Coping with tiredness before transfusion

How does one cope with the tiredness in the week/days before the scheduled transfusion?

My daughter is 11 months old now and is on a 4 week transfusion schedule. She is a bundle of energy for the first 3 weeks after her transfusion. But in the last week she gets lethargic and very tired even with a little bit of activity. I understand that this is because of the low hemoglobin levels, but how does one usually cope with it - first, as a patient and second, as a parent?

I am trying to understand how can my wife and I can support her during the last week before her transfusion. Is there anything that we can do to ease her tiredness? I don't think asking her to sit still and not play will work as she is a baby, they have a mind of their own

I will appreciate any and all feedback and advice regarding this ...

- Bostonian

We just go with the flow, my daughter is 4 year old and she is really fussy in the last week. We try to listen to her and let her be the way she wants. There is nothing much to it.

Regards

One word of advice, if she's sleepin more then her normal sleep schedule....Let her sleep.

It's the only way i cope with my tiredness before my transfussion is due...If i am bothered i really blow up...so my family has learned to leave me alone right before my tranx is due.

Since i'm working i come home early in the last week and take my beauty sleep but beleive me the last week is pretty bad....If i exert myself too much it's either my boss or my colleagues getting the worst my mouth has to offer  (thanks god they all know bout my condition and joke around by sayin they're comin for u).

When pressure is high, i take alot of liquids specially fresh juices which i believe helps me retain myself. I think it's the sugar which increases my response rate and does away with my laziness.

Just one thing...please dont delay the transx from the date the doc has recommended, its the worst thing you can do since your daughter is so young and in a growing age..... later on in life she will start guaging her ownself and she'll know if the blood is due or not despite what the doc says.

Hi Bostonian!

I have the same exact thing going on with Lauryn. She was tx'd 3 weeks ago, and in a matter of a few days she became  pale and lethargic. Should I wait to go to the md july 9, or go now?

 

Hi Canadian_Family, Zaid,

Thanks for your words of advise ... appreciate it. Well, I guess we will have to play it by the ear and go along with what she wants to do in the days before the transfusion.

We usually do not depart from the usual schedule for our daughter's transfusions ... actually we monitor her more closely in her third and fourth weeks after transfusion, and if we see that she is not quite herself, we call up her pediatrician and the hematology NP to get their opinion. One time she did need a transfusion around a week early (her Hb had fallen to around 7.9) .. and we were happy that we were able to get her transfused before the Hb fell even lower.

Hi Christine,

I guess what I just said must have answered your question. I believe that it is always better to err on the more conservative side when it comes to our kids health and well being. I would suggest that you check with Lauryn's MD and ask him/her if she is willing to see Lauryn earlier than the scheduled appointment. If her Hb has fallen, then it is a good idea to get her transfused.

Regards,

Bostonian

a nice long nap always does the trick. I am now 21 years old and i have thal major. I feel weak and tired sometimes when i need to be recharged and until then i just relax and sleep.