I posted an update. Thanks for the support ladies! I'm sure I'll be tapping into your knowledge as the weeks progress! :grouphug: Dorinda ETA I really can't tell you how this thread has carried me through this last week. I just kept thinking, "We are not alone. There ARE moms out there that get it." :)

DD has been sick for a long time. You can read the story here, but I thought I'd post an update/prayer request. First, a little rant... I talked to her Pediatrician on Monday night and was less than pleased. She did not have the results at that time (I found out later that she was looking at the wrong screen), but she said to me that she REALLY needs me to make sure she gets the allergist's report so this doesn't happen again. I had talked with her nurse earlier and the nurse had told me that they had the allergist's notes from Friday, so I was a little confused. I said, "I thought Dr X was actually very good about getting you her reports, we have all the reports from 3 years ago, right?" To which the Dr Replied, "Well, I don't have Gillian's paper chart in front of me, and if Dr X gets us the new results, they'll actually be in Gillian's computer chart." and then it hit me, this whole time NO ONE WAS PULLING MY DAUGHTER'S PAPER CHART AND LOOKING AT HER HISTORY!!!!!:cursing: This hospital and their Dr's went to a computer system last summer and it's been nothing but frustrating. I do see the benefit, but I was told, as a parent that all the paper charts were being scanned into the system and that's why the clinic shut down last year for two weeks. Now I find out, it never happened for my youngest and it's like she has no medical history... AT ALL! I now have a 3 ring binder, full of printouts, notes, notebook paper to take notes, and DD's blood test results. I've decided I will now insist on all lab results and reports. I know I'm partly to blame here, but the Dr had all the info in her history, she just wasn't looking. So, the good news is, we eliminated corn as of Tuesday, and saw a HUGE improvement. Like new kid overnight! No tummy aches at all for the first time in a year!!!!:party: We'll be going in to do the scratch tests, discuss the plan (which I already know will involve no corn, wheat or soy), and discuss the follow up, which I will be going to :blushing: Thanks for listening and all the :grouphug:! You have no idea how much I appreciate it. Blessings! Dorinda

Do you need a prescription for that? We have some compounding pharmacies here, I might go that route. Thanks, I never realized it SHOULD be my nightmare. We have known about the soy, but not the corn and the wheat. When I picked up the blood tests on Tues, I was shocked. Today, we go back for the scratch tests to confirm, but just 48 hours off corn she's a COMPLETELY new child. That makes it a little easier to cope with :001_smile: Thanks Jean!:001_smile:

That's fascinating! I'll have to look into that. Thanks!

DD has braces and now we've figured out she has a corn allergy. I had no idea that EVERY child's medication on the market has high fructose corn syrup! I understand cornstarch, but REALLY?!? Anyway, what do I give her post orthodontia treatments? She can't have aspirin yet, so Goody's powder is not an option for two more years. Suggestions? What do you do? TIA Dorinda

:grouphug::grouphug::grouphug:

:grouphug: Death is such a difficult thing to deal with. It's not pretty. Even if you are very close with some one, that doesn't mean you can bring yourself to see them in a hospice situation, and it also doesn't necessarily mean they want to see you. I would never force anyone, especially my children to visit a dying relative, even if they were close. You're doing the right thing. :grouphug:

Thanks ladies. I knew I could count on you! I'm starting to feel a little better. I went to Whole foods last night and bought a ton of food for her just to keep her fed until I can make changes in my kitchen. She slept through the night for the first time in 6 months. It was the best night of sleep we've all had in forever. Then, I went to Walmart today to pick up a couple of things and became completely overwhelmed when I realized EVERYTHING in my kitchen is contaminated.:001_unsure: I keep a clean kitchen, but I never noticed the crumbs in my silverware drawer, or the flour coating everything in the Spice cabinet. I tried searching to see if I have to get rid of everything, or if I can wash everything and every article I found says throw it out, but it's referring to celiac. UGH.:confused: So, I'm trying to figure out what is still safe (not the silverware drawer obviously:lol:) We are running the tests for celiac (I have several relatives with the disease), however, we couldn't wait to take her off wheat to scope her because of how sick she's been. In a way I'm praying the blood test will come back positive because that will be good enough for me, but I know she should really be scoped. We'll see what happens. If you know what I'm supposed to do about the cutting boards, nylon spatulas, measuring cups etc, I would really appreciate any help/advice you can give me. All they told me was eliminate wheat. Right now that doesn't seem very helpful.:glare: Blessings! :grouphug: Dorinda

Sorry, I'm so confused right now, I forgot to mention, dd has a definite wheat allergy. We're trying to figure out if it's just a wheat allergy, or if she also has celiac. So, right now we're waiting on the celiac test results and then we're deciding whether to go forward with the scope or not. I know you can get false positives from the blood tests, but she was so ill, they wanted her off wheat immediately. I'm trying to figure out if we need to replace everything in our kitchen or not. I just don't know. If you don't have a gluten allergy or celiac, should you still get rid of all the plastic, etc in the kitchen and start over? Or is that only with Gluten?:confused: Dorinda

I have to post this somewhere, and I'm too tired emotionally and physically to talk about it out loud, or field phone calls so I'm going to talk about it here, where everyone will :grouphug: me for a couple of days until I get a grip, get over myself, and can talk about it with everyone else IRL. I know it could be worse, but I just feel like the worst mother ever right now, so I need to post somewhere where everyone will understand. 3 years ago (2009) we dumped our Pediatrician (too long of a back story), found a good allergist, and started running tests to figure out why my dd was always sick, fatigued, upset stomach, diarrhea etc, etc, and why her baby teeth did not form right and were rotting out of her head. We walked away from that knowing she was allergic to soy, various fruits, latex, cats, and tons of seasonal allergy things. That was in July of 2009. In October of 2009, I started having health problems again, which resulted in two separate surgeries in 2010. Fast forward to April this year. DD breaks out in a rash from head to toe that started on her extremities, lasted for 6 weeks, also had severe headaches, fatigue, and tummy troubles. She was on several different drugs, and IB so I thought that's what the tummy troubles were from. Week 5 I get the stomach flu and her Pediatrician calls me to tell me she's stumped, it's time to see an allergist. I couldn't do anything about it because I couldn't even pick myself up off the couch, let alone start making appointments. Week 6 I'm better, and we are able to keep the itching and rash under control with antihistamines. I call her to talk to her about the spots, and she says she thinks it's a virus but still thinks it's a good idea to re-test for food allergies sometime this summer. We set up an appointment with a dermetologist for June (soonest they would see us:glare:), and by the end of week 6, dd's rash clears up. However, tummy troubles, and fatigue get worse. She's horribly constipated and distended, so I start working to get her un-constipated because of all the medications. She starts moving again so to speak, but her tummy only feels worse, especially after dinner. We have good days and bad days. No one is sleeping because she's up all night with pain. The pain is above the belly button so I KNOW it's not constipation. My youngest is a drama queen, and so, on Monday, I hit an all time low of asking dd why she doesn't want to be well (she wouldn't do the dishes, but she was playing with friends earlier in the day), and accuse her of lying to me about how she's feeling, and immediately have a flashback to 3 years ago. Same conversation, same situation. So, I apologize, give her an ice cream bar, and DH sit in our room for 2 hours to discuss the next course of action. I called her Dr and her allergist, Dr put her on Miralax, and we saw the allergist today. If you made it this far, God bless you!:tongue_smilie: So, today, we meet with her allergist for the first time in 3 years. The allergist is very nice, but firm, where have we been? Why didn't we come in for follow ups? When these symptoms started, we should have suspected wheat. I asked why:confused:, she starts reading her notes out loud to me. She had tested positive for soy AND WHEAT, but we eliminated soy first. After 14 days, dd was doing so well, we decided (with the allergist) to wait and see how she did, and we were supposed to make a follow up appointment for 6 months later to re-test for wheat to make sure it wasn't a false positive. 6 months later, I was bedridden and having surgery in 3 weeks. 6 months after that, she was still doing well, but the tummy troubles were slowly creeping back in. DH and I had completely forgotten about the Wheat issue and chalked every issue up to stress, viruses, Ibuprophen (braces), soy snuck into her diet, WHATEVER. We never remembered the wheat allergy.:crying: She was very nice, but basically told me this is the child that DOES need to see a specialist for every "little" stomach ache, and rash, and she is positive it is a wheat allergy that we've been dealing with all year. DD missed 21 days of school not counting the days we only did math or reading and I counted them as full days and every one of those days was a stomach ache and/or the rash we've been dealing with. Worst. Day. Ever. I cried the whole way home. The upside is, the receptionist at the Pediatrician's office that I spoke with to leave a message for DD's Dr stopped typing, looked at me and said, "You realize none of this is your fault? You've done the best you could.":crying: *SIGH* I just wish I felt that way. We drew 6 vials of blood today and she is off all wheat starting now. I am so overwhelmed. But, the upside is, I hadn't been grocery shopping because today was payday so I won't be wasting money on food she can't eat. The downside is, we lose our health insurance at the end of the year because dh's company is getting bought out and he will be laid off by then. Some days, I just wish I had never gotten out of bed. Dorinda

I love coffee. :D

No words, just :grouphug::grouphug::grouphug: and prayers. Lots and lots of prayer.

This link is a good start to give you an idea. I have a friend that's a dietitian and she helped me out. I'm 5'5" and I'm allowed 1650-1750 kCal a day. My exchanges are based on that calorie count, as well as my lactose intolerance. I don't have any milk exchanges so I have more protein and carb exchanges. I think that's where you REALLY need the help of a dietitian. Once you're set up, it takes some practice, but it reminds me of weight watchers in some ways. It showed me how little fruits and veggies I actually ate, and how heavy I was on sugar and starches. One serving of fruit is equal to 2 plums! Here are some good links if you want to look into it more: http://diabetes.about.com/od/foodexchangelists/a/diabetesexchangelistvalues.htm http://glycemic.com/DiabeticExchange/The%20Diabetic%20Exchange%20List.pdf This is the book that has become my Bible: http://www.shopdiabetes.org/176-Choose-Your-Foods-Exchange-Lists-for-Diabetes-Singles.aspx HTH! Dorinda

Julie, I'm praying for you guys. You're on our hearts tonight. :grouphug: Dorinda

:svengo: This is why we stick with fish. :lol:

She had pityriasis rosea. It's a virus that causes an itchy rash from head to toe, headaches and mild fever. When they didn't know what it was, they put her on steroids and pumped her full of antihistamines. Then, after a month, they had eliminated everything else and determined that it was pityriasis. This meant she was not contagious and we could get back to life the best we could. She was feeling better on antihistamines (typical toward the end of the illness), so we took her in for some orthodontia work that we had put off because of the illness. She was in a ton of pain so she was on Ibuprofen for several days. That was week 5. At first, her stomach was good some days, bad the next with no rhyme or reason. Then, *I* caught a stomach bug, and we believe she caught it too. She never vomited, but had all the other symptoms. After that, her stomach was bad all the time. Once we got the constipation cleared up (Good Belly was very helpful with that), we knew she was better because the stomach ache is only at night. So now, we're trying to decide if it's better to haul ourselves back to the Dr. . .Again. . .or try one more thing on our own. What is Metametrix? If it is an ulcer from H. pylori or the medication, won't it clear itself up? Sigh, I'm leaning towards the Dr visit. :001_unsure:

Has anyone used Oil of Oregano with success? What did you use it for? How did you administer it? I'm thinking of trying it with my youngest. She is allergic to soy and a variety of other things, therefore, she has a VERY sensitive stomach. She was sick for 7 weeks this spring, and her stomach has not been the same since. When she came off her sickness, she was horribly constipated. It took us two weeks to get her through that, but her stomach still hurts after she eats. She's OK in the morning when she wakes up, but by the end of the day she's miserable. I'm thinking she might have developed an ulcer from the steroids and NSAIDS (The pain is above the belly button but below the breast bone). We've been through three months of misery and I just don't want to drag her back to the Dr for yet another round of tests or medicine. I'd rather try some homeopathic remedies and see if it works. Any advice is appreciated! Thanks! Dorinda

I am now drinking water. We watched Thor, The Incredible Hulk, and Iron Man 2 today (we went to The Avengers last week and felt the need to watch the lead up movies we had missed :) ) So, today, my favorite super hero is The Hulk.:D

:grouphug: praying, praying, praying.

Miss: MFW ECC - What. A. Disaster. Dropped it in November, should have dropped it sooner. Hits: VP History Transitions Online class - I can't say enough about this class. Well worth the money! BJU Math for youngest MUS for oldest GTG for youngest TLP for oldest

Have they scoped her and looked for Celiac or other problems in her intestines? Many Celiac patients don't have any symptoms until they're in their 20's or 30's, but have Vit deficiencies from childhood. Every person in my family that has Celiac was misdiagnosed because their blood panel came back negative, but the biopsy/scope of their intestine confirmed that was exactly the problem. It sounds like they need to actually look at the inside of the intestine and see what's going on. :grouphug: Dorinda

:grouphug:

You have been more than patient. I personally do not mail the money to my landlords. I ALWAYS drop off the check in person and get a receipt. I have always rented from rental companies and they give no lee way. You pay it all in one lump sum by check or money order, and it's there by the 3rd of the month or it's late, no excuses. It is much cheaper to drop it off than to hassle with a stamp, and I have never had any problems like this. A Renter who wants to make payment arrangements, and won't let you pick the check/MO up from her it makes me suspicious. Also, she probably doesn't have a checking account. I know a lot of people who have fallen on hard times and had to drop their bank accounts because they kept overdrawing them. It's a shame, but she'd still be in the same mess with a checking account. I had a lady lose one of my checks, and the bank wanted to charge me $30 to stop payment on it. I just wrote her another one and watched my register for a year. It was cheaper and easier to file a fraud charge if the check ever cleared than to pay to stop payment.:glare: If she won't drop off the MO so she can get a receipt, than I would tell her if something like this happens again, she'll have to come up with the money immediately. The utility companies wouldn't work with her like you have, and you've been more than generous. Blessings! Dorinda

:grouphug: I'm so glad you are going with what works for your family. That's what being a parent is all about, right? :001_smile:

This is basically what we do, and why we only get through one book in a year. I also wanted to mention, Dr Keller has an excellent response to all the questions/assumptions made about her. Go here, and scroll down to "Worldview." HTH! Dorinda