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.