Mother Knows Best

If you read my post entitled Beliefs, then you know that I think some of the best information about raising a special needs kid comes from parents who have been there before you. Today I wanted to open up my comments so everyone can share their experience on a particular topic.

I want to know everything you guys know about diets for special needs kids and/or food allergies.

Maybe it’s just me, but it seems to me that a very large percentage of special needs kids have food allergies/intolerances. I also feel that medical professionals are either quick to write off concerns or even scarier, quick to recommend a feeding tube/nissen combination surgery. I’m not saying that these are unnecessary surgeries, but personally I’d like to start with the least invasive option.

For us, sometime around six months, Charlie started to reflux terribly. Before that, it had been normal baby stuff and suddenly it got really bad. ABR helped, but it was still happening and–I’m going to get graphic here–when he did spit up, it looked like the milk had curdled in his stomach and it had a horrible sour smell to it. Then, one weekend, I had a conversation with my friend’s sister whose married to a doctor and has two typical children. It had taken them almost a year to diagnose her child’s food allergies–the doctors kept calling it reflux. After hearing that, I decided to just cut milk out of Charlie’s diet for a week. Presto! Reflux was gone. He still gets it from time to time when he’s feeling sick, but things are a LOT better.

I’ve also spoken with parents who’ve gotten seizure control with diet and many, many parents mention that their children behave better or have increased attention on certain food regimens.

So please, leave me a comment. Tell me about your child and their food. I’d love to here from special mommies who have kids on certain diets, but also from parents of typical kids who’ve had any notable food experiences. Feel free to write a ton and include links if you know of any. Let’s share all the information we’ve got and I plan to put up a link to this post so it can be a resource for others.

**Quick edit here: G-tubes are often the only solution for children who cannot consume enough calories. Charlie himself went home from the hospital on a g-tube and used it for a few months before being able to take food by mouth. It was a neccessity.***

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  1. Okay… I'm going to post a longer comment in the next few days. The next three are really, really busy. But I DO want to comment about O on the ketogenc diet (the last 14 months), O going off the keto diet (hopefully soon), my current exploration of diets, nutrition for healing/growing, potential food aallergies… I'd love to hear others' thoughts as well. Thanks for prompting this discussion, Katy!

  2. therextras says:

    It just so happened
    that we had some soy-based formula in the house the second night of our first's life, all of us crying because bf was not working. He hungrily took the formula. Each attempt to give him a milk-based formula he seemed to have stomach cramps. We called him lactose intolerant and kept his diet that way until he was a teen.

    Wholeheartedly agreeing with you that the source of reflux is not fully explored in every case. But physicians are not the only ones who want a fast fix to an issue. Some (few) parents will do anything but change their lifestyles – or will take recommendations for surgery without question.

    While you and I might not agree with those attitudes, I think it is important not to judge. I appoach each child with a g-tube with the opinion that their life has been saved by the surgery.

    Before tube surgeries became more common, well, I just won't describe the (many) skinny bodies of teens I met as a therapist.

    I'm not a nutritionist, but the extent of my recommendations on food are here:

    That is just one of a dozen posts I did on feeding and eating earlier this year. All the posts are linked in the middle column, in a box titled: Eating & Feeding. What else?


  3. luckeyfrog says:

    This isn't a special needs child, but I had a friend with fibromyalgia and it was suggested to her that she keep a running log of her diet. I believe the worksheets actually came from a company that then processed them, but in any case she tracked the food she ate- anything- for a few weeks and then any symptoms she had, and a computer would input all of the information and suggest what things she try cutting out. I think it was linked to a database that contained how long different foods would take to process, and one of my teachers had much better symptoms after changing her diet somewhat.

  4. Graham got the nissen/gtube when he was three months old. But his situation was extreme as his organs had been stretched and in the wrong places… also he had no suck/swallow reflexes, aspirated thin and thick liquids, refluxed what he did manage to swallow, and aspirated it.

    I dealt with every nasty side effect of a nissen, constant wretching was the worst, he'd wretch til he turned blue… a few times a day. As horrible as it was, I was an absolute necessity, and now after 6.5 years, he's finally eating and we're looking at losing the gtube in the spring.

  5. blogzilly says:

    I have zippo when it comes to experience with that topic, sorry.

    In other news…

    Just wanted to let you know that I forwarded The Lemonade Award to you in my blog today. It’s one of those ‘pay-it-forward’ type of things, pointing people in the direction of blogs I dig muchly.

  6. We had Nathan tested for all sorts of allergies when he was very little. I was breastfeeding but he had terrible "colic" along with projectile vomiting. I eliminated everything from my diet until I was going insane but there didn't seem to be a point as all allergy tests came back negative and he still was having problems. At about five months things settled down a bit and I continued to nurse. (The only alternative was Nutramagen which was about $30 a week.) The colic seemed to abate but he had the NASTIEST spitups. Curdled milk that absolutely reeked. At nine months Nathan cut breast feeding cold turkey, refused a bottle and didn't have the skills to take a cup. That was stressful. He seemed to sense the very real possibility of hospitalization and he finally took a bottle of reduced lactose formula. Spit up continued. At one year, I switched to whole milk and yuck, I get nauseated thinking about the upchucks. Currently we spend over $16 a week on Lactaid, which he takes pretty well. Reflux is rare now.

    I wouldn't give him so much but milk is such a big part of his calorie intake. Although Nate has high tone everywhere else, in his mouth area he has low tone but atypical low tone characteristics. He rarely brings objects to his mouth. Just about everything is spit out. It isn't necessarily a texture thing but more of a survival reflex not to choke. He doesn't eat fruits or veggies, but can get a little meat, bread and more than a few french fries down the hatch all right. I worry mostly about his vitamin, mineral and fiber intake. I make smoothies for him with lots of spinach, fruit and tofu. If it's in liquid form he does best.

    Still, I cook for four other people and smoothies aren't an option all of the time. It gets frustrating. We just started on Monday therapy for oral/feeding/speech. Hopefully I'll get some help.

    Obviously, I really don't have anything useful to add but I'm interested in what people will say about behavior. One of our therapist said that in her experience, at about 9-10 years old kids with right sided hemiplegia (what Nathan has) start to exhibit behavior problems. At that point they are sent for neuropsych evaluations to find out what is learned and what is organic. I've heard that dyes such as Red 6(?) can contribute to behavior issues. Nathan is a cute kid and I don't worry all that much but he does have some quirks that could just be personality or could be the result of CP but if the quirks develop more, might be something to address. Anyway, I'd be interested to know if anyone uses diet to help improve behavior, not just physical health.

  7. Heather–I have a friend who has noticed a definite correlation between her child's behavior and a dye known as Red 40, which is common in products for kids.

    Blogzilly–thanks so much!

    Creepy–ECMO did a number on Charlie's refluxes as well–the ventilator can really destroy a healthy gag reflex.

    Luckeyfrog–I find that data base information fascinating.

  8. Katy, I don't have any good imput but I do have a lot of experience with intolerance to foods and Faith. We spent yrs dealing with projectile vomitting and it got worse after her G tube, until she got put on Baclofen by her feeding specialist. Not for spasticity per se but it certainly helped curb the puking. She is currently on Resource Just for Kids 1.5 cal, it is not a milk based product and yet we have not seen any signifigant changes between milk or nonmilk products. I have always thought it to be a volume issue. If we break up her meals to 6 or 7 small meals she does a lot better, too. It seems to be a chronic condition for so many special needs children.

  9. Candace–I actually think that's some real valuable advice! Thanks so much.

  10. BusyLizzyMom says:

    My daughter had horrible reflux and over time we realized it was also food allergies/intolerances (egg,milk, tree nuts, strawberries,food colouring and high fat foods). We spent many nights picking out the curdles from her barfy laundry as it would just melt to the laundry, my dryer had an awful smell. Once we eliminated all the above foods her vomiting was minimal, we too were also told to go the fundo route.
    I just did a post about diet I found a new cook book and I love how I can hide veggies in foods and look after my daughters constipation.

  11. Gosh, where do I start… Sophie's dietary issues… when she was 4 weeks old (still before my due date) she had bloody diarrhea… all cultures/tests/etc. were negative for anything infectious. She continued to have blood in her stool off and on for another month. Long story short, her medical team eventually decided it was a cow's milk allergy or intolerance. Since I was mostly breastfeeding her, I had to cut all dairy (and milk as an ingredient in any foods) from my diet AND whatever formula we did give her had to be soy. Within about 2 weeks the blood disappeared from her stool.

    After 3 months we did a milk challenge using milk-based formula, under the supervision of her medical team. At this point she seemed to tolerate the milk-based formula well, so we started to incorporate some formula back into her diet, and I slowly reintroduced dairy into mine. I was still mostly breastfeeding her at this point, so she was getting a limited amount of formula. She would have isolated incidences where she would vomit, etc, but no more bloody stools at this point. I could never pinpoint anything specifically to the milk. She seemed fine. Very fussy though… and she has always spat up a lot, so I couldn’t really say if anything was different.

    Fast forward 3 months. Two weeks ago I stopped pumping and am still nursing a little, but as a result we started giving her much more formula (milk-based) than ever before, since I’m not pumping bottles of milk for her during the day anymore. She went from one bottle of formula a day to 3 or 4 bottles. At the same time that I stopped pumping, we started having more behavioral problems with her along with a LOT of spitting up and vomiting. Her spit-up also has the curdled milk look to it, I don’t know if this is something or not.

    Behaviorally, she was a mess- not a happy baby AT ALL. For 2 weeks, our nights were horrendous, she hardly slept at all… during the day it seemed like all she did was fuss, fuss, fuss. She has a high-pitched shriek that is like nails on a chalkboard. She wouldn't nap for 2 weeks straight. I took her to the clinic last week and the end result of that appointment was them telling me to put her back on soy formula and stop the milk-based formula.

    I was skeptical because the milk challenge had gone well back in June, and I felt like the milk issues were resolved a few months ago. .. but I tried their suggestion because I was desperate… Within a day or two she started sleeping through the night again, taking naps in her crib twice a day, spitting up MUCH less, and most importantly, she is HAPPY again after 3 months of basically being a pill most of the time.

    I don’t really have a point other than the biggest thing I noticed with or without milk/milk-based-formula was her behavioral change. I mean, she mostly had all the GI symptoms when she was a very little baby. Blood in stool, etc. When we did the milk challenge I think the behavioral symptoms kind of snuck back on us gradually, so I never put two-and-two together. Looking back now it is obvious. I had really come to accept the fact that my baby was just not a happy baby, I thought it was her personality or something. She has been so happy this week since we switched her formula (last week), it makes me sad to think that she went for months on a diet that made her feel bad. But at least she is happy now! We will put off giving her anything with milk (cheese, yogurt, etc) for a while.

  12. Great info, Paulette! I find your story very interesting and I'm sure other parents will as well.

  13. says:

    Katy, I tried posting a reply but it was too long for the comments section, so I posted it on my blog and thought I'd link to it from here, maybe you can cut it down to make it fit here?

  14. says:

    Holly also has some interesting stuff going on at Caleigh's blog:

  15. Chris's stomach does not empty properly. He had "issues" all his life. They didn't find out what was wrong until he was 23. He takes some kind of medicine for it, I think. Also, he only drinks Lactaid. It really helped him and Cheryl when they cut out regular milk. My last comment is NO RED 40! Abbie is living proof. She is miss toot woman when she has it. It is bizarre. We have another child at our school who is that way too. She was in trouble all the time at school and home until they cut out red 40. Now she is like a different child.

  16. In my house, MILK is a dirty word- cow's milk that is. Both of my kids were milk and soy protein allergic. The second kid way worse than the first. The first kid got Alimentum and the second ended up on Elecare. The oldest is now 5 and tolerates some milk products but for some reason ice cream makes her act crazy. It isn't the sugar- she gets plenty of that in other things too and it does not affect her. As for the little one, she has CP, reflux, and failure to thrive. She is now tolerating Soy Silk but it also has Isomil added for extra calories. The milk products cause physical symptoms but also she gets quite cranky- I think because it makes her feel crappy too. And about the dye- whatever dye is in motrin makes both of my kids nuts but when I discovered the dye free kind the problem stopped. I never wanted to be an avid ingredient reader but here I am…

  17. Elisabeth has really struggled with eating. She is mostly bottle fed. She has no idea how to chew and cannot tolerate any texture. She will even vomit applesauce. She is very good at eating vanilla yogurt though….and usually we can mix a little bit of a gerber stage 1 into it. But we have to be careful…..if the ratio of the food to the yogurt gets to high (like last night when we tried to sneak in too many peas) she will throw it up.

    We are taking her to a dietitian in Spokane soon to make sure that she is meeting all of her caloric needs.

  18. ok, i'm qa little on this but thought I would chime in. Little also has the curdled milk spit-up. sometimes it has a clear mucus mixed in it- gross- i know. I have found that lactose, some brands of apple juice & antibiotics will do a number on his tummy.
    we switched to lactose free milk & pear juice & things seem to be better. unfortunately, we can't always avoid antibiotics. we have a weight gain problem so he needs the milk calories
    & soy doesn't have enough. i add a tbsp. of olive oil to just about everything
    & i think that helps coat his tummy w/o blocking nutrients. i've looked into different diets, but in the end, its all expensive…

  19. Anonymous says:

    Oral eating is our only real 'win' in our life with CP. It's truly the one thing that I feel like we've had one of those magic solutions where things just turned around. And you're right – it was off the advice of other parents (mums really) and by ignoring the advice of specialists.

    We did 2 years on an NGT in definace of medical advice to do the g-tube/nissen. We took another 2.5 years to solve the vomits, but eventually learned that our son couldn't handle Pediasure.

    After begging dietians to help develop a diet, but being turned down (arghhh), out of desperation I gave myself a one week period to trial bottles of 1/2 rice milk and 1/2 regular strength Pediasure. We didn't have any body weight to lose so I couldn't risk too long a trial. Overnight the vomits stopped and the next day he was happy eating smooth purees again and within a month the texture sensitivity had reduced to allow lumpy purees and rice crackers. 6 months later, I can turn around in the car at a stop light and tuck a small piece of french fry into his mouth and he'll move it around and swallow it easily.

    Eating is now a fairly simple thing after so many years of letting it rule our lives.

    Go the mums!