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SD's nutritionist

completely overwhelmed's picture

I need to vent about situation with SD’s nutritionist. I had been trying to get help from other moms of special needs kids to see what they actually deal with gluten free/dairy free diets with picky eaters and I felt like I was under attack as “the stepmom” who was clearly not doing everything possible and if I was a “real” mom I would be doing a million other things to help SD.

As a recap, SD is nearly 17. She lives with us full time. Her mom has gotten out of prison but hasn’t made any attempts to see her. SD has been diagnosed with a long list of conditions (anxiety, depression, Oppositional Defiant Disorder and Sensory Processing Disorder) which don’t really have any solutions. And she’s on medication, sees a therapist and psychiatrist and has had multiple hospitalization and nothing has improved. Starting back in 9th grade, she’s been on a downward spiral that started when she was expelled for refusing to do what teachers said and school has been one of the biggest challenges. She does have an IEP and is in a special ed program now with an almost full time aide but I feel like that's more eyes on what DH and I are doing and more people telling us what to do.

Besides all of the mental health issues, there’s a lot of other complaints that she uses at excuses constantly to explain why she can’t sit at her desk in school like everyone else – stomach pain, headaches, dizziness, lightheadedness, tired, and she has chronic hives. The hives issue has been go on for years and she's continued to have the hives in multiple hospitals and mental health facilities and different bedding, clothes and food have had no impact. She took part in study for a new drug to treat hives that worked for a while but that’s no longer effective.

All SD wants to do at school is lie down in the quiet area and sleep. That’s pretty much all she wants to do all the time. At the start of the last school year there was a  behavioral contract and meetings with a behavioral specialists with goals, rewards and plans and all of that was for nothing since immediately the excuses started about how bad SD felt and she just wanted to sleep all day at school.

DH works in the construction industry so he can’t just leave and take her to doctors appointments, so that all falls onto me and my mom who helps as much as she can. Earlier this year SD saw a gastroenterologist who did upper and lower GIs and didn’t find any problems causing her stomach aches. She’s been tested for allergies, gluten intolerance, lactose intolerance, etc and everything came back fairly normal. She has some normal mold allergies and other things like that but nothing that explains her digestive issues or hives.

Getting SD to eat anything healthy is next to impossible. Her mom feed her garbage processed foods so that’s what she wants to eat. Kids with sensory issues are notorious picky eaters and there’s entire categories of foods she refuses to even touch. The idea that kids will eat when they’re hungry enough doesn’t work. Last year when she was at therapeutic boarding school/residential program, she was sent to the emergency room because she had been refusing to eat for several days and also refusing to drink and there was nothing they could do to force her to eat.

She’s incredibly small (most people think she’s 11 or 12) so her cardiologist noticed she had been losing weight and suggested us taking her to a nutritionist or dietitian. This ended up getting a referral from our pediatrician to a nutritionist who specializes in special needs kids and works with a lot of kids with autism.

This is quite possibly the worse decision ever. The nutritionist mainly works with much younger kids. She recommended SD going gluten and dairy free. Apparently this is supposed to change everyone’s life (the nutritionist is a vegan and she claims her kids don’t like the taste of sugar or cookies). She also suggested that SD try a low histamine diet for the hives.

Remember -  the only reason SD was referred to the nutritionist is that SD is underweight and her pediatrician is concerned about her losing weight. SD doesn’t cook for herself and the nutritionist expected me to do everything – like the moms of 3 year old kids just diagnosed with autism.

There is no possible way I am going to give up gluten and dairy and hell will freeze over before my husband gives up gluten (he is lactose intolerant so he doesn't eat dairy already). So SD following the diet means I have to change what I cook for her. Separate meals have been standard since there’s only a limited number of things she will eat but it is a lot of processed foods mainly from Trader Joe’s (frozen mac & cheese, tomato soup, mashed potatoes, cereal) that don't require a lot of work. She refuses to eat most meat, so going vegetarian isn’t a problem. But getting her to eat meals which are primarily meat and vegetables is next to impossible.

The low histamine diet means there can’t be left-overs. Everything has to be freshly prepared. So there’s no possible way of making a big batch of something for SD and then freezing and reheating.

Every week I drug SD back to the nutritionist (she didn’t want to go but I at least got her in the car by telling her she could complain about the diet to the nutritionist), I got scolded about not convincing SD that the diet would help (honestly, I don’t know. I was willing to give it a shot but I don’t think this is going to work).  We haven't seen any change as a result of removing some gluten and dairy, but the nutritionist insists that even a trace of gluten or dairy could cause the diet to fail so we have to be even more vigilant to make sure there's no contamination or SD isn't sneaking food she shouldn't eat (this is utterly impossible).

But here’s the story I wanted to post (without all the lead-up I’m not sure it would make sense). Yesterday, SD and I had an appointment to meet the nutritionist at a grocery store.  The nutritionist was supposed to help SD understand healthy food choices and what food would make her feel better.  So SD walked around with the nutritionist in the produce section and all I could hear was SD saying “I don’t like that” and the nutritionist trying to tell her how great each of the veggies were and how to prepare them. The bakery is right behind the produce section and I could see SD was getting more and more frustrated but I didn’t intervene. I just stood back and SD started getting upset about something the nutritionist said about gluten free something or other. SD then had a total meltdown in the middle of area between the produce and bakery section. She was on the floor, screaming and crying for about 5 minutes. A 16 year old. Kids she went to school saw her and she didn't care. She continued to cry and carry on.

I know we need to find some other nutritionist or dietitian know but I’m dreading how bad things will be when SD goes back to school. She’s gotten worse about using “I don’t feel good” as an excuse for why she doesn’t need to do anything. The hives have gotten worse and people can actually see those. Her teachers can’t tell if she is or isn’t faking having a headache, stomach ache or being dizzy. But they can see she's covered in large patches of hives and sometimes her lips swell up.

Maybe gluten or dairy or histamines are the problem, but SD sees these diet changes as taking away all of her favorite foods as punishment. She doesn't like the gluten free substitutes. We tried a gluten free, low sugar cupcake at an expensive cupcake shop and it was inedible.  And there’s a lot of times SD is being excluded from eating treats. Last week I know my mom gave my daughter (SD’s half-sister) Oreos as a snack when she was babysitting and SD happened to come downstairs and my mom had to be bad guy telling her “no, you can’t have these.”  And of course, SD had a meltdown bad enough I had to leave work to help my mom deal with her.

The first day SD met the nutritionist SD told her that she thinks her dad and I want to make her life as miserable as possible.   Now we’re taking away her mac & cheese and trying to force her to eat salad while her sister gets foods she likes and we’re giving her proof. And I know she’s going to tell her teachers that we aren’t feeding her. She’s lost about 3 more pounds since seeing the nutritionist and it really doesn’t look like she’s getting much food at home. If I send her to school with a packed lunch she won't eat, I know her teacher will send a nasty email and SD will use "she's hungry" as a reason she can't sit at her desk. And if she gets lunch money, they there's no way she'll follow the diet and eat all the gluten, dairy and histamines she can at school. It's a no win situation but I feel like I have to try something otherwise it will look like DH and I aren't taking SD's health problems seriously.

 

Comments

beebeel's picture

If there are no solid medical reasons for this diet change, fire this stupid, super crunchy nutritionist and find another one. There is no way I would force huge diet changes on an ODD kid without MEDICAL evidence that it is necessary.

ETA: you can't change this kid's picky eating this late in the game. She is almost a year away from being an adult. I would let her eat whatever she can fix for herself. Stop cooking for her. She needs to learn these skills before she runs away and gets pregnant. 

Gimlet's picture

OP, I think it's great that you are trying to help, but honestly this sounds like it's bringing more stress to everyone's life than it's helping.  There are so many factors at play here, and this just doesn't seem worth it.  My YSS is an INCREDIBLY picky eater.  At this point, he gets a multi-vitamin every day, he drinks nutrition drinks, and the rest of the time he eats his toddler food. DH took him to a nutritionist who basically said calories trump the rest of it with kids like him.  Beebeel is right, your SD is not going to change now, or maybe even ever.  

I don't think this nutritionist is really grasping the bigger picture here.  

 

completely overwhelmed's picture

There are people online who say removing gluten and dairy from their diet helped stop headaches, dizziness, lightheaded, fatigue, brain fog, and hives. Doctors can’t explain why SD has these symptoms and there’s nothing  DH and I can put in her IEP about them. 

In 2 weeks there’s going to be an IEP meeting and none of the goals were met for last year. This year will be worse and her teachers are going to be asking DH and me and my mom (a former teacher who helps me picking up and dropping off SD) what are we doing about all of SDs issues she complains about constantly. This isn’t sometimes. It’s every day. And the hives are so much worse.

There’s no accommodations for any of these problems since she doesn’t have a diagnosis. All the tests say there’s nothing wrong and her psychiatrist thinks she just makes excuses and her teacher needs to make her sit at her desk. But SD whines and complains about how bad she feels interrupting everyone else.

The schools isn’t going to deal with another year of this.

fakemommy's picture

I'm sorry. I have no real advice, but I have had the same experience as your SD. I'm extremely picky to the point of having selective eating disorder. The idea of food in general gives me anxiety and the diet recommended for your SD would mean that I would basically never eat. I wonder if therapy of some sort would help more with the picky eating than a nutritionist. It may be worth asking. I would change or get rid of the nutritionist. If she's not understanding about the picky eating and is judgmental, she's only going to make the situation worse. I know when my eating habits are discussed at length, it makes me more apprehensive to try new foods. I reallly wonder if her stomach pains is really anxiety. 

Interestingly enough, I've also experience chronic hives. I had them for almost a year in my early 20s. I'm sure part of it was hormone related (and at 16, I would assume hives and headaches are hormone related). I went through all of the tests and medication (I'm sure you've tried zyrtec). And they were awful, they hurt, I couldn't sleep, I didn't want to do anything. I could never get comfortable. We never found the real cause, but it seemed to have been stress. I left a stressful job and took a trip to the beach, and the hives went away. 

So, no real advice, but just wanted you to know that none of this is you or necessarily her. Sorry you both are having to go through this struggle. 

keepitsimplestupid's picture

with Winterglow in that pre-mixed GF foods are disgusting.  When I switched my BS to a GFCS diet, I had to cook and taste everything I was making just to see if it was tasty/edible.  Much of it was gross.  It's a matter of trial and error.  I tried different brands and mixes in the hopes of finding tasty goods.  If your SD is opposed to say corn starch, you could try tapioca or potato starch as a substitute for instance.  Non-dairy milks aren't so bad, either.  I had my BS on almond milk and it cleared up his eczema within weeks.  A few years ago I finally found a GF cake mix that is out of this world (just made some this morning for his birthday), but it took a lot of trial and error to find a soft, non-spongy brand that tastes good.

I don't know how to get around the defiant attitude of a 16 year old, though.  That seems to be the biggest hurdle for you.  If she were more open to trying some things, it would definitely help.  Maybe you could try hiding the foods/ingredients in other foods that are safe and that she'll eat?

I wish you all the best.  Sounds like you're in quite a situation.

MoominMama's picture

Gluten free is for celiacs. There is no proof that it is helpful for any other conditions.

I think you are too involved and enmeshed in the drama of the SD and her problems. She obviously does not want to help herself and at 17 she should be. Sounds like a psychologist might be more appropriate but i guess she already has seen a slew of 'therapists' or counsellors. If she gets a lot of attention for all this then she is unlikely to help herself. 

Just dont buy the junk food she eats. 

 

MidwestMrs's picture

Does she have skin sensitivity that might cause the hives? Some fabrics and detergents make me breakout.

completely overwhelmed's picture

She’s been tested for allergies and nothing out of the ordinary. When the hives first started I switched to a chemical free detergent and it didn’t help. Then during multiple times she’s been hospitalized she’s still had the hives. She was taken off all medications and put introduced slowly to see if any of those were causing them. But nada.

She’s has hives so many different places with different bedding and different clothing. That doesn’t seem to be the cause.

she gets them in different places each day. Her allergist thought it was an autoimmune problem but there’s no real cure. She takes 4 Allegra plus a stomach acid medication and Benadryl at night. And she has big botched of hives. They were covering most of her thighs today.