Autism
I’m new to this site but not new to autism. Our son was diagnosed 3years ago but we have suspected long before that. We are trying thegfcf diet and are having some great success with it. I beleive indoing what we can for our children. But when does it get to a pointwhen we are trying to make our children into something that they justaren’t. Some of these children aren’t going to be “normal” no matterwhat food you take away from them. When you get into this completelyare you ever satisfied with the results you can get or does it justlead on to something else? Sooner or later you are going to have toaccept the child you were blessed with and be grateful everyday thatyou have been chosen to care for such incredible being. I don’t want tooffend anyone or cause a huge stink, but these are my thoughts.
This post tagged as: children with autism, gfcf diet, autism
Santina Winkelbauer said,
Wrote on March 30, 2007 @ 8:53 pm
While it is true that some of the kids who are on this diet will still havemajor challenges after everything bio-medical that looks likely to help has beendone, for those who do respond to it, the improvements are very much worth it.Getting a child able to sleep through the night, have a formed (but not stuck)poop, tolerate environmental sounds better, not have repeated earaches, sinusinfections, or other similar issues, and I’m sure I’m only scratching thesurface of the effects many of us have seen with the diet are importantprecursors to whatever other therapy or activities the child may be engaged into help with their issues. A child who is repeatedly sick can’t be in school, socan’t benefit from regular or special educational services. A child who isunable to be toilet trained because of intestinal issues secondary tounrecognized (by the medical establishment) issues with gluten and/or casein maybe blocked from participating in things ranging from daycare (not necessarily legally, but still it happens), swimming lessons, club activitiesat church (”child must be __ years old and potty trained”), not to mention theinconvenience and, for those who are higher-functioning, embarrassment of nothaving achieved this milestone.
Each family will have to decide for themselves what bio-medical interventionsthat look like they may benefit their child they are willing and able to try,based on various factors in their lives, and in which order/how soon. Manypractitioners feel the GFCF diet, or at least having tried it faithfully for aset period and determined whether or not it helps the child, is the foundationfor other treatments, both as far as removing the major stressors (gluten andcasein) from a sensitive child’s system and also seeing just how dedicated theparents are to following up on other treatments. As you’ve seen since startingthe diet, it makes shopping and cooking somewhat more complex than before.However, if you’ve already seen improvement in your son (you say “greatsuccess”), you see that this is worth it, at least for you. What othertreatments you may decide to use once you are comfortable with the diet willdepend on what issues still remain and what in his history or other factors indicate certain things are likely to be helpful, whereas other things may lookeither unlikely to help or there may be other reasons you choose not to pursuethem, at least for the foreseeable future.
Bethanie Milin said,
Wrote on April 1, 2007 @ 11:55 am
I understand where you are coming from but want to take it from adifferent angle.
Are any of us ever satisfied with ourselves? Do we get to a pointwhere we say “I don’t need to learn anything more” or “I have it alltogether”? The fact is throughout our life we are growing, learningand maturing - even as adults. Disability or not, we all seek toimprove our lives and our quality of life. The question reallyshould be at what point should it be the parent that is pushing forfurther improvement vs. the child taking over and pursuingimprovement for him/herself. Trying to improve oneself or your childis not a sign of not accepting who they are but wanting them to reachtheir full potential. Autism is not who they are but a conditionthey were afflicted with just like cancer or diabetes. I can acceptwho I am as a person but still exercise or go on a diet when I amoverweight. To go on a diet is not rejecting who I am but seeking toimprove on who I am.
My autistic son was diagnosed 4 years ago. Many of his behaviorswere resolved with diet but he has a long way to go. He is non-verbal. Since I have been so focused on low-functioning autism, itwas not until earlier this year I have come to realize my oldest son(age 13) is aspergers. Knowing this has helped him separate himselffrom his difficulties (I do it because I have a disability, notbecause I am dumb) which has empowered him to overcome. It has alsoenabled my husband and I to understand him better and instead of usvs him, it is the three of us vs. aspergers. It has been a completeshift of thinking and my son has flourished because of it. Becauseof his age, he is the one seeking to improve himself. He ispinpointing his ASD related problems, asking me for advise and seeingif it works. He has asked me if he can start taking enzymes and whenhe can start chelation. He has much more confidence socially becauseof him being able to pinpoint what is wrong and how to correct it orat least hide it until he can perfect it.
Now I am dealing with a new revelation. As I watch my oldest son andrecognize some of the difficulties he has as being spectrum related,I am realizing I too have or had the same difficulties myself. Aftergrilling my mom with questions about my childhood, I believe I toofit on the spectrum. Now it seems like daily I am realizing thingsthat are related. One of my problems is that I am too touchsensitive. If someone were to step on my foot, they might as wellhave stabbed me with a knife it is so extremely painful. I am overlyticklish too which makes doctors visits very trying. Last Saturday Ihad a phase of being overly sensitive and realized I had not feltthat in a while. Knowing that I may be on the spectrum, I questionedwhat I ate. I had Kraft Mac & Cheese earlier that day which I hadnot had in a while. I suspect there is an ingredient that I amintolerant to and the reason why I have not felt this way recently isbecause of my attempts to eat better. I realize even as an adultkeeping my eyes open for clues can make my life easier. I am happywith who I am but know that I will never stop trying to improvemyself.
Wesley Marske said,
Wrote on April 3, 2007 @ 9:55 am
Hi, No offense taken. We are all just trying to help our kids because we dolove them and want them to have the best life possible.
Melisa Schumpert said,
Wrote on April 4, 2007 @ 5:18 pm
My son is an absolutely wonderful little boy, but before I addressedhis metal toxicity, systemic virus issues, nutritional deficienciesand toxicities, and other issues, noone would have ever known thatbecause he was “not there”. The pedneuro who dx him, told me to puthim in an institution right then [he was 3-1/2], enjoy my otherchildren, and get on with my life, because he would never improve atall [he was severely low functioning, classic Kanner’s autism, thinkRainman without the amazing memory]. Today he is biomedicallyrecovered, despite no doctors willing to help him.
I never tried to make him “something he is not”, just tried toeliminate all the things inside him that were not him.
Foods were the absolute LEAST of my son’s problems. He toleratednothing, but he had so many biomedical issues and problems going on,that I sure wish I had spent a lot less time and energy on food issuesin the beginning, and not waited so long to get on with the otherbiomedical interventions.
Well, I was not “satisfied” until I got my son’s body back to where itwas supposed to be. He is biomedically recovered, and every stepalong the way helped him with other issues, language, etc.
Not all kids are as severely messed up as my son tho.
I have accepted my son since the day I learned I was pregnant, evenwhen he had absolutely no language at all, did not recognize me as hismother, and all he did was line up objects all day and run his facedown the line. But I have never accepted the injury that was done tohim. I have worked every day to help my son recover from his injury. Isn’t that what most good parents do? Work their best each day toraise their child to reach his full potential?
They are good thoughts. Our kids are a blessing. Most parents hereaccept their children, just not their injuries. Some kids willstill have issues which are not entirely correctable, and thoseparents I am sure will still love their children and help them live totheir full potential.
But there is a difference between love and acceptance of the “child”,and acceptance of circumstances which have occurred. If a child hascancer, the parents work to eliminate it. If the cancer requires, forexample, removal of a leg, then the parents help the child live withonly one leg. Same with autism, parents work to help eliminate causesof symptoms, and even remove underlying causes. If there are issueswhich remain, then the parents help the child live with those issues,and learn ways to adapt, or overcome the issues. At least that is myopinion.
Of course there are other parents who learned that their child hadautism, and just gave up on him and no longer care about him, but Ihave never seen any of those parents post messages here or on othermessage boards. The parents here are those who are searching foranswers to help their kids. Not all of the answers chosen by parentsinvolve diets or even biomedical interventions at all, but parents whoare searching for answers to help their kids, are not parents who areunloving and uncaring. And it sounds like you are one who issearching for answers, and you love and accept your child also. Thisis a good thing.
Cleopatra Whittler said,
Wrote on April 5, 2007 @ 12:51 am
I have read your site and your posts and answer to my questions in regards to ayeast protocol during chelation. Before we started to chelate my son (only atsecond round- the journey has just begun) i mentioned to my DAN! doctor that iread that chelation- as well as B12 shots increase yeast and of course he saidit didn’t and if it did we’ll just put him on Diflucan. I’d like to stay awayfrom Diflucan or Nystatin- actually-most, if not all medicine, so i went out andgot the GSE drops.
Do i give him the GSE on the days off as well?
I started him with one drop (46 lbs) is that enuf?
Will OLE or no phenol interfere with GSE?
I also read about adding Milk Thistle and vitamin E while chelating is a goodidea, any reason why not to? Again, the DAN! doctor didn’t suggest this- i cameupon this searching and reading.
Melisa Schumpert said,
Wrote on April 5, 2007 @ 11:12 am
regards to a yeast protocol during chelation. Before we started tochelate my son (only at second round- the journey has just begun) imentioned to my DAN! doctor that i read that chelation- as well as B12shots increase yeast and of course he said it didn’t and if it didwe’ll just put him on Diflucan. I’d like to stay away from Diflucanor Nystatin- actually-most, if not all medicine, so i went out and gotthe GSE drops.
I gave it a little bit on the first “on” day, then full dose on thesecond and third [and any subsequent] days, and about half dose thefirst off day.
That is good to start. You can increase it as required.
No-Fenol helps it work better, by breaking down the yeast cell wall sothe GSE can get in there and kill the yeast. I give GSE with OLEbecause OLE causes viral “die off”, and viral “die off” causes yeast.
is a good idea, any reason why not to?
Milk thistle supports the liver, so it is good to give whilechelating. Vitamin E is an antioxidant, and giving antioxidants isgood to help clear the metals out of the blood once they are removedfrom the tissues.