Poor, pitiful me syndrome with-public opinions

Hound dog

Nana's are Beautiful
I don't think he has Prader-Willi syndrome either. You can have limit control with something without it being a syndrome.

I think maybe I was thinking more of preservatives, sorry. My Mom struggled with an unknown food allergy for about 2 yrs. Turned it was a certain preservative. Now she just watches out for that and has been ok.

You're doing a great job. :smile:

Hugs
 

AllStressedOut

New Member
Marg, all of my difficult children are not biologically mine. They came with husband at ages 2, 5 and 6. I love them like they're mine, but unforunately I don't know much about their developmental stages etc. I do know that youngest difficult child has a huge gag reflex. Feed him some bland chicken and plain spinach and you find that out before the first bite touches his mouth. He throws up more than just about all the kids, I'd say maybe him and 10 yr old easy child are about equal. They both have extremely sensitive stomachs or it may be that they both pig out on things and sneak foods and make themselves sick. The difference is easy child isn't allergic to anything.

Daisy, how did your mom discover it was a preservative? Can they test for that in an allergy test?
 

trinityroyal

Well-Known Member
AllStressedOut,

I completely understand that you want to make a good impression with the new school. But, don't ever forget that you are the expert on your own kids, and you don't have to prove yourself to them. You are a good mom, as evidenced by your posts here.

With the school, sometimes they have to learn things from experience. With my difficult children school last year, I provided them with all the information about the techniques we use at home with difficult child, and then let them loose to learn how to adapt them to the school setting. I was adamant about food because, like your difficult child, mine has terrible reactions to foods. It's idiosyncratic...there's not one single substance that he reacts to, it's all over the map (lemons and cranberries, bad, broccoli and coffee, good) I keep a detailed spreadsheet of all the banned foods, and give it to the school, with updates whenever I discover something new.

The school cafeteria lady had a copy posted behind the counter, and would take things off difficult child's tray if they weren't allowed.

Go easy on yourself. They will make mistakes, but they'll also get to know you and your son, and come to understand what makes him tick. I know you want to fast-track the process, but a lot of people need to learn by their own experience.

The communication book, as described by Marguerite, worked very well for us too. We used something like that during the last couple of school years. Now the teachers have a much better understanding of us, and when difficult child tries to lie about something that happened in school, we have a document signed by his teachers to back us up in stating the clear facts.

Hang in there.
All the best,
Trinity
 

AllStressedOut

New Member
Thanks Trinity. This year is going to mean a bunch of learning curves for me and for the school. I'm so use to knowing the principal so well that I could just walk up, give her a hug and we'd discuss the most recent news regarding difficult children. I still talk to her, but she's out of the school system now. Last years principal was a total flake, never followed through on anything, no discipline, no safety and lied through her teeth to escape any discipline herself. So we transferred the kids to this new school. Now I'm flying blind with them all and it drives me nuts! I really just wish they knew me well. I've had so many bad experiences with the preschool youngest difficult child was in not knowing me well and with the CPS stuff that we think a parent may have called on, its all because these people didn't know our background. They didn't know me or husband and they just assumed we were awful people. So the unknown is so scary for me. When my old school found out we were transferring, more than one staff member said that the school was losing one of its best families. Leaving that is hard, but we just couldn't deal with the new principal again. Now I'm new again and no one knows me and its just really scary to think how they view us without knowing us. I've just had too many bad experiences with this.
 

TerryJ2

Well-Known Member
Ew, what a horrid experience and horrid prinicipal that was last yr! I'm so glad you changed schools. Good luck!
 

susiestar

Roll With It
All Stressed Out,

You need to get forms from your district nurse, usually in a separate office, a real RN, not just someone in the school to dispense medications, regarding his diet. Then the forms get signed by your doctor, you visit the nurse and a plan is made. The school has funds to educate the entire class and the teachers and cafeteria staff as to his nutritional needs. This is federal $$ from the lunch program.

My youngest, thank you, has food allergies. We have to make a plan every year for him. This is based on the doctor's orders. It would work the same for your son. If your school has any $$$ from the federal free lunch program (and virtually all schools do) then they have to have you fill out the forms. They can do an educational lesson with the class about your son's problems, if you want them to. They will give orders to the teacher about snacks, etc.... Violating this puts the funding for the free lunch program at stake, so many schools are very accomodating.

If your son had diabetes, or a heart condition that required him to have certain things you would insist on them with-o feeling guilty. Yeah, things would stink for the little guy, but RH is just as serious, so ditch the guilt and ask for the programs that are there to protect your kid.

I know how heart-stopping the entire DHS investigation is. We went through it when our difficult child abused our easy child. We needed help for her, and the doctor had to report it. It was ugly. But necessary. If you let the fear stop you from doing what you need to do, you are hurting your kids.

Sorry if I am too blunt. I fully expect you to take what helps you and ignore everything else I say!!!!

((((((((HUGS))))))))
Susie
 

AllStressedOut

New Member
No, Susie, you aren't too blunt. In fact "too blunt" normally isn't in my vocabulary. The only time I tend to be "fluffy" is when I'm dealing with new people. After volunteering as the PTA President for 2 years in my old school, I realized my straight forwardness came off bad in first impressions, so I tried to dial it down a bit. Now I use fluff when I first meet people out of habit.

The problem now is, I still deal with what I need to for my kids, but than afterwards I'm in panic mode over how it came across to everyone else. Then I explain myself in a novel or by over talking. I really need to just get over it.

difficult child did break out in hives today, as usual showing a reaction a day late. So I took a picture of him and I showed it to husband and my dad and they both saw the hives in the picture. So now I'm going to print it out and bring it to the 504 meeting next Thursday. It was a mild reaction this time, but it was still visible.

difficult child snuck a capri sun today and just can't seem to stay out of trouble. I'm starting to think the first psychiatrist isn't as crazy as I thought. I have added peanut butter sweatened with a small amount of molasses and more wheat into his diet in the last week and he has yet to behave for the day. We're now going to have to hold off on adding dairy back in because of his reaction to the foods hes snuck. I try to explain it to him and it just doesn't sink in.
 

Steely

Active Member
Why, what did the first psychiatrist say? What is youngest difficult children food allergy diagnosis so far? I assume he has had his insulin checked and all that jazz?
I will see what I can dig up and thus help if I can.......my family is like the the nutrition experts of the century lol.....both my mom, sis, and difficult child have a lot of food allergies.
 

AllStressedOut

New Member
The first psychiatrist put him on the diet for the reactive hypoglycemia as well as to help control the ADHD and ODD. Then this jerk psychiatrist that we saw twice said "reactive hypoglycemia" is a BS diagnosis. So we thought maybe we could get away with easing up on the diet, as long as we did a little at a time so we could figure out what caused the allergic reactions this summer. But his behavior has been so bad, I don't know if I should attribute it to the additions in his diet or the fact he isn't on any medications right now. We started adding wheat 2 weeks ago and added the peanut butter the week school started. But he's had peanuts all along, so the only addition really is the molasses in the PB. He hasn't had any allergic reactions to it, but both times he was allowed and snuck food at school, he had a mild allergic reaction. Not as severe as hives from head to toe or pumpkin head, but he was swollen and did have some hives on his face. So far, it seems he is allergic to food dye, but I'm at a loss in the chocolate chip cookie.

Here are the lists of foods he ate and what happened the next day:

Chicken strips
Fries
Mint Chocolate Chip Ice Cream
Pizza
(caused head to toe hives next morning)

chocolate cake with blue/red/yellow icing
neapolitan ice cream
(caused swollen face, slits for eyes next morning)

diet coke
pink lemonade
skittles
(caused swollen face, slits for eyes next morning)

chocolate cupcake, yellow icing
capri sun
(caused a small amount of swelling around eyes same day and next)

chocolate chip cookie
(caused a small amount of swelling around eyes as well as some hives on his face the next day)
 

tiredmommy

Well-Known Member
Wheat, dairy, red dye, chocolate and possibly soy are in most of those daily diets mentioned above. Here's what I want you to do: get a paper lunch bag & a notebook. Write every last crumb he eats all day. Save the ingredient lists in the bag. Most convenience foods have many ingredients you may not be aware of, such as soy as an emulsifier or rice & corn as fillers. Also list any physical or behavior symptoms. You need to know exactly what he consumes which day so you can effectively track it. Then, in about two weeks, looks for patterns. At that point you can begin to eliminate and challenge over weekly or biweekly cycles.
In addition, go to http://www.pollen.com and check the pollen counts for your zip code. My Duckie gets a lot worse behaviorally when the counts go up. We currently have high forecasts for grass, ragweed & chenopods in my area. She is highly reactive to grass and ragweed so her behavior has been horrible recently. :thumbsdown:
 

AllStressedOut

New Member
I like the idea of keeping a journal and labels.

What do I do about the food he sneaks? It seems its mostly things I didn't provide him that causes reactions. Even when he finds a way to sneak food at home, he isn't always forthcoming about what he truly ate.
 

tiredmommy

Well-Known Member
You have other kids, so this gets tricky. I have one so I was able to simply eliminate foods from the house that Duckie wouldn't be eating (except for Mom & Dad's secret stash... tee hee! :smile: ). Have you considered trying a whole foods diet? You make things from scratch. It's trying to adjust at first, but you generally end up saving time & money by doing better meal planning and making ahead or freezing leftovers. You may be able to appease the other kids by slipping them a few bucks to get chips & soda, etc, when they aren't around GFG7. Meaning at school, friends' houses, snacks for activities.
The thing is, it does tend to be healthier eating. There aren't the additives and added salt/fats/preservatives this way. We had to go this way when Duckie was on her strict rotation diet, but have maintained a good amount of doing this to date. I use my crock-pot a lot and bake a good deal. My family loves it. My husband loves the $$$ I save by making it from scratch and Duckie gets a kick out of telling her friends that her Mom made it from scratch.
 

Marguerite

Active Member
We've been there done that and it is so hard trying to analyse what could be an allergy trigger when there are so many variables.

We were given a recipe book which we used to duplicate a lot of favourite foods but without the colouring, preservatives or other problem triggers. For example, we no longer buy popcorn except in pure kernel form, to be popped in a hot air popper. We don't add the commercial popcorn salt because it is coloured, loaded with preservatives and artificial flavours. Instead, we add butter (plain butter, not the dairy whip kind, with loads of other stuff) and pure salt. It's a special treat to sit and eat freshly popped popcorn while we watch DVDs together.

We also found suppliers of 'home-made' type foods where there were no additives, just the raw ingredients (very few of them). Blocks of honeycomb, for example - nothing but sugar and bicarb soda. The allergy clinic also gave us a list of 'safe' brands to use. Even commercial lemonade was off the list, except for one generic brand.

We were told that difficult child 3 had to be stable on the diet for several weeks before we could try introducing 'challenge' foods. If difficult child 3 broke the diet or developed a reaction, we clock got re-set and we went back to start. He quickly learned that this unpleasant diet would end fastest if he cooperated. It wasn't fault-based - if he snuck food and reacted, the clock got re-set. If a food we carefully introduced produced a reaction, the clock got re-set. If we introduced a new food at the same time as he cheated on his diet, and he got a reaction - he was told that now we didn't know which food had caused the reaction and we would have to do it all again, we had now lost twice the lead-up time because we not only had to re-set, we had to re-test each suspect food individually.

Soon he was diligent about reading food labels.

This can be so tricky because often this isn't just a typical allergy, it's also a matter of levels. Example: difficult child 3 is allergic to the artificial colour brilliant Scarlet. If he takes medicine coloured with this, he gets a big allergy reaction, body and face covered with hives. If he eats ONE sweet coloured with this, he MAY get a milder reaction. If he eats another sweet coloured with this in the next week he will get a bigger reaction. If he's been 'clear' of this colouring for months and eats one small sweet, maybe no reaction. But that one sweet will have raised his levels and re-sensitised him, so even a tiny dose within a few days can be enough to trigger another reaction.

Or a different allergy could be more sensitive, because his immune system is already on alert.

Trying to sort this out is difficult enough, when you have a child who is cooperating. Accidents will still happen, he will forget, I will forget, someone else will forget. We also found that difficult child 3 was OK with nuts, in fact it was one of the few foods he could have. But he wasn't allowed to take ANY nut butters to school, so we really had difficulties finding food he could eat at school. No school lunches, it all had to come from home. We also had to choose foods which didn't need refrigeration - which almost begs for preservatives, or the kid goes hungry. When your child's lunchbox is sitting in his bag with an Aussie summer sun incubating it all morning, there's not much viable food can stand up to this. Forget the chicken sandwiches. It's no wonder Aussie kids are so loaded with preservatives that when we die, they don't bury us, they put us out for recycling.

Don't worry too much about what these people think - the more you communicate (effectively) the less you need to write a novel and the more they get to know you. Don't force it, just do what you have to do.

Setting up a meeting ASAP will also fast-track this process. And as I suggested before - the Book. It really does make life easier, for you AND the teachers. It gives you a much faster information turnaround time than emails. It also gives you ALL a chance to read back through the book and sometimes see a pattern that emails don't always show, because with emails you don't usually see them all side by side.

It's early days. They already know you have genuine concerns - you're not imagining any of this. They also already know that you are on to this, you are not fooled by your kid.

Marg
 

AllStressedOut

New Member
When he started this diet, all foods we ate as a family were from scratch. If we wanted to add something like mac n cheese to the meal, we just made sure there was always another side like a veggie. He would eat leftovers the next day for lunch, even at school. When school started this year, we still provide his lunch, but we were allowing him to have a PB sandwich, which isn't on the doctor ordered diet.

All of the food in our house that isn't in a can or isn't something he'd want to pop in his mouth, is locked in the cabinet. Today though, our daughter left a half drank capri sun at the table and difficult child got ahold of it.

As a family, we eat dinner together every night. I cook or husband cooks every night except Friday. We eat pizza on Fridays. On Fridays difficult child would eat leftovers from a previous day or we'd make him some chicken with veggies. We were really hoping to ease up on his diet, because it stinks and because he is so small. He and my 3 year old are darn near the same size. This is mostly due to the medications he was on, but the diet didn't help.

So now I'm thinking I can't even ease up on his diet. Or maybe what I should do is keep him on plain foods until he is on medications. Then I'll know for sure if its the food or the lack of medications. One thing that stinks is, if it were still summer, he'd be behaving better. School just does this to him. He just doesn't do well in a classroom setting. He does so much better on a very structured schedule at home that doesn't involve interaction with anyone unless I'm around to supervise.'

I've thought about shadowing him at school for a few days once our daughter goes back to preschool. I thought it may help the teacher see the difference in his behavior when with me and with her. But then I think that would just make things worse. As his old preschool said, I run things like a nazi, so this is why my kids behave. Thats the last thing I need the new school thinking.
 

tiredmommy

Well-Known Member
I prefer to think of myself as providing a firm & rigid framework in which my child is learning & growing rather than a nazi. :wink: While most of her friends have been passing out in front of the tv at 11pm each night this summer, Duckie has generally had a firm bedtime of 8pm. Healthy foods, limited junk. Lots of exercise and outside play. Chores and responsibilities.
Most of our kids need us to cater to what they need. Some difficult children needs some leeway or leniency, while some (mine) need a rigid routine or they fall apart. Anyone that calls you a nazi for running a tight ship may be feeling guilty about their ship being a bit lax. :devil:
 

Steely

Active Member
Have you taken him to an allergist so they can test what foods are trigger? If so, what foods show up?
 

lizzie09

lizzie
Hello Allstressed out


I dont know if you are still on the board but I have joined in recent months and have son with Prader willi syndrome
 
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