As I have talked about, my dd Sage (age 7) has a form of Sensory Integration Disorder. She is a very intelligent child, who is oversenitive to food textures, tastes, smells, loud noises, bright lights, changing activities, other people's mood changes ect. We have been waiting months for an OT therapy to open in the time we can make it. (She goes to school so cannot have therapy during the school day.) Easter Seals had "lost" every person who originally did her evaluation, and we have been wating months for therapy. Due to her limited diet, she has chronic constipation, and was diagnosed with Mega Colon (a really really big colon, usually caused by holding stool) and the possiblity of the nerves in her lower colon and rectum not sending signals properly. Two weeks ago we had a horrible bout with constipation, the child actually became jaundiced and it scared me to death, nearly. The doctor prescribed a medicine which simply holds more fluid in the stool (as stilumlant laxatives are addictive and can cause more problems than they solve) before the medicine had time to work we had an other bout. This time (last Wed) we had to bring her to the Emergency Room. She was screaming in pain, was holding the stool in, as it hurt so much to try to release (it is as big around as her arm when it finally comes out) and I was afraid she would become jaundiced again. They gave her a "soap sud" enema, and she, happily, went and went. I felt SO bad, the child was in pain, scared, and just couldn't go. Regular suggestions for producing a stool, like "more fiber" won't work, as the SND causes her to limit her diet. We know we have to really cut down on her dairy consumption (I personally am allergic to dairy, and find dairy products disgusting, but cheese is one of the only semi-nutritious foods she will eat.) I am a "seasoned" parent (been a mother for almost 21 years) and have never had to deal with anything like this before. We've had her grow her own food, prepare her own food, serve it ect, still she can't (NOT won't) consume it. Anyway, it was so traumatic for all of us. She pooped today, all on her own, a nice soft stool, with no pushiing, no crying, no waiting and happy people all around. What a thing to celebrate: being able to poop. Not something I ever thought I would have to do. Poor baby. I have looked around to see if anyone else can do the therapy for her (she needs a pediatric Occupational Therapist who deals with children with normal or above normal intelligence, who specializes in food texture problems. And there is NO ONE but Easter Seals (whose waiting list we are on) and one other place who doesn't take our insurance, and has given waiting list of 6 or longer months. (Two kids in college, we can't do this without insurance.) She will eat real fruit leathers, and she ate an Organic Whole Wheat Apple bar today. At least it's some fiber. Giving her lunch, or even dinner, especially to bring to school is nearly impossible. All she wants it macaroni and cheese, and we have to help her understand that this is a "occasional food" but I, for the life of me, can't think of anything else to give her for lunch. I've never had this problem with ANY of my other kids, and always had good, colorful food on their plates. The ER was kind, her nurse was WONDERFUL, sweet, had more patience with children than even I have, and did the enema with as little trauma as possible. But, I do NOT want to repeat the experience. Just filling everybody in, on why I haven't been around much. If anyone wants to give Sage healing thougts and "try new foods" thoughts or prayers or vibrations, I would appreciate it. Thank you all for listening.
Just a thought....why not try to sneak some of that benefiber stuff into her food. It's supposedly tasteless, textureless, etc. I mean, as much as I'll be hoping she starts eating more fibrous foods, in the mean time, a little bit of conventional processed stuff couldn't hurt, right? *eating vibes for Sage, stress-free vibes for Maggie*
yea I was thinking that too... have u ever researched that "benefiber" stuff? Not sure whats in it or what its about but it can be mixed in a glass of water and is supposibly tasteless. And the mac and cheese thing... is she particular about the cheese? Maybe you can make a bunch of different versions (with different cheeses) and then try to branch it to using the same noodles and a similarly textured sauce? I wish you guys the best of luck, Sage is such a good kid! You are such a wonderful strong mom and I am sending your family healing thoughts and lots of love.
I hope it is ok but I copied and pasted your post to my friend who is an OT with kids here...apologies if you disagree with me doing that and I will tell her to disregard it if you do, I thought she might be able to give some feedback that would be useful. Of course she might tell me to piss off as she isn't working however I will chase her up on it if she isn't too busy and see what she has to say. She's a good person so I think what she has to say if she chooses to would be good.
I wonder if you could make a crumb crust on top of the mac like I've seen done sometimes with it. You could do it with wheat bran for fiber. I don't know if she'd dig that though, with her texture issues. Maybe there is a brand of pasta that is high fiber? Would she drink a smoothie with lots of high fiber fruit whizzed up into it? If she ate that apple bar thingy and enjoyed it, keep giving her those! *sending curious about food vibes Sage's way!*
I am sending Sage vibes about trying new foods as well. As a child I also had serious bowel/constipation problems, and this was back in the days when people weren't as knowledgeable about the links between food and pooping. Diet was never addressed. I had explotatory surgery at 6 years old,repeated hospital stays, all of it was scary and overwhelming for me. Which probably created even more constipation due to stress, shame, etc. Sage has a wonderful mother who knows what to do and how to find out what else to do. Stay strong, sister!
http://www.novartisnutrition.com/us/productDetail?id=53#Nutrition Information That's a nutrition link for Resource Benefiber. It says that it's pediatric. It's tasteless, odorless and isn't supposed to make food taste any different. Maybe putting a bit of that in her Mac and Cheese or whatever else she eats might help her. Healing vibes and fiber vibes for Sage. And, healing and strength vibes for you, DH, and the kids.
(((((hugs))))) Jenny's food allergies cause her to have constipation. Definitely keep working on eliminating the allergens, it has made a HUGE difference, and she poops every day now! Yes, we also celebrate poops in our home, it's that big a deal. Suprisingly enough, once we eliminated gluten, she started chosing to eat more variety of different foods. Her addiction to wheat was that bad...
Yes I know what it's like to be celebrating your child's poop (((hugs))) Hamish our youngest who has high functioning autism had lots of problems with his bowels when he was younger. In desperation ( after reading around a lot) I removed the two things he constantly craved to eat, milk and wheat and that turned things around completely. I worried desperately about removing these things as he was slight and a very picky eater, but what happened was that he stopped self limiting and gradually over time introduced himself to fruit and vegetables. It did mean though that we moved away from being vegetarians, it's of course possible to be gluten free/casein free and veggie, but not in my opinion when you are living with a growing child who is a very picky eater.
Thank you all for your kind thoughts and good vibes. I really appreciate it. I can't give her benefiber, as any fiber "supplement" or other laxitive with the Miralax can cause severe, dehydrating diarhea. She can, and is supposed to eat actual food fiber, which we are working on. I had a child, my oldest, who had a wheat allergy and some mild gluten problems, I have already done an elimination diet, when Sage was younger and ate more foods, and I am quite sure that this is not the problem. Thank you though, I know it is a common allergen, and that many get results from eliminating it. EXACTLY!!!! I did elimination diets when Sage was younger, but they are virtually impossible when a kid only eats about 10 food altogether. The SND causes ANY variation in her food to be rejected. "Crumbs" on her mac and cheese cause her to literally gag. I don't want her vomiting and then refusing to eat altogether (which, sadly, is a possibilty if we mess around with it too much without professional help, it is beleived that many girls who have anorexia may have SND, undiagnosed, and that forcing them to eat, or constanting "suggesting" that they eat this that or the other thing, or severly limiting what they could choose to eat on their own may have triggered the need to control ALL Their food intake, by not eating at all. We have people with anorexia and bulimea in our family, and I DO NOT want to trigger that. I know my Sage, and I can see her getting into a power struggle if we were to push too much or change things to much, or put too many limitations on her food choices and then just refusing to eat. My God. I don't need that. We are going to stick with the increased water, cutting the cheese down to one serving every other day (got her to eat some soy cheeze instead yesterday) and doing the Miralax religiously. Thank you all for your kind thoughts and suggestions. Some asked if they could talk to an OT for me. That would be fine, Iwouldn't mind. I can't guarentee I will take any OT action on my own, that isn't my specialty, and this is at a point where doing the wrong thing could result in disaster. I know my girl. She is genius level smart, but still IS just seven years old. Children this age still have "magial thinking" and I don't ant to trigger anything that we will have to deal with the rest of our lives. I will look at reasonable, evidence based suggestions, but most likely won't take any additional action until we actually get in to see her own OT. I hope they free up a spot soon. Thank you all again.
no worries! she is busy (like most OT's by the sounds of it!) so if she gets back to me I will relay what she says. I think your points about the forcing of food issues and possible connections with later eating disorders is really interesting by the way.
((hugs)) and healing vibes to Sage, Maggie, and the whole Sugar family! What a strong mama - I agree with everyone up here that if anyone can do this you can!
I've seen ads of late with whole wheat pasta, may be a start to an alternative What about putting veggies into her mac and cheese? Like broccoli which tastes great with cheese (well, in my book). I mean, probably start small with a piece or two that have the cheese sauce on them rather than overloading the mac n cheese right away. good luck hon
Thank you all for your confidence. Ihmurria, with most kids, the veggies in the mac would work, but she picks parsely out of her food, a little chunk of any other than the smooth texture and bland color of mac and cheese would cause her to not eat any of it. Same with whole wheat pasta. I've tried it, and she says, "Ewew. It' black. I'm not eatin black pasta!!!!" (little children often get brown and black mixed.) I'm hoping that once we get into therapy, that whole wheat pasta will be one of the things we can introduce. Thank your your suggestions, though. With Sage it isn't just her not wanting to eat this stuff, it is neurological, And very hard to deal with Things that would work with most other kids simply backfire. With my dd Moon, she would sometimes refuse most of her dinner, if she knew there were cookies in the kitchen. We simply put some plastic wrap over her dinner, put it in the refrigerator, and let her know that it was there if she was hungry, and that there would be no cookies. It worked. After only a few minutes to an hour, she would be hungry and eat her dinner. With Sage, she simply won't eat, and then starts to get so upset she hyperventilates. What SHOULD work doesn't. Which is why we are waiting for professional help. Thank you all so much for your kind thougts and words.
have you ever made your own pasta? I know it's a ton more work and it doesn't make those nice hollowed out pasta's that mac n cheese typically come with, but that way you could mix white flour with a little whole wheat or other vitamin sources in powdered form (assuming they're flavourless) while slowly upping the intake of whole wheat etc with every few batches. But, like I said, it can sometimes be a fair bit more work. I enjoy making pasta when I have the time for it, but that's pretty darn rare these days.
heya maggie, my friend got back to me by phone and it is a long and convuluted business as I am sure you know. She said when she has the energy and is not so over work as she is right now she might be able to post me something but what she did say sounded sensible and good. The basics of it being as you know she really does need to see someone as the diagnosis of these sort of things is super dependant on observation and questioning and getting to see the child in a wholistic manner. She did say that it was on the extreme end of the hypersensitivity disorders from what she could understand and this might even require referral to an OT who specialises in these sort of areas, not sure if that helps but it might be worth researching if there is a specialist OT in the area and at least getting referred to them rather than going through the whole shabam with one only to get referred onto someone whose speciality is this area. There is a huge range of what is considered "normal" however she did say that this sounded way beyond the parameters that were set as "normal" and therfore needed to be looked at. But the main crux of it was yes, you needed to see someone and how sad she was that the waitlists were as stupidly long ther by the sounds of it as they are here...her main gripe being the system rather than the OT's themselves. I do remembr seeing on tv a little while ago on some shocking "current affairs" program the story of a little girl who had such severe hypersensitivity that she had been fed through a tube direct to her stomach and how with this specialist care she had finally learnt to eat normally. It also sounds from what my mate said that the worlds specialists in the area are from the US so you have a head start there! good luck and when and if she posts me something I will forward it on.
