Hope you can answer these for me

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Offline Christine Mary

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Hope you can answer these for me
« on: October 25, 2006, 01:52:20 PM »
Hi to all,

I hope this post finds everyone in good health!

I have two questions i'd like some feedback on. (they dawned on me while I was trying to fall asleep last night).

#1-When and after Lauryn recieves her transfusions,and she has blood drawn,for routine tests,how can they differentiate her "real"blood from the foreign blood that she has recieved?Is there an obvious marker,or will there be confusion determining her blood from the transfused in her system??

#2-Is it more benefitial for a girl to have thal b/c of menstration? I figured two things-she will be getting rid of extra iron (chelate) via this way OR she will be losing the hemoglobin quicker,and will be more tired and require more blood?

Hope you can answer these for me!

Oh! P.s.- A few comments regarding Lauryns @ mo.check up at her Pedi's office.She got 4 shots  :-\ and Both the pedi. and hemo.said the water I use for Lauryn "does'nt matter"but of course I trust all of you COMPLETLEY and started using purified right away.

Also,the pedi. said Lauryn prob.dropped her hemo.quick before, b/c she was going through her nader? What exactly is that?
She weighs 11.9 lbs and her pedi suggested I space her feedings out more. She said Lauryn is prob.eating during the night due to habit? I think it is crucial to keep her fed well as much as possible,b/c eventually she will lose a little weight when she stops feeding as well due to th hgb drop.

At her hemos office, he said she went up a point, but after referencing her previous test results, she actually dropped! Even that statement might not be correct b/c I found out that when they test her hgb,they have a machine AND a lab tech (who does it by hand) do it seperatley.So there is often two different readings.The dr. had one result from one source,and I got the results from the other source. SOOOOOO.... I really do not know exactly where she is at this point. Her dr.said regardless she is at a "safe level" and there is nothing to worry about. What is your input on this one?
I DID ASK FOR THE DNA TEST, and her hemo. said to hold off as long as possible b/c he wants to keep as much of my blood in her system as possible.( i figure since she is functioning off of the hbf?) He doesnt want to make any unnecessary blood draws. Make sense? I asked him if a flu shot can be given to her and he said he also wanted to hold off (didnt give me a reason) and as long as my housewhold was vaccinated,that would be fine. So I had my 7 year old get the shot.(poor kid).Especially because he is in school around little kids all day long.
I wanted to mention her pedi. was giving me a terrible time about giving Lauryn Low Iron formula. She still thinks I am wrong! Please tell me I am doing the right thing?!  :rolleyes

Sorry for the long post!! I hope you guys can help me put on these questions,and any feedback regarding what the drs have been telling me.

 :hug

Christine

Lauryn's Mom

Re: Hope you can answer these for me
« Reply #1 on: October 25, 2006, 04:13:09 PM »
Hi Christine...
 Well. I can answer only a few of your querries...

1. The blood drawn for cross matching etc is so neglible that it really does not change the Hb level of a person..

2. If and when Lauryn needs transfusions, it will be imperative to keep her Hb as high as possible ( 12-13 ) so that she reaches puberty in time and she grows like any normal kid.. normallly under transfused children reach their puberty late and it hampers with their growth etc.. so a girl would need more blood because she is going to loose a lot blood .

3. It is always better to keep any thal child on low iron diet. I dont know if you are breast feeding her.. but that would be the best.. it will improve her immunity too.

4. When she starts her blood transfusion routine, she will not be producing any of her own blood.. it is better to totally supress the production of the faulty RBC s in Thals.. hence the blood cells that are drawn  are that of the donor.. RBCs have a  normal life span of 90 days.. but again that depends who the donor is and how old the blood is.. so the RBCs transfued have a limited life span..so the Hb level is that of the blood she has received which will determine when next to take blood.

5. Hb levels can different from machine to machine.. and a difference of one point hardly matters.. so you might as well take the mean reading to be more accurate..

6. In some babies, the switch to their own blood is faster, so their transfuions starts earlier... while some can go on for some time with the fetal Hb. In my daughters case, she did not need transfusions till age 2-3.. and she could more or less carry on with a Hb as low as 6-7.. but I think that was not the proper method to keep the Hb that low.. but it was 30 years back and things were not that great those days. It is always safer and better for the child to keep the HB level as normal as possible..

Hope I could be of some help...
 How are you doing? It has been a while I wrote to you. I was away for some time.
take care
Love
shikha

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Offline Christine Mary

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Re: Hope you can answer these for me
« Reply #2 on: October 25, 2006, 04:52:52 PM »
Please forgive me if i do not understand....

So what your saying Shikha,is, that when Lauryn gets blood drawn for ANY test in the future,whether its for routine,when shes sick,test platlet levels, it WILL NOT BE HER OWN BLOOD?
If she has numerous donor blood,then how can they tell what she REALLY has? What is her true readings? Wont the test results be false,because there is so many other peoples blood in her system??In a nutshell... How can they tell whats going on with LAURYNS blood??? How can then tell her DNA apart from everyone elses??
Im sorry, I wish I could comprehend all of this  :rolleyes

 :hug

Love
Christine

Lauryn's Mom

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Offline Manal

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Re: Hope you can answer these for me
« Reply #3 on: October 25, 2006, 10:50:47 PM »
Dear Christine

When you do the DNA test, the WBC are the ones which are tested and i suppose that when you transfue you filter the the WBC of the doner and you don't use them.
Chrissy, i think it is very IMPORTANT to do the DNA test for Lauyrn because she could be intermedia and not major. If you start transfusion, she will be dependent forever even if she turned out to be an intermedia.  Imagine that you didn't know that your husband and you are not carriers, you would have known nothing until she is 8 months (if she is major) or until she is 6 or 10 or even 15 years ( if she was an intermedia ) . Remember my son didn't transfuse till now although his HB is 6 - 7 but he is active and doing well at least clinically.
My point is that don't let her dependent on blood transfusion unless you are sure she is a major. Nobody will know except through DNA test.
Take care
Manal

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Offline Christine Mary

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Re: Hope you can answer these for me
« Reply #4 on: October 25, 2006, 10:55:20 PM »
Manal

What great advice!! even though all of her mds SWARE she is major, i will demand it be done beforehand! It cant hurt!

Lauryn's Mom

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Offline jzd24

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Re: Hope you can answer these for me
« Reply #5 on: October 26, 2006, 01:12:31 AM »
Wow! Great questions and amazing answers. I didn't get that kind of info until I was in my 40's! What a fantastic resource the people on this site are. I agree that the DNA test is really important - you need to know if she has major or not.  Also, about eating at night, I know when my hemoglobin is low, I have to eat all the time. Anyway, good luck with everything. Jean

Re: Hope you can answer these for me
« Reply #6 on: October 26, 2006, 04:54:46 AM »
Christine

Remember.. that transfusions are given only after the blood is totally crossmatched on all accounts.. DNA is  the gene mapping.. and she will only be given only ger packed RBC s and no other  component of the blood.. so the rest of the components  are hers...

Thals have faulty RBCs.. there is nothing wrong with the rest of the components of their blood...
So by giving outside RBCs you are going to totally supress the production of the faulty RBCs and nothing else....
Is that bhelpful now ?  :smile2

shikha

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Offline Christine Mary

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  • Gender: Female
  • Mother of Lauryn, who has Thal Major
Re: Hope you can answer these for me
« Reply #7 on: October 26, 2006, 01:24:17 PM »
Thanks so much Shikha!  :hug

I understand completley!!! (FINALLY)!! lol :biggrin

Lauryn's Mom

 

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