Posted 02 May 2005 - 02:32 PM
Posted 03 May 2005 - 08:30 AM
I could have written this post myself. My daughter is almost three and she can throw horrible tantrums. Today has been one of the worst days in awhile. I finally just had to lay her down for her nap, two hours early. Sometimes she is an angel and somethimes hard to do ANYTHING with. She felt great for over two weeks without any gluten and we had no tantrums. We ate out on Sat. and she must have gotten cross-contaminated food. By Sat. evening she was feeling really bad. We've noticed that it takes several days after she's eaten gluten to recover. She's such a sweet child and I know she must feel terrible. Her doctor said that this Jeckyl and Hyde complex is very common in Celiac Disease. I'm really having a hard time with discipline when she feels sick. We're trying to help her take control of her feelings but sometimes she gets angry for no apparent reason. For the first time today she unbuckled her car seat, while is was driving, because she was mad. I wish I could give you some advise but I just want to let you know, you're not alone.
Posted 03 May 2005 - 08:58 AM
I'm with you--I hate coming down on her hard for her behavior when I know she's feeling so horrible. But I can't just let bad behavior go with no consequences. She's only been gluten free for a few days and hasn't even really started eating much of anything yet and she also has broncitis and an ear infection (we have surgery for tubes next week) so I know it might take a while before my sweet daughter is back.
Maybe someone else has ideas that will help both of us.
Posted 03 May 2005 - 12:01 PM
We started making the transformation to a gluten-free home in December and we can tell a big difference. Having said that, we haven't been very lucky when we've eaten out. Our area dosen't have much knowledge about gluten intolerance and most people don't even know what it is. We've finally decided, after the episode this weekend, we can't eat out for now. We're traveling to a ped. derma. on Wed. and I'm hoping she can shed some light. I'm trying to plan meals to take for the next few days and it's overwhelming. Usually, we can tell a difference in her skin and temperment within four days or so. Kasey seems to be so much better when we eat at home and I think that she is sensitive to colorings, additives, and sugar etc. We're also doing the casin free/sugar free diet for now. I think her problems are made worse by candida. I found that when she's sick things seem much worse.
She needs to have another round of blood work for EMA & tTg but I don't know if we all can stand the gluten challenge. I wish our insurance would pay for the Entero Lab stool test but I don't think they will.
This is a difficult age much less having health problems. I keep hope that the older she gets, the more in touch she'll be with her body and health. Now they have a hard time verbalizing how they feel.
You're in my prayers,
Posted 03 May 2005 - 05:00 PM
you are definitely not alone! The relation between acting out (mainly screaming) and physical state has been clearcut since my son was about 6 months old. He's now 2 1/2 and has been on the diet for just over a year. Jekyll and Hyde was exactly how I described his different sides to the gastroenterologist on our first visit. I am still amazed by how radically he changes when he is feeling off in general, whether it is gluten related, and in his case particularly if he has had even small amounts of any dairy product, but also if he is sick with something like the flu. He is probably reacting to the discomfort (with gluten it is severe pain), but I really think there is some other, I don't know, chemical imbalance reaction going on in the brain. I have seen the mood changes often enough now to be pretty clear that when they're food induced he doesn't have a whole lot of control over his behaviour. THe last time he had dairy by mistake and reacted with a severe and prolonged tantrum about 6 hours later, he became lucid for a few seconds at one point and said "I want to stop screaming!" It's hard to express adequately my feelings about that, but it breaks my heart thinking about what he must be going through in those moments...
Anyway, given that for us it took removing both gluten and dairy before the screaming cleared up, have either of you checked out reactions to dairy? Just a thought. Another thought is this: my husband in particular was very concerned about discipline for the apparent bad behaviour during tantrums (especially because they usually seemed either to come out of the blue or were triggered for the most trivial (in our opinion!) reasons). Our new pediatrician said "Get his health figured out first. Once he's not suffering any more, or at least not as a way of life, then you will be able to go ahead and teach him to control his behaviour, to move past instant gratification, etc etc as much as you want." With this thought we really just put all our energies (and man oh man did we need a lot!) into giving him the best diet possible and being as patient and present as we could. Support for the parents is very, very helpful during this time! Coming out on the other side and seeing the transformation in our son, I'm glad of the road we took no matter how trying it was for a while. Now I can really tell the difference between a normal tantrum (never lasts for more than 10 minutes, which is still a lot, but they're infrequent thank goodness) and a food-induced one (can last up to 2 hours), and I react to them totally differently, teaching and refusal to give in to demands for the first, holding and love for the second.
Best wishes to both of you. Your obvious caring and concern will make the difference in the long run.
Posted 03 May 2005 - 05:46 PM
Thank you so much for your inspiring message. My husband and I are pretty down tonight because of her temperment today. We sometimes get frustrated becuase our medicial team is just now coming on board with us. We noticed the change in October and this has just gone on to long. I'm really looking forward to meeting her Ped. Dermatologist. I started Kasey on a candida diet about 6 weeks ago, no sugar, no dairy and no gluten. She seemed to get better for a few days. Then we would eat out and the cycle of anger and rashes would start over again.
I'm so proud that I've got two coolers full of food for our upcoming trip. Now I don't have to be so concerned about cross-contamination. The last few days we've decided that she needs to be off gluten and dairy regardless of what tests need to be done. Her immune system is taking a big hit. Thanks again for the information and the discipline advise. Most of the time we just have to let her work through it. Until she calms down you can't talk to her about what happened and most of the time she dosen't even know.
Posted 03 May 2005 - 06:42 PM
My daughter, Leah, had bloodwork to check for dairy intolerance, but it was negative. I am keeping her off of it though while she heals.
I'm feeling pretty good today because there were no major issues and she actually took a bit of a nap. I'm just anxious to see my daughter be all better.
Did you guys notice in the beginning of the diet that your child didn't really eat much of anything? Not that she doesn't like the food because even when I offer her some of her favorite things, she turns them down. She seems to be pretty picky with her food right now. Is that normal do you think?
Posted 03 May 2005 - 10:03 PM
A good distinction was made earlier. There is a "normal two year old tantrum" and the kind we see when the physical symptoms set in. Similar coping mechanisms need to be taught, but are much harder for the child with the physical problem. We worked hard at teaching ours to recognize the first signs of a problem, realize what was occuring, and take control of the situation and himself. That gets easier as they get older. Just helping them to stop (literally), look at you, and voice or point out what is not right is the starting point. They begin to learn what they are supposed to feel like and what they feel like when their body is not right. Over time, they learn that they can control their actions even when they cannot seem to control their feelings. Don't we all know some adults we wish had learned that lesson?
Do your best to be patient. Don't give in. Recognize what is going on...the child is trying in the only way they really understand to convince somebody that something is not right. The process of getting them past this takes time and will stretch you to your limits. Don't hesitate to walk away when you sense yourself getting out of control. If the tantrum occurs in a public setting, attempt to get it to a private one. I have had to leave a buggy full of stuff at the store and head to the van to let it run its course.
For some kids, you might find a way to discipline this out of them. For others, especially when it is the result of an illness, disciplining won't accomplish much and will frustrate you both. You know your child. Decide ahead of time what actions you will take so that you are not caught off guard. When you have a game plan it is much easier to follow one.
Last of all, love that kid. Love doesn't stop because behavior is bad. Kids need our love most when life throws them a curve or when they don't know how to ask for it. Let your child see you taking action to help him. Talk to him about what actions you are taking ("Calm down and come with mommy and we will get something to help your tummy stop hurting.") Yes, that's easier once the tantrum is under control. If they see you consistently trying to help them with what is wrong, they will eventually stop turning to the tantrums to get some help. Note that eventually was the key word there. This is not a one time prospect.
Lest I sound holier than thou here, let me say that what worked with one of my children did not with the other. She almost drove me mad trying to find something that worked without resorting to a good old fashioned beating. The worse she felt, the more obstinate she became and the harder she made it to help her. We had to do a lot of staying on our knees. I literally had to tell her that I was going to my room to pray and she had better get to hers and do the same. It was my way of exiting before I lost it. A few minutes of quiet and prayer also helped me to see more clearly and less angrily. We made it through, but it was touch and go for a few years there when she was sabbotaging her diet at every turn.
Hope this mini-novel helps someone out there.
9 yrs gluten-free
...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...
After almost 10 years, I am doing soooo much better!
Posted 04 May 2005 - 07:38 AM
About the tantrums.....we have been on the diet for two months, and things have improved greatly. Although, over the weekend, I can say with almost absolute certiantly that we must have had a gluten accident. I didn't realize how much better the tantrums had gotten until she slipped backwards into one of her doozies. It lasted on and off throughout the day. She would scream, pull her hair, and bang her head on the wall for no apparent reason. It was just like the pre-gluten free days, and I was exhausted by the end of the night. Prior to the diet, the monster tantrums were a daily occurence for us. We never went out, even having people over was too stressful for my little girl.
It wasn't until last week that we finally went to church in over a year.....and for the first time, Emmie was actually happy to go to her class. She used to cry the entire time and was miserable. She used to cling to me like a little monkey, wanting to be held but not touched. She is a different child now, I feel like I am finally getting to know her for the first time. She still has tantrums, but they are much more manageable, and we can reason with her now. We can finally start using discipline techniques like a time out spot. Don't get me wrong, she is still a little spit fire, but I think part of the problem is that she hasn't learned any proper coping skills until now. Screaming and lashing out has been her only way of dealing with conflict until now. So, now that she is feeling better, we have alot of work ahead of us!
I didn't realize how obvious a gluten accident would be until we had one......she went completely out of control the entire day. She also had diarrhea and broke out in a diaper rash. It was terrible. So, you are definatley not alone in this! Dealing with the emotional side of this disease is as hard or harder than the logistics of getting the hang of the diet.
Oh, and Debbie Doodles........I did notice that Emmie didn't eat much of anything about a week after starting the diet. It took a good month I would say before she got her appetite back. I'm not sure what the reasoning is behind it, but she ate like a bird for a while. Before the diet, she would eat ALL the time, and the food would go right through her. Maybe they finally feel full on this diet, so they eat less? I don't know....but Emmie did the same thing.
Posted 04 May 2005 - 08:21 AM
Also, in terms of gluten accidents, I think that the longer my son is gluten free the worse his reactions to even the smallest amounts of gluten are getting. He reacts to a trace amount in the same way he used to react to a full serving (e.g. we had a terrible bout following his taking one (one!) gluten-free potato chip at a daycare birthday party that was made on a production line that makes other gluten-containing items - where the company puts a warning on the package "this product does not contain gluten but sensitive indiviudals may react ..."). I am really hoping for his sake that his reactions will get less severe with age, but a lot of adults unfortunately seem to describe the same thing.
The other thing I just wanted to underline was, Debbie, I know how hard it can be, doing this on your own. My husband also just got back after a month away. But, at least in my case he's not headed right back off again and we basically have things under control (one gluten and one dairy accident, though, during that month). I hope you have good other sources of support!
Posted 04 May 2005 - 09:21 AM
Remember, you are now telling your child they can not have what you gave them to eat days, weeks, or months ago. They are p.o.ed, and are directing the anger at you. Get your gluten free diet replacements ready, read the gluten label out loud, point out the gluten on the label, and tell them it will hurt them, and let them pick from the safe stuff. Give them back the control when it comes to the safe food choice. It is not stupid to read the label to them when they don't understand, because this is how they are going to live the rest of their lives and they will learn more from your actions than the words.
I'm in the same situation. Take it day by day, and give yourself some credit for the great job you do.
Posted 05 May 2005 - 09:43 AM
Posted 05 May 2005 - 07:43 PM
9 yrs gluten-free
...also DH, fibromyalgia, neuropathy, osteopenia, hypothyroid...
After almost 10 years, I am doing soooo much better!
Posted 06 May 2005 - 04:35 PM
When she was on a gluten diet, i think she just may never have had the energy to spare for a full blown tantrum.
Posted 07 May 2005 - 04:57 AM
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