Wish us luck !!

I am too tired to write a completely update with Iphone.  The most imprtant stuff has been rescued. Dad was busy with installing windows but he is travelling for business now. I will spend some days away from home. However I must study hard, and Friday I will  tanking up;)

I am wishing you luck my dear friend! Hoping that you  can do your work a successful one!

Hi Nicky,

Welcome on the forum 

Zaini.

Hello Nicky ,
  to the community , ...

Best Regards
Umair

Hello everyone,

Z's pre transfusion hb last time was 10,at the interval of 4 weeks,so i thought to increase the interval a lil bit and see if she can hold hb between 9.5 and 10,so we decided to go on 4 and half weeks,like she had an appointment for 13th june and we transferred it to 17 june,that is tomorrow,and her hb today came back 8.5,its not only disappointing but a bit shocking too as i was hoping that in case it doesn't stay above 9.5,it must be above 9,and definitely not below it ,but it seems i was hoping too much,anyways now i am confused about her next appointment,should we stick to 4 weeks,or this time i shpould ask for an appointment of three weeks? Any suggestions ? 

What is amazing is that usually i notice that she feels a bit down in her last week,but this time i didn't even notice that,and i was happy and thinking that may be we'd be able to extend her between transfusion gaps to 5 weeks,and then this hb of 8.5  .

We are waiting for her ferritin and Serum Creatinine results and SGPT will be done in the morning,so please pray that these results will be fine.

Zaini.

Zaini,


the most important thing for me - and that is what I have understood from so many years' experience with thal- is first to try to keep your hb at the right level which is definitely never below 10. Do not get your hopes high and think that the longest the interval the better. What's the difference between 4 weeks' time or 4 and a half? None in my opinion. Not even the iron load if you follow a good chelation scheme. There is a big difference though if the hb is 9.5 or 10, as far as the stress of the body is concerned. And little Z needs no stress if she is to evolve normally.
The loss is bigger than the gain.
 In my opinion an hb 10 with an interval of 4 weeks is ideal and together with a low ferritin achievement should do wonders for your little angel.

Lena.

Thanks Lena 

Yes i think i'll have to stick with what you said,hb of 10 and good chelation,i don't want her growth to be effected in any way,and really today's hb came as a big shock as its been months that she ever had hb this low,it was always above 9 and since last few months even above 9.5.I am confused about this time though,because after seeing hb of 8.5 her doc will be insisting on 3 weeks transfusion.

Everything was going fine and now i wanna kick myself for changing it  .

Zaini.

Zaini,

I agree with Lena about maintaining a hemoglobin level above 9.5 but also want to remind you that hemoglobin levels are affected by hot temperatures, so it may be the summer heat that caused the measured drop. I wouldn't worry about why it dropped because it is probably nothing other than the temperature.

Aafwan Zaini,

Do not worry. Even if your doctor insists on making the next transfusion after 3 weeks, you can always  raise it to 4 later when you reach an hb of 10. It does not mean you will remain at 3 weeks' intervals for the rest of your life. In Saa Allah.

Zaini,
Best of luck for lil-z's Hg and interval .. i hope she will recover soon and her pre-tx will raise back above 10 and will remain in that ... Wish u and lil-z alot of luck for evrything .. i agree with wat Lena & Andy has said , keeping HB above 10 is more important than long interval , in growing age .... i hope n wish that everything will back to good - INSHA-ALLAH

Best Regards
Umair

Hi Zaini,

cbc results are not always completely accurate.  For the last two transfusions lil A has been having a cbc before his ivig - for some reason his hg was lower the day of ivig and higher one week later.  Obviously his hg did not increase because his marrow is suppressed, but there is an element of error.  If lil z does not look too low, chances are her hg is higher than 8.5.  A while back lil A's hg at week 3 was 108 and then at week 4 it was 114, that indicates a big range of error. 

I hope that lil z's hg is predictable and high in the future,

best of luck,

Sharmin

Hi Guys,

Thanks Andy,Umair and Sharmin 

Transfusion went well Alhumdulillah,but her ferritin is not budging,its in 1500s since last 4 months,i discussed it with the doctor in hospital today and he said as you are monitoring her well what with all the tests done regularly and everything,you can increase her dose to 800 mg,to see if that changes things,What do you guys suggest? Should i increase her dose to 800 mg or should i stick to 700 mg,her weight hovers between 27 and 28 kg,today it was 27.1 kg.

Good news is that SGPT went down to 49,last time it was 59,Serum Creatinine was 0.7,and ferritin 1552,last time it was 1527.

So any suggestion guys ? about the dose ?

Zaini.

Zaini Sis,
i think you may increase dose for a month to get down iron after that decrease the dose if SGPT elevate again ...

Best Regards
Umair

Zaini,


does she take ferriprox too? if not, why?

Lena.

Zaini,

According to 30mg/kg, she should be in a dose of around 800 mg daily. It may be time to bump it up a bit.