However, 3 years of fighting this behavioral battle with Allie and I'm at my wits ends. Between dealing with Allie's behavior issues and being in charge of her feeding and medical issues, I've got my plate full. I am the one who primarily parents the children since Matt works outside the house and I'm the sole one who tube feeds Allie. Not sure why my husband thinks he doesn't have to tube feed her but he hasn't given her a feeding (or medication) in I don't know how long. Even on the weekends, I'm the one who gives her all her feedings. Sorry Matt, I'm throwing you under the bus but I'm only stating the truth!
Anyway, sorry for that soapbox, but after witnessing Allie's behavior everyday, I'm convinced there is something wrong. I set up a special appointment with her Pediatrician to discuss her behavior and to get suggestions on how to help us out. Her Pediatrician thinks Allie's behavior is normal and it's typical for her age. Ummmm.....I honestly don't agree with that.
I don't want behavioral help for Allie simply for my sanity......no, it's bigger than that. I have two major concerns when it comes to Allie's behavior and if one of the items below is true....I would feel awful if I didn't get her help!
1) She could be depressed and we don't know it. With having medical issues and no control over them, maybe she is generally just not happy with life. If she is depressed, I want to make sure we figure it out and help her the proper way. Allie receives a ton of love and affection, especially from me since I'm generally the only person she likes on a daily basis. However being depressed sometimes requires more than just love & affection.
2) She could not feel well. It's possible Allie just feels crummy all the time, maybe her tummy hurts, etc. So, she's just unhappy because she's constantly in pain. She doesn't complain of being in pain but I do know her pain tolerance is extremely high. So, maybe she's just developed a new normal which includes pain and that is why she's acting out.
No matter what is actually going on in Allie's head when her behavior goes astray, I will continue to push for answers. I need to make sure that Allie is okay! I've contacted Dr. Morhland, a Neuropsychologist in Wausau and I'm hoping to get in with him sometime this month. I will push for answers and maybe I'm totally wrong and Allie's behavior is age appropriate, but honestly if her behavior is age appropriate now, I'm dreading the day she's a teenager - lol.
You need to get all of the corn and corn derivatives out of this poor child's diet. As someone who has been living with a severe corn allergy since infancy, I can assure you that ALL of Allie's health, eating and behavioral problems are being caused by her obvious corn allergy.
ReplyDeleteThank you for your comment! I feel that if you would really like to help though, you wouldn't leave an "anonymous comment" We are all adults, don't hide, stand up for what you believe in.
ReplyDeleteI am assuming you are part of the Delphi form, avoiding corn. I know you have a food allergy and it's real and it's serious. But unless you know Allie and work with her medical issues on a daily basis, you cannot state something like, "I can assure you that ALL of Allie's health, eating and behavioral problems are being caused by her obvious corn allergy". I do not post every symptoms Allie has on her blog. So, you see on her blog some symptoms that could be related to a corn allergy, but in reality Allie has many more issues than I post on her blog. So, you do not know her whole medical story, please do not make assumptions.
In addition, Allie was corn & corn derivatives free previously. I worked with several people on the Delphi forum and Allie was 100% corn free. In addition, Allie is tube fed and there is an enteral formula that is predigested and 100% corn free. If you are not familiar with enteral formula, you should research it before making comments like you did above. We didn't just keep Allie corn free for a short time, we gave her months and months of being corn free and nothing with her changed. Allie still didn't eat and she continued to have severe behavior problems. Once we introduced corn again, nothing changed. So, even with a corn elimination test/challenge nothing changed.
Again, thanks for the comment but if you really want to help my daughter, please make yourself known and I would be more than happy to talk to you about it. Keep in mind, this whole issue revolves around one thing, my daughter!
I don't understand how you can dismiss the obvious positive allergy test result that you yourself admitted caused open holes in your child's skin? It could take months of being totally corn free to show positive results. Most people are not aware of how much corn is hidden in and on our food supply. I don't believe that you were totally corn free at the time you tried the corn allergy diet.
ReplyDeleteHave you checked the ingredients for the Boost Kid Essentials 1.5 that you are feeding Allie???? I'm assuming that you are still feeding this to Allie. There are many corn derivatives in this product. The second ingredient on the list is Maltodextrin!!!
PLEASE check the Connor list of corn derivatives at:
http://www.cornallergens.com/list/corn-allergen-printable-list.php
BOOST® KID ESSENTIALS 1.5
Ingredients
(Vanilla) D
Water, Maltodextrin, Soybean Oil, Sodium Caseinate (From Milk), Sugar, High Oleic Sunflower Oil, Whey Protein Concentrate, Medium Chain Triglycerides, Calcium Caseinate And Less Than 0.5% Of Tricalcium Phosphate, Potassium Citrate, Soy Lecithin, Cellulose Gum And Gel, Magnesium Phosphate, Choline Chloride, Carrageenan, Potassium Chloride, Sodium Chloride (Salt), Ascorbic Acid (Vitamin C), Natural And Artificial Flavor, Potassium Hydroxide, Taurine, M-Inositol, Beta Carotene, Ferrous Sulfate (Iron Source), L-Carnitine, Alpha Tocopheryl Acetate (Vitamin E), Biotin, Zinc Sulfate, Calcium Pantothenate, Vitamin A Palmitate, Niacinamide, Copper Gluconate, Manganese Sulfate, Vitamin D3 (Cholecalciferol), Riboflavin (Vitamin B2), Thiamine Hydrochloride (Vitamin B1), Pyridoxine Hydrochloride (Vitamin B6), Sodium Selenite, Potassium Iodide, Vitamin K1 (Phytonadione), Folic Acid, Chromium Chloride, Cyanocobalamin (Vitamin B12), Sodium Molybdate, BHA And BHT To Maintain Freshness.
Anonymous, I think you need to go back and read previous entries in this blog before you simplify everything as you have. Comments like this: "I don't believe that you were totally corn free at the time you tried the corn allergy diet.
ReplyDeleteHave you checked the ingredients for the Boost Kid Essentials" are very dismissive and are never going to convince anyone to listen to what you have to say.
In this post http://alliesabnormalappetite.blogspot.com/2010/12/allergy-test-results.html they discuss the corn products in the Boost Essentials and other items. Allie was corn free for many months.
I am glad that eliminating corn products solved all of your issues, but that does not mean that it will work for everyone. Please do not be so dismissive of Allie's mother and assume that you know more than all of her doctors and caregivers.
"Anonymous"
ReplyDeleteIf you knew all of Allie's medical history, you would know that we were feeding Allie the Boost Kid Essentials up until the point that her patch allergy test came back positive to corn. Once she received the corn allergy diagnosis, we removed that formla immediately. She was put on an elemental formula that was predigested. This elemental formula is given to kids who are allergic to all foods - so I know for a fact it's corn free, not to mention the numerous times I talked to the manufacturer to verify it was corn free. Allie was nothing by mouth and only receiving the elemental formula through her tube. So, thanks for questioning if she was truly corn free, but there is no more black and white way I can put it - Allie was corn free. I am the one who monitors what goes in Allie's mouth and in her feeding tube - not anyone else. I know there are a lot of corn derivatives, but honestly I'm a caring mother and when Allie was diagnosed with a corn allergy, I did everything possible to determine what corn items were in products. So, please do not assume that I didn't do research, I did. I might not know as much as you about the corn allergy, but trust me, I'm no idiot.
In addition, if you knew all of Allie's medical issues, you would know that after her initial patch allergy testing that showed a severe corn allergy, we did numerous other allergy tests and even seen numerous Allergist about it. There is a proven fact that many children who show a positive result to corn on their patch allergy testing, are actually reacting to the mixing agent used in the actual corn they put on your skin. The kids aren't reacting to corn - it's the mixing agent. Allie had a severe reaction to the mixing agent - not the corn. Allie was part of a study for this and she happened to be one of the candidates that reacted to the agent in the mixture. I understand that not all allergies show up on testing, however I don't think it's obvious that Allie is allergic to corn for the following reasons:
1) Her patch allergy testing was a false positive, she had a reaction to the mixing agent.
2) She had RAST blood allergy testing that came back negative (numerous tests from different allergiest)
3) She had skin testing that came back negative.
4) And the biggest one is we did the elimination challenge with corn and nothing changed.
I do not feel that I need to prove my point any further, especially to someone who won't share their name. I appreciate your input but please don't make assumptions about my daughters medical status especially since you don't even know the whole story. You didn't even know what formula she was on - you assumed I continued to feed her the formula with corn products. Seriously - I'm smarter than that so please give me some solid information with proven facts next time you leave a comment. At this time, I have ruled out a corn allergy for Allie but that's not to say I won't look into it again - so if you have proven information to share, please do so. Until then, thanks for making your thoughts known.
Anonymous.
ReplyDeleteIf you knew this family or this mother you would not be so quick to judge. You have made a snap judgement based on your experiences. Although, I am sure everyone here is glad you have figured out your medical issues, trust me when I say Jodi will not stop until she figures out Allie's medical issues, and she will. Jodi is smart, tenacious and above all a GREAT mother.
Allie has been given the best care possible. Jodi has been to many doctors and tried every treatment recommended and many she has researched. You say "poor" Allie. I say lucky Allie...that little girl is blessed by a wonderful family who will not rest until this mystery is solved.
One final note. I hope your comments are intended to "help". You seem to have a wealth of knowledge. Please re-read your comments and strive to be a postive influence instead of a distraction. Also, I believe you should stand up and be a MAN?? WOMEN??? ADULT?? If you have helpfull suggestions I know Jodi would love to hear from you. If you are only going to take away from Allie's care and insult a wonderful family, maybe you should just zip it.
Hugs Jodi, I am praying that the doctors can help figure out the behavioral issues you are concerned about. As far as the folks questioning your parenting skills, they obviously haven't read all the blog posts or ever noticed your concern. I remember when you all were doing the corn free trial I was so impressed at how thoroughly you went through every single piece of food in the house. I was shocked to hear that some apples contain a wash that derives from corn...who would have thought that! Again from one tubie mom to another, praying and hugs friend!
ReplyDelete