Choosing not to change the diet | Autism PDD
I am so conflicted about this. Some parents see improvements but who is to say that it was the diet (although some see negative changes after a slip up). If you had started the diet a few months ago, you would have thought all these improvements were due to the diet.
I see parents becoming so consumed with the diet that they have no energy/time for anything else. I see kids not eating well because of the diet.
Does you son have gut issues? Does he crave milk/wheat? If so, you may want to put it on your list of "to do" issues.
We tried the diet. It was really hard (and we already have a limited diet, keeping kosher in PHoenix, AZ -- so we are used to difficult diet restrictions). We didn't see any improvements.
I guess I am saying that you are not a bad parent. You should only do it if it seems right for you and your kid and you feel like you can take it on.
Raquel
Hi Tkny..
Wow. Your posts and others really hit me.
You see, I put my son on the diet due to GI issues. He was a classic candidate for it. He had an extended stomach, loose runny stools and other allergy like presentations. He appeared to have stomach pain almost daily. However, he craved crackers and bread and these two things on some days were his ONLY source of nutrition. Implementaiton of the diet improved his nutritional intake. It made his GI issues practically disappear. We got additional eye contact and awareness as an added bonus. One could argue that this came from being painfree and allergy symptom free. I am unsure.
The implementation was easy for me. We have a local healthfood store that carries a vast array of these products. This store also sells fish oils, omega supps for children, etc. It is a spectrum shopper's delight. I spend about 20 miunutes per week shopping. It is probably less time than it take most folks to put on a face of make-up or in Fred's case to shave and splash on some aftershave.
However....you are already on a great path via ABA, speech and OT. We won't be starting that until the fall. You are getting the scientifically backed therapies that have proof they work. I implemented a stupid diet. I feel terribly guilty about waiting as long as I did. And often times, feel like I am a bad mother.
This autsim thing is funny....it makes you second guess yourself. It makes you unconfident in your parenting abilities. And it keeps you awake at night. Other spectrum parents can make me feel guilty with one small remark.
No Tkny...you sound like a wonderful mother. Peace.
Hi my son is 3 1/2. He gets minimal therapy right now. He too, is a very picky eater. Only 5 or 6 things. He has pretty severe language delays and most other "typical" issues as well as some more severe physical issues. He is progressing. Learning words, learning to communicate with me. Engaging others. It's been something new almost every day for the past few months. If he had been on a special diet or taken lots of supplements or had tons of therapy, I would have to guess what to attribute the progress to. He might be progressing quicker with more, but he is happy, I am happy. I don't feel the need to add in tons of other things in our life right now. It is such a personal decision as there is no "sure thing". All kids will react different to different interventions. If your Dr. thinks he has food allergy problems, that is a whole different ball game, in my opinion, and has to be treated as any medical condition. Anyway, do what you think is best for your child. As far as I know there is no magic out there. No, you are not a bad mother. You are, as we all are, learning, asking questions, seeking out new things to help our kids. I hope my answer does not upset anyone else. It is just my opinion.If you're a bad mom then I'm right there with you!!!
My kids are decent eaters and like a wide variety of foods. They also want to eat whatever we're eating so having one set of food for them and one for me and another for dh is daunting (dh and I can't eat same food because I'm on the perpetual diet and he has metabolism of a 16 year old). My dh and I both work full time, my nanny is an awful cook, we eat take out at least twice per week, lean cuisines are a staple for me. The logistics behind trying this were so daunting I filed it in the absolute last resort if nothing else works category! I still toy with the idea of taking out dairy milk and replacing with soy or something else, but the thought of pulling off GFCF makes me just cringe....
So far the other things we've done have worked well and C has made great progress so I'm not feeling as guilty any more for not trying it.
Hi everyone,
My son Ryan has started therapy (ABA/Speech/OT) only 4 months ago and already we are seeing fantasic results. He still has a LONG way to go but I am very optimistic about the progress hes making so far.
The only other change that we have made is that we give him fish oils every day. We have not changed his diet at all, and its a pretty poor one. Lots of carbs, fruit and dairy and thats about it. Hes growing and gaining weight consistently so I havent been overly concerned.
I havent been able to bring myself to try the GFCF diet- it would just be such a huge overhaul for him and with all of the intensive therapy hes getting (which makes it such a long day for him) the thought of taking away all of his favorite foods just breaks my heart. However, there is a piece of me that feels tremendous guilt for not at least trying the GFCF diet. Ryan's PDD is on the mild side, most of his issues are communication and social and hes very delayed in both of those areas but there are very few behavioral issues other than joint attention. Am I a bad mother for not at least trying something that has the potential to really help him even more than I already am?
Well, if you're a bad mother, so is my daughter's mother, because she won't try it either! It would be very easy to implement in our case, too, as the girls eat a wide variety of foods, but it's not something their mom is willing to try.
Just keep in mind, the diet only has a reported effect on some kids, and there's no real good studies are trials documenting it's actual effectiveness, so it's not the same as, like, witholding insulin from a diabetic child.
It's something I, personally, woudl like to try, but I don't think it's a sign of any sort of character flaw that you (or my girl's mother) is unwilling to try it, especially if there are not GI issues and behaviors that lead you to believe that there are food sensitivites going on.
Our developmental pediatrician thinks that the diet helps a small number of kids who have food sensitivities or very poor diets (where going GFCF actually improves their nutrition), but she does not think it helps the majority of kiddos, and didn't encourage us down that road. A good diet will improve anyone, especially if the dietery changes means getting away from something that they were particularly sensitive to. She said that most of her patients who try the diet go off of it after a while, and she, personally, hasn't seen anything like a recover from the GFCF diet.
On the contrary, I've hired two tutors who work at a local autism school, and they say that there EVERYONE is on the diet. They say that they notice some subtle behavioral changes in some of the kids, but have only ever seen one very dramatic improvement due to diet, but again, this kid has lots of GI problems and was very irratable and hyper - doesn't sound like your kids or mine. They say, for the majority of cases, the parents are working very hard for what appears to them to be mostly placebo effect.
I wouldn't feel too guilty about not trying the diet, is what I'm trying to say. It's not proven to be effective, although some do claim miraculous turn arounds with dietery interventions.
CF GF diets work for some people and dont for some others
I think its very smart to focus your energies on one thing at a time -
You are being a a sensible mom
I know I spend a lot of energy on CFGF -planning it out, shopping for it etc etc and R was fine even after I quit it
In some ways I am glad I atleast tried it and strictly for 3 months, in some other ways I wish I had spend all that energy on playing with R or seeking out other interventions
We did the diet for 7 months and then went off of it. It didn't really help our son. I am glad that we tried it and it's not really that hard. I think you should try anything that will potentially help your child. I have heard people say it is not nutritious but you can eat meat, veg, fruit and rice potato and corn. I'm not sure what is "not nutritious" about that diet. It's somewhat hard to implement but not impossible. It's not the hardest thing to try and it may help, I think giving it a try is worth it. That's just my opinion and I would never tell a hard working mother that she is a bad mother, it is a difficult decision to make and a huge commitment. I do personally know one child who the diet worked wonders for and he is no longer on it, he did have gi issues from birth. No one including his teachers know he was considered autistic ever, he is in reg. school and has no issues. Even if you replace dairy with rice (not soy) it isn't that hard and you've done a good portion of the battle. That website tacanow.com has a lot of good info including step by step how to implement.
We do not do the diet, but I double checked with our doc to make sure.
Look, you can go to your pediatrician and tell him/her what you are thinking about. Offer to pay for the bloodwork out of pocket so they don't squirm about passing it through insurance, but here's what you can do.
A child's immune system can be tested to see if there are indeed allergies or sensitivities to anything (including milk or wheat). The immuno or gammaglobulin tests ( I think there are maybe 7 they run?) are done with a single vial of blood...when peope have that horrible wheat alltergy (seliacs?), this is how it can be pinned down initially. You see if the kid is allergic to something - if yes, pursue it further. Cole's cool.
For the doc, I made a giant laundry list of stuff I wanted her to run, and printed out a few pages of supporting documents. Then set up a phone appointment saying - "hey - we are high mainenance as all get out, and if you are too swamped to deal with this complicated case, no hard feelings. Do you have someone else you might recommend? You are SOOO awesome, but we are going to need somebody's serious time. What do you think?" This was a compliment and indirect threat to leave her practice if she didn't pony up!
Now, I am not a believer - no offense to others - in the thimerisol effect, so there was not DAN type testing. Just straight up medical tests, although some were slightly off the wall.
We do not do the diet, but Cole absolutely hates milk, so aside from cheese and yogurt, it'd be a snap to eliminate it. For kicks, we took away pizza, etc for a month, and saw no difference. He is also a former micro-preemie, and as with most of them, he's not a great eater. So if a slab of pizza makes him happy, then we are all for it.
Regardless of whether you do or do not do the diet, the fact that you're online trying to learn as much as you can means that overall, you are a GOOD parent. Don't sweat it!
The diet is a huge pain in the butt. We are doing it for 3 to 6 months because it is something I can do myself in the face of not being able to get enough professional intervention for my child. It only helps a portion (definitely less than half) of kids. H has no indication that he needs it-I am just desperate TO DO something. The only (small) change I notice is that H is no longer waking and tossing and turning and moaning from 2am-4am and I think that is dairy- someone suggested yeast---but he was DAN! tested and nothing indicates an issue.
All that to say-if your child is progressing - keep pursuing what is helping him to progress and dont beat yourself up for the "other" stuff you may not have the time for. If you are curious and have the time I would just try taking out dairy (only takes a few weeks to pull that out and see if there is improvement- with no huge expense or involvement besides avoiding those foods) PS- and supplementing with calcium.
There really are so many things that are GFCF.
Your not a bad mom by any means! Remember the GFCF diets don't work with every kid. If your child has alot of stomach, gas/bloating, and bathroom issues, then the diet might be needed. But if your child is like mine, a kid with no health issues, then the diet might not be worth it.
We tried to the GFCF diet in early 2005 and my DD basically stopped eating anything that wasn't fruit or veggies. She hated the food items and mixes we tried and cried her eyes out for nearly a month. I just couldn't go on, it wasn't for us. We did fish oil for about 1 1/2 years and it worked well. We stopped when it was making her a little ill, gas and what not.
My advice is do what you feel comfortable with.
If you're a bad mom than I'm right there with you....I tried it with Quinn when he was 6yrs old but we didn't follow it strictly enough.....it was very hard for us.when we were trying it out ...I used to buy a GFCF brownie mix that was delicious...I forgetthe name of it and it was expensive but...It was soo good
...when I would bring these brownies to my parent's summer place.....my mom used to like to offer them to others to see if they would notice that there was something different about them......lolstomach problems. Okay, so he's a little gassy....but "regular", not
bloated. I guess it would be to hard for a disorganized person like me to
add the diet to my already maxed out days.
I will probably experiment a little, like taking away dairy to see if there are
any differences, or switching to gluten free products for a bit. But unless
I found drastic results in my child, I would probably just stick to limiting
their quantities
You are certainly not a bad mom. You do what's right for your family,
and listen to your gut. I think it's very common for parents of ASD kids to
feel guilty "for not doing enough" It's how we beat ourselves up. Be kind
to yourself
[QUOTE=momof1]If you're a bad mom than I'm right there with you....I tried it with Quinn when he was 6yrs old but we didn't follow it strictly enough.....it was very hard for us.
when we were trying it out ...I used to buy a brownie mix that was delicious...I forgetthe name of it and it was expensive but...It was soo good
There are some really yummy GFCF treats that we still get. We buy soy nuts, the kids LOVE them! We also get soy bean ranch flavored tortilla chips, they are VERY yummy.
I too was suffering mom-guilt over not doing the diet. My son only eats literally 9 things and none of them are on the diet.
Our developmental pediatrician said this to me and it made me feel better. So I will repeat it to you. "Diets work for some, not for others. In your case, let's keep the diet in your back pocket as a last resort if nothing else is working. In the meantime, remember that your son is going to spend his whole life trying to "fit in" with all the other kids, trying to be social when it doesn't come naturally.... eating is very social. If he can eat like & with all the other kids, so much the better. He is going to feel different in lots of ways, this is one way he can feel the same. It always makes me heavy when I see a child trying so hard to fit in and he is the one guy at the party that can't have any cake".
You have to do what you have to do to get through each day. No one will ever judge you harder than you will judge yourself. Best of luck.
At least you know it's always an option. I heard about the GFCF diet over a year ago, but have just now been READY to tackle it. It does require a cabinet overhaul and was pretty difficult at first. It does get easier, but I took my time just researching the diets (Feingold, Low Oxalate, etc) until I felt confident enough to begin. The labwork helped confirm what direction I needed to go in. I say try it when you're ready or else it will become a chore. I actually enjoy looking for new foods now, but I was definitely overwhelmed at the thought of trying a diet amongst everything else at one point.Sharlet may well be a candidate (still waiting for GI appointment)
But we don't do diets either, life is stressful and time consuming enough
and Sharlet is so fussy we are happy if she eats anything.
You are not a bad mother for not doing diets.There are going to be lots of therapies and interventions out there for autism. You cant feel guilty about all of the ones you dont try for your child or you will go crazy. The gf/cf diet is not a cure for autism. It works for those children who have an intolerance to these foods. I originally went dairy free with my kids as I noticed how severely hyperactive my son became when he ate foods high in milk. Literally running around the house, unable to keep still even bouncing off the walls. His little sister who when she went from breast milk to cows milk developed diarrhoeo and what seemed like gastro. So I took both of dairy. The extreme hyperactivity returns when they eat mil products. Eventually I had to remove gluten as well so as to relieve gastro issues. Now they finally do normal poos. It doesn't sound like you have any reason to place your son on a gf/cf diet. I attended a lecture by Donna Williams, an adult with autism, who says she also is on a low salicylate diet. Every child is different and has different issues. Liz
As a parent, you just have to do what you feel is right. Both of my kids are on the gfcf diet. Now I knew they had gastrointestinal issues, such as loose stools, bloating, etc. So we had a good indicator that we at least needed to try it. Of course, at the time I thought their stools were fine because that was"normal" to me since I had been wiping the same poos since they were babies. The diet is now an intregal part of our daily life because it has been beneficial to my husband for his rheumatoid arthritis to be eating gfcf most of the time. We have just been doing it for so long.
If you decide to try it, just do it gradually. What I did was eliminate products that contained casien (dairy) because that was easy to fine replacements. I saw a significant improvement in their language, behavior and bowel movements. Because of that, I took the next step to eliminate the wheat. So maybe that might be something for you to try if you really want to at least see.
If you are looking to try something, reasearch digestive enzymes...specifically the one that breaks down wheat and dairy protien (such as the one made by Houstone Nutraceuticals for they are chewables or Kirlkmans Labs) and even the ones that break down Carbs. You can also do some research about yeast overgrowth and autism. Yeast overgrowth contributes to many health issues outside of autism and can affect over all health, as well as behavior.
But, no matter what you decide, never ever feel it was the wrong decision. Your child is happy and is progressing...and ultimately, that is what matters.
I haven't had a chance to CUOP but the vast majority of parents of kids on the spectrum I know have never tried any of the alternative therapies, including diets. The few I personally know who have, only one has stuck with it. One other stuck with it for 2 years and saw no changes and eventually dropped it. If your child has gut problems, take him to a doctor. Othewise, the ABA he is getting is the prime research-based intervention, so that is the most important.Don't feel bad. It sounds like you are concentrating on what is right for your child. We never tried it either. My son has no GI or gut issues. He is a picky eater and we just didn't have the heart to take away what he likes to eat. Also, with 2 kids we figured it would be hard to have one on the GFCF diet and the other not on it. (Drew would just take food from Nick)
Laurie
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