What do you all do?

Hi Everyone,

I hope you all are doing fine,as we all know that the last week before transfusion is a bit tough for all thals,i am just saying "a bit tough" only as a figure of speech other wise i feel it must be VERY VERY TOUGH,when i see Zainab struggling in her pre transfusion week,it breaks my heart,she never complains but i can see it very easily that she doesn't feel very good in her last week,and now with the longer school hours and such a damn hot weather here,sometimes i feel really helpless like why can't i do anything so she doesn't have to go through this last week  i try to keep her well hydrated and make her take a full night sleep,at least 10 hours,but still i feel like i am going through her misery myself.

What do you guys do to make this week easier for your kids? or what do the adult thals do? i really wanna know if i can do anything to make it easier for her.

Thanks.

ZAINI.

Hi Zaini,
This is a problem I also face as my last week has me literally dragging around. I try to drink lots of water and have started trying to eat more healthy stuff. It is hard though, I must agree. I am also taking folic acid but am striving to to keep my blood levels above 10.

Hi Zaini,

It is tough to watch the kids look exhausted just before their transfusions - I find my son's eyes begin to look puffy too sometimes.  How well the kids look and behave seems to control our emotions and our well being too.  When my son looks all pink and perky I light up, and when he looks pale and exhausted I loose my energy too. 

Our pediatrician suggested that we should schedule our busy activities for when his hg is higher, and keep things lower key when he is low.  Also, he suggested that we give him a snack or a meal every two hours to keep his blood sugar levels regulated. 

My son does not like to sleep, he seems to get more active at night and thinks about everything under the sun after I tuck him in at night.  This really upsets me, I worry that he does not get enough sleep. 

Over all, I think that standing by and watching is very difficult.  Whether they are getting IVs, desferal or feeling unwell due to low hg - parents wish that there was something they could do.  All we can do is keep them comfortable and try to create a happy environment for them.   Remember, they feed off of us too - our attitude is very important - and if we take care of ourselves we can show them by example that they need to priortize themselves. 


Sharmin 

Thanks B Thal Girl and Sharmin,

Zainab is a very active child normally,but in this pre transfusion week,i feel like she finds it difficult to concentrate,but it's not like she sits or sleep all the time,i have to force her to go to bed,so that she can stay fresh and attentive in school,because thal or no thal,i think a good night sleep is necessary for every kid,i try to keep her well hydrated and give her healthy diet,but still this last week goes a bit difficult.

Sharmin,you are exactly right that our attitude is very important,i never show my worries infront of her,or never try to over protect her,because i want her to grow up like every other child.

ZAINI.

There is nothing much you can do to boost the energy level of a child. However, just take it easy with the cranky child, some extra care and love will help.

We don't interfere with her schedule and let her be as she wants to be.

Hi all, 

It is nice to hear how everyone handles the days before transfusion.  Canadian_Family, yes the child is the best to guide us. 
And Zaini, it is your positive reinforcement that keeps your little one smiling brightly:)  May she always wear that beautiful smile. 

My mother has always focused on us, often neglecting herself.  Naturally, I have done the same while raising my children, especially because of my son's thalassemia.  I assume most parents are the same way.  A recent blood test revealed that the constant stress and the lack of prioritizing myself is causing some deficiencies - ie. very low vitamin D - nothing very serious at this time.  My doctor took some time today explaining to me that only by taking good care of myself can I be of help to my children, because they need my energy and enthusiasm.  She told me also that the way I have learned from my mother to put myself last, I would teach my children to do the same.  If I want my children to prioritize their health, I need to set the right example.  Thalassemics especially need to set a priority for their well being.  My mother also has told me that she wants me to begin taking care of 'her child' the same way that I would want my children to take care of themselves.  It's a difficult concept for me to incorporate but I am beginning to realize how important it is.  I hope all of the parents here will remember to take care of themselves - it's so easy to forget sometimes.    Wow, what a topic to think about just before mother's day! 

XOXO Sharmin

Happy Mother's day Sharmin to you and to all great mums

manal

 

Hey Zaini,

I think it's best to not think so much about your daughter's lack of energy.

Stressing yourself will only stress her more, if anything at all.

On another note, is it just me or do I not notice a differance at all during pre-transfusion week?

All my life I've never noticed a lack of energy or feel more tired no matter when I need my next top-up... Why is this?

Even I fail to understand as to why a pre-transfusion hb of 10 should bring about such lack of energy. My two sis and I, all the three of us our thal minors maintaining a hb between 8-10. None of us has ever had any complaints. Maybe its more an adaptation problem.
Maha

Thanks everyone,

For your kind words and support.

Sharmin,

You are right,it's very easy to forget about your own health,recently i fainally went to my doctor as i am continuously having pain in neck ,headaches,bones all over my body were aching and i was having a cloudy vision,she told me that along with my low hb stress was the major factor,i was like stress ?what kind of stress? she said you must be stressing a lot about your kids,about them eating properly,taking good long sleep and managing their time schedule,i said so? it's what i am supposed to do, i am a mother,and she was like who would do that if you'll get sick,you need to pay attention to your self,you are not doing any excercise,an you are not eating properly or healthily.Anyways she asked me to get my hb checked,i know it's low,pain in my neck is an obvious indicator,i'll get it checked tomorrow.

Maha,

You and your sisters are very lucky ,when ever my hb goes below 10 i start feeling like shit.sorry for that stupid term,but it's really true.And you must have noticed so many thal minors here complaining about such things.

Vann,

I have a hunch that you might be thal intermedia,because at your age interval of 6 weeks between transfusions ! i don't think it's possible,would you mind telling us at what age were you diagnosed with thal ?

ZAINI.

Hi ZAINI !
I just want to share with you  that usually  I do not feel lack of energy before my transfusions . It is almost the same as any other day. I thank God that this doesn't happen to me. But after transfusion I really make the difference for the first 2-3 days .. I feel more energetic than ever but then everything is the same

Hi Zaini
Yes, we are lucky as we don`t have many of the symptoms most minors complain of. My nephew was one year old when he was diagnosed as a thal minor. His hb at that time was 6gm/dl. He was the first to be diagnosed in our family. Over the years his hb hovered around 7gm/dl until he was 12 years old. Then he stopped falling sick and my sis did not check his hb. When my son was diagnosed as a thal major I had asked the doctor if he could be an intermedia as my nephew who was only a minor had had a very low hb. The doc said my nephew was probably a misdiagnosed intermedia. This time when I was in India I dragged the 17 year old to check his hb. It was 10.5. So probably we are different. A low hb throughout his growing years never affected his growth.He stands tall at 5ft11.
Regards
Maha

Hi Zaini! long time no talk..hope you are doing well, you AND your little ones!

well, in response to your question..

i feel that when i eat something really 'hearty', :khalifa like lasagna or some really delicious rice dish (you know about those ) and lounge while doing so (hehe), i usually feel better with the dizziness and energy and all that...i feel less "sick" lets say...
also..(this is a big one) - when someone plays with my hair, like just runs their fingers through my hair, i usually feel alot better, it relaxes me alot and puts me in a very calm frame of mind.
 or when someone squeezes my arms..especially when my mom still, AHEM, used to do that

so basically my regime is this for the pre transfusion week/days...eat a delicious meal, go on my moms bed, watch t.v , put my head on my moms lap while she plays with my hair, and then squeezes my arms
HAHAHAHAHAHAHAH 
see! it doesnt matter if your 5..or 25!!
HAH HAH HAH!

For me before i have my transfusion i do get tired and need to sleep more so i go to bed earlier or i find i fall asleep on the couch! lol
and for me i actually go off my food and as soon as i have blood my appetite seems to come back! weird!? lol

Hi Sydney girl,

No it's not weird,it happens,i see changes in Zainab's diet too,what red is talking about is something your favourite.

Hey red,

where have you been? i hope everything is fine with you,i try everything that can make her feel comfortable .

ZAINI.