Thalassemia and Nutrition

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Offline Sharmin

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Thalassemia and Nutrition
« on: November 23, 2008, 07:14:06 AM »
Getting young children to eat nutritiously can be a challenge.  Often times parents get tired of their children refusing to eat nutritious food and then allow them to eat 'whatever' so that they are 'at the very least' eating something. 

This can lead to trouble in the long run for any child.  For a child with thalassemia this can be devastating.  Children with thalassemia need to have a balanced and nutritious diet because their bodies have to deal with the oxidative stress of iron and they need to restore nutrients that are being depleted from their bodies by hemolysis (such as Nitric Oxide) or by chelation (such as zinc and calcium).   

Children don't always like to eat healthy, just as they don't like needles for desferal or IVs for blood.  We as parents have to put forth a continuous effort to ensure that our children are consuming the necessary foods, getting their desferal and blood as necessary.  We need to make sure that they are drinking enough fluids - especially because they are taking chelators such as Exjade.  It is important to ensure that the vitamins and minerals that they are not able to get through food, that we supplement them adequately.  Children with thalassemia need calcium, magnesium, vitamin D, zinc, vitamin E etc. (mentioned in supplements for children) to deal with the stress of thalassemia on their bodies. 

We cannot control everything, but we can certainly give them the edge by making sure that their bodies are in good condition to deal with whatever thalassemia brings there way.  Although this is not an easy task, and we can all improve I have a few ideas on how to do this:

Purchase only healthy foods for children
Offer healthy snacks throughout the day
let your child chose which of several healthy foods they would like to snack on
tell your children about the positive qualities of nutritious food and what impact it has on their bodies and remind them often
tell them also about the negative effects non-nutritious foods have on their body
tell them why certain nutrients are necessary and how they protect their bodies 
try to keep it positive, let them know what they are gaining rather then trying to scare them
have your child eat a few spoons of their favorite yogurt and fruit every morning - they don't need large servings just a little
involve them in the selection and preparation process of nutritious foods
expose them to different types of food and cuisine
expose them to different types of fruits, vegetables and grains etc

I also tell my children what each supplement or food that I give them does for their bodies.  Knowing how it benefits them makes them personally interested in it. 

I would love to hear ideas from others,

thanks,

Sharmin
Sharmin

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Offline Andy Battaglia

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Re: Thalassemia and Nutrition
« Reply #1 on: November 23, 2008, 08:22:41 PM »
Let's hear everyone's ideas on how they get kids to eat properly. Your tips may make a huge difference for someone else, so let's all pitch in here. We all hear about thal kids with bad appetites and who don't want to eat a good diet. What can parents do to make sure their child is getting enough nutrition? What can be done to stimulate the appetites?
Andy

All we are saying is give thals a chance.

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Offline mother_of_two

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Re: Thalassemia and Nutrition
« Reply #2 on: November 23, 2008, 10:33:38 PM »
Great topic!

I think all Sharmin's tip's are good and working, but there is one thing of absolutely vital importance:
Eat (and generally live) healty yourself
There is no teacher like a good example!!!
If we, parents, spend our free time in front of telly with a packet of crisps at hand, we can't expect out children to play games outdoors, snacking on dry fruits  :hmm

And start from the very beginning, as food preferences get established pretty early in life. My daughter (2 and a half) started to get any food with refined sugar in it only some half year ago. And she doesn't get much of it either and never the ones that are totally not nutritious, containing nothing but sugar and artificial colouring (candies, gellies and similar). Her favourite snacks are ex. dry figs, apricots, rasins, pumpkin seeds. She drinks mainly water, green tea (not sweetened), sometimes fresh juices. She loves veggies and fruits of all sorts, both fresh and cooked. But it's all a result of planned and consistent strategy. Plus we also eat healthy (with small exeptions  :whistle), lots of veggies, whole foods.
I know, it's soooooo difficult to change bad habits (as they are usually easier and more pleasant  :grin), but it's the best investment we can make for our children.

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Offline Sharmin

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Re: Thalassemia and Nutrition
« Reply #3 on: November 23, 2008, 11:04:32 PM »
Thank you mother_of_two for the great tips,  I am making notes!  You are right we need to set the right example for our kids and we need to create good habits.  After all, if habits are difficult to break - then why not create good habits!!

Sharmin


Sharmin

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Offline Manal

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Re: Thalassemia and Nutrition
« Reply #4 on: November 24, 2008, 01:35:40 AM »
Sharmin, that is a super topic and this challange of making them eat does not end.

I agree very much with Mother of two and with Sharmin on all the tips especially

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tell your children about the positive qualities of nutritious food and what impact it has on their bodies and remind them often
tell them also about the negative effects non-nutritious foods have on their body
tell them why certain nutrients are necessary and how they protect their bodies 


From my expierence, each age has its own strategies, for example when my kids were younger, making sure to have at least 5 colours in each meal was something that made them interested in eating. Having at least 5 colours made them actually eat a balance meal, for example, brown for meat, white for rice, orange for carrots, red for tomatos, green for vegtables and so on

Later on, knowing the benefits of food was the more important to them, but also from my personal expierence, i find that when children refuse to eat vegetables for example.. part of this is testing how parents will react. I once talked about my expierence with my son when he decided not to eat vegetables at all. At that time, i insisted and told him that there is no food but vegetables. He was stubborn and didn't eat for one and half days and i served nothing but vegetables. At the end he had to eat because he was hungry and by time he got used to the taste to the extent that when i tell him that we have vegetables soup, he says '' Ummi i want one plate :rotfl :rotfl

Some times when children get little older some wrong ideas control their appetite and attitude towards food and it depends on their personality whether it will be easy to reveal what in their minds or not. This happened to me once with my daughter when by coincendent she was listening to two of our relatives talking about diet and body shape ( it is very important to take care of what to say in front of kids and what not to say ) and she understood that eating food will make you have an awful body and you will br out of shape, she didn't consult with me or asked me whether she understood right or wrong, but she decided at that time to decrease her intake of food and i observed that she started to avoid finishing her plate and actually she lost weight, you will be amazed to know that at this stage my daughter was only 6.5 years and it took me a lot to understand what was going on until she finally confessed to my mother. At that time i explained to her the correct view ad even i showed her pictures of people suffering from anaroxia nervosa (spelling..) to frighten her i wanted to show her how she could end up

Some other strategies that work too is talking especially to big children about the bless of having food and how  it is a bless that God give and to show them that in some countries people are starving and that God is giving them something that they should be grateful for

From my expierence too, i find my son to be more healthy and energetic when he eats every three or four hours but actually during school times this is impossible because i can not control him, he usually does not eat the meali give him preferring to play and telling me stories about how it fell or how he forgot it or any other thing and the result is that he doesn't eat at all except for some milk from 8 am till 4 pm when he gets back and till now i have n idea how to solve this problem in school daus which is almost the whole year :wah :wah :wah

i think, the personality of each child plays an important role in receiving advices about food and it is a challange for us to see from which part we will address him/her.

These were some thoughts from my personal expierence that i hope would be of any benefit

manal

« Last Edit: November 24, 2008, 01:44:44 AM by Manal »

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Offline Sharmin

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Re: Thalassemia and Nutrition
« Reply #5 on: November 24, 2008, 03:23:16 AM »
Manal - thank you so much for the great ideas :) 

I actually know of people whose kids do not eat anything - even at the age of 3 or 4 - and survive on milk and processed cheese!!!  eeek!!!
The kids look chubby and well, but I cannot imagine that they are healthy.  The parents insist that if they did not allow the kids to drink milk all day that they would starve because they do not eat anything else.  The reality is that they don't eat anything else because they drink too much milk!!  This is an example of how children will eventually eat what we offer them if we take away the less healthy options - as Manal says, that she offered nothing but vegetables until her son decided to eat them. 

The colorful plate is a great idea too.  Also, talking to your children about the importance of nutritious food is very important.  Yikes!  The pressures of being slim etc. are beginning to affect our children at younger ages too.  You handled that very well Manal. 

It is amazing how much we can learn from each other. 

Thank you everyone for your ideas - I look forward to hearing more!! 

Sharmin
Sharmin

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Offline nice friend

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Re: Thalassemia and Nutrition
« Reply #6 on: November 24, 2008, 06:43:07 AM »
Hi All ,
its looks like the Rain of good Ideas .... Thank you for sharing such a super good experience and sharing how you controled the situation ... specail thanx to Manal Sis , you you were superb to find out the solution . hey does your kids Watch Cartoon Network ???? ... and on Cartoon NEtwork a cartooon named " Kids Next Door " if not then prefer them to watch those cartoons ... heheh ... :grin ....  you all shared superb ideas soo special thanx to all of you .....

Best Regards
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

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Umair

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Offline Manal

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Re: Thalassemia and Nutrition
« Reply #7 on: November 24, 2008, 06:52:39 AM »
Thanks Umair for the  compliment :wink

Yes they watch ''kids next door'' but i prefer Disney channel more cause cartoon network has many aggressive and bad language cartoons. I really miss the innocent cartoons at my time :biggrin

manal

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Offline nice friend

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Re: Thalassemia and Nutrition
« Reply #8 on: November 24, 2008, 11:44:10 AM »
AWwwW Manal ,
Sis , you opened the door to sweet memories .. those days of my childhood wow .. . Swat Cat , Thunder Cat , Captain planet ( very informative cartoon ) , Voltron , Tom & Jerry ( My Favr8 ) , Johny quest , The Lion King  and alot more cartoons .... ahhhh ... how cool was the cartoon in 90's  wow ....  i realy miss that sort of cartoons .. and Zaini do you remember the " Ainak Wala Jinn " how cool and popular that was ... how cool was our cartoons era was  :biggrin ...

Hi budddies , i know its out of topic and its out of this board's topic but :grin accept it ...


Take Care
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

Re: Thalassemia and Nutrition
« Reply #9 on: November 24, 2008, 02:21:49 PM »
A stubborn child would not react to any strategy. We have seen children who can eat well if food is made of five different colours, snacking on dry fruits, learn from the parents, etc. Even children would eat anything due to fear of getting a needle from the doctor.

Some children simply not budge, you can make five different foods with great tasting options, still they refuse. It is a problem that is very unique with a child. Most kids would eat one way or other, but a very small percentage would not budge an inch.

I read everything that has been said here, we had tried everything in the past. Food with different options, love, example, etc.

As a parent we never exposed my children to soft drinks, candies, or junk food. They still don't know how coke taste like at the age of five.

In some children, this is a behavioral problem and should be addressed by experts. We are planning to see one.

My son and daughter would vomit and not eat for two days if they don't want to.

Example one,

My daughter simply refused pedialite or water when she was having stomach problem, we all know she ended up in a hospital for five days and fluids were given to her via IV. The diagnosis was severe de-hydration and stomach infection.

Example 2

She got osteoporosis, simply refused to eat caltrate, eat yougurt (we had tried atleast 10 different flavour), all sorts of milk option (chocalate, vanilla etc.). We had told doctor her situation and they basically can't do anything themselves. The doctor ordered two yougurts in front of us when she was getting transfused and she refused.


Regards.

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Offline Manal

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Re: Thalassemia and Nutrition
« Reply #10 on: November 24, 2008, 03:21:16 PM »
hi Canadian Family

I too agree with you,cause my nephew is a very stubborn child and he refuses to eat too no matter what you do to him. He is 2.5 years and still eats the Gerber jars.

There is one important note about vomiting. Make sure that she is not suffering from reflux caused by having a weak sphincter ( the muscle that is between the oesephygus and the opening of the stomach and acts like a lid to close the stomache) Sometimes when children have reflux, it makes them unable to eat everything and in big portions. It they cried or get nervous and even played a lot after eating they ususally vomit. They can vomit with each meal and the best thing is to divide their meals into portions so always to keep the stomache half fulled

manal

Re: Thalassemia and Nutrition
« Reply #11 on: November 24, 2008, 05:20:00 PM »
Hi Manal,

They would only force vomit when they do not like something (pretend vomit), otherwise they can gobble down anything they like. examples, pasta, cheeze pizza etc.

The vomot is an indication in these children that don't force us, it is not necessarily a medical condition.

PHEW!!!
Regards.

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Offline Manal

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Re: Thalassemia and Nutrition
« Reply #12 on: November 24, 2008, 11:20:05 PM »
Hi Canadian family,

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They would only force vomit when they do not like something (pretend vomit), otherwise they can gobble down anything they like. examples, pasta, cheeze pizza etc.

children are really so smart :rotfl, they don't stop testing us. I f i were you i will say ''okay if you vomit, we will eat the same meal once more''  But it is really very good idea to consult with a specialist as they really have many strategies that we parents can miss, because we take it on our nerves. Good luck and keep us updated :hugfriend

manal


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Offline jade

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Re: Thalassemia and Nutrition
« Reply #13 on: November 29, 2008, 03:32:44 AM »
Hi guys

I am so familiar with all that you are saying.  As I was saying in one of my previous post, I had so many problems with my daughter regarding eating.  At 6 mths old, she would vomit whatever I would feed her( after every meal).  It went on even when she was put on puree.  The situation continued until she was 1 1/2 yrs old.  Needless to say that she was grossly underweight and had small stature.  I thought that there was something medically abnormal and I also brought her to doctors but they could not find any solution.  She was very very stubborn. One day I finally decided that things could not go on like this, I gave her a very small bowl of puree which she took  2 painstaking hrs to eat and on the final spoon she vomitted everything.  Well guess what, I said enough was enough she will eat whether she likes it or not and I told her that since she has vomitted everything she will have to start all over again.  I brought another bowl which she again took 2 hrs to swallow but when there was indication that she may vomit again, I told her that she would start over another bowl and she stopped vomitting from then on.

However she is still underweight.  There is a supplement in form of juice/milk which doctors usually give to patients who cannot eat, there is one for adult and one for children.  I was telling my husband and my mother that it would be a good thing to give this to her in addition to the food she takes because she eats so little and they were both against the idea. When she was around 6 years old i brought her to another doctor and he prescribed the supplement mentioned above to my daughter. 

Today she is still underweight, shorter than her friends but she eats somewhat.  She is still picky but then I have to tell her to make her eat green leaves that she will have beautiful hair only if she eats.  This at times work.  Most of the time I have to  cook elaborate food (spicy, smells good, tastes good, looks good).  Even when she goes for outing I have to cook elaborate food.  During the first year at school, she was not eating at all, she returned the food given to her as it was .  Then I talked to her mistress, explaining to her the situation and now the mistress keeps her in the class if she has not finished her meal as everyone else.  Only when she has finished her meal can she go and play.

I also give her B complex vitamins everyday.  This has helped a lot.

That's my story.

Jade

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Offline Manal

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Re: Thalassemia and Nutrition
« Reply #14 on: November 29, 2008, 10:32:32 AM »
Oh Jade,i can feel how you are suffering, it is one of the worest feelings knowing that your child does not eat. I don't know why our children do this to us, is it genes or behaviour or we did something wrong in the way we fed them :huh :huh :mad

manal

 

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