I have been in this feild for 13 years and seen that docotrs are very human and inperfect. I suggest a second opinion with a doctor that works specifically with autistic kids, and completely see's the connection with vaccine injuries. I would probably, in your case Eweejoe, research and try to find out if your boy had a vaccine injury. If he began life normally, and than regressed that is a flag if you ask me. I wish you both the best. Please keep intouch. God Bless you both

 
Old 03-31-2001, 11:06 PM   #10
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Eweejoe, have you tried crushing up the tegretol and putting it in either apple sauce? I am sure you probably have. I usually give my son his culturelle capsule opened up and mixed into a tbsp of rice milk. I just pull the liquid up in a dropper and squirt it toward the inner cheek as this is easier to avoid the gag reflex. Also MMR is not the only vaccine that has caused injuries, DTP is another big one. The Pertussis in DPT had caused injury and some deaths. Do a search on vaccines and autism, and you will find a lot of info. Even Hep B has caused many problems. Bye for now. I hope that helped some.

 
Old 04-01-2001, 09:09 AM   #11
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As far as getting the medicines into Matthew, all his supplements go into his almond milk. All his medicines come in liquid form or in a hypoallergic capsule that can open. Matthew's Yeast Control is the one we have the most problem getting in him but what we do is place his meds into a lot of fruit juice or almond milk. I always offer him a reward for drinking every last drop. One tip always look to make sure there is no gluten and casein or other offensive things in the meds. I have read that term "natural favorings" can include milk & gluten. Isn't it just me or is it extremely frustrating that so many things contain wheat and casein? I wish they would state every single ingredient placed in a product as well and whether or not the product has been exposed to any of these (conveyor belts can be dusted with flour). Sometimes it feels like a losing battle. I was wondering has anyone found a good bread recipe that does not have yeast? My son has not had a sandwich in a long time and all the breads I have made can be used as bricks. Any suggestions would be great. Take care.

 
Old 04-01-2001, 10:10 AM   #12
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LOL! About the brick/bread comment..I do that and I use yeast As for Keith's dx, he has had CT scans and was originally diagnosed after a MRI. He has several small tumors in his brain(none in his heart, lungs, kidneys, liver, spleen, etc though, Thank God), his cheeks are covered with small angio-fibromas, his skin has the light colorless patches, his back also has the 'raised' patches of skin on them so I have no doubt that he has TS. Whether his TS 'caused' his autism, or it is just something that has occured concurrently with it, I do not know. His Tegretol are cherry flavored chewables. For the most part, he does fine taking them (he goes through spells) but anything else and you can FORGET it! I have always said I could put a drop of liquid medicine in a gallon of juice and Keith tastes it and won't drink it. He mostly drinks water. Occasionally milk. Other than that he doesn't like anything but soda pop and he doesn't get that very often at all. He has had all of his immunizations and my little girl is up to date until she starts school and she's 2 1/2 and is fine. No problems so far. To be honest with you, I am glad I never put this all together because I would hate to be faced with the decision of whether or not to get her immunizations. Which I do believe 100% that they are the cause for the problems the kids have. That must be a nightmare. I don't know whether it has anything to do with it, but my little boy is by my first husband and Kenzie is by my second. Maybe that made a difference. As for the applesauce idea, Keith will not eat ANYTHING even closely associated with a fruit. He will eat some veggies, but not many. His diet has gotten broader since he's started school, but he still won't eat fruits or vegetables. I will do some research on the diets you're talking about. I've already decided to try to cut out dairy products for him. I just need to educate myself, I guess. I just can't even imagine how I would ever get all of the anti-fungals and supplements in him daily. If I even try to get him to chew a tylenol when he's running a fever, he'll not only spit it out, but won't take his seizure meds right for a day or two. We have gone to Tylenol suppositories when he has a fever, otherwise we would be unable to treat him. Thanks for all of the advice and help. I appreciate any information you have to share with me. Take Care!

 
Old 04-16-2001, 11:11 PM   #13
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krisyd HB User
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Hi Eve,
I am sorry you had a bad day. Please! don't get discouraged. I have never read or seen the book titled "Special Diet For Special Kids", but I hear it is a great reference book. Even if you do what I did with Michael with all the diet and supplements, your son should be fine. If you choose to balance his balanced diet combined with the Super Nu Thera vitamins, DMG or TMG, Culturelle, MCT oil instead of Nystatin, he should be healthier than everyone else in your family. If your MD is giving you a hard time about a script for the nystatin, MCT oil works well for the yeast problem. As far as the MD's questions about yeast, not all these kids have yeast rashes. Mike only has them occasionally. When I went to the nutritionist, she looked at the lab results and Michaels body build and said he was doing great on the diet. Believe me if Danny gets hungry he will eat what you make available, after a little while. It took a little while for Michael to adjust but he eats his special foods all day. I would really avoid sugar though as well. I suggest that you call Dr. Shaw at Great Plains lab and discuss Danny's situation with either him or Pam. They would be able to refer you to a MD in your area who specializes with Autism, and possibly help you by answering any other questions you may have. I would also suggest calling Culturelle GG, they have an extensive list of doctors and they could find you a doctor in your area as well. I suggest that you find a support group near you and talk with other Moms who are going through this or who have gone through this. It is not an easy transition, but it all works out in the long run. I am here if you want to talk or if I can help you with anything. I just have to say to take one day at a time and don't let the rough days steel your joy. I usually look at the tremendous progress that Mike has made so far and I just Thank God, even in the middle of what seems like a storm, should Michael have a bad day. Don't let it stress you out, Danny will feel the stress and he'll probably react to it just like any other kid. When I'm stressed my kids make it worse by being out of control, so I know that feeling. Find recipes.. Lots! and start cooking until you can find a few things he likes than you can alternate. I will be thinking of you and I pray that God gives you a peace during this time of trials. First things first find a doctor who specializes, if you can. I'll talk to you soon

 
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