My Baby is getting first transfusion tommorow

Hello All,
Thanks all for ur support and wonderful information provided.
My baby boy is getting his first transfusion tommorow. His hemoglobin is 7.0 when tested yesterday. The doctor has ordered for RBC antigen testing, is this the genotype testing? What is pheno type testing. Please inform if I need to do anything else.

Thanks
Meena

Right now I am exclusively breastfeeding him. What precaution(foods to avoid) etc, do I need to take so his iron is not overloaded.

Thanks
Meena

Good Luck Meena,
I am in the same boat as you so understand what your mind is going thru' at this moment.
I will pray for ur baby. How old is he now? What was his hb last month? Is his growth fine? Is he playing and drinking milk etc fine? I was talking to another mom (in the same situation), she told me that she is not giving cereal to her baby as it is high in iron content.
Pls. let me know how he does after the transfusion. My doc. has told me that they give Bendryl for the rashes, has your doctor spoken to you about that?
I have also spoken to my doctor for genotyping, it has not been done, so far for my son, Sharmin has strongly advised to do it.she can tell you abt. what it is.
All the best.

Hi Meena,

Sharmin can definitely tell you more about genotyping and phenotyping,i am a lil dumb with this technical stuff,one thing i want to remind is that make sure that you use filter to remove leukocytes to prevent any reaction.

About iron in food,red meat is a very high iron source,along with green leafy vegetables,but iron in in meat is called heme iron which is readily absorbed in the body,while iron in vegetables is non-heme iron which is not that easily absorbed,so when he grows up,try avoiding red meat,instead give him chicken.eggs,fish,fresh fruits.

Good luck with the transfusion 


Zaini.

Dear Meena,

The RBC antigen testing sounds like the phenotype testing.  Genotype testing is the most sophisticated testing that you can have.  I am glad that the phenotype testing is being done because after transfusions it can no longer be done - the genotype testing on the other hand can be done anytime.  It is best to have both tests done because together they provide more information. 

The better matched blood that your child receives the less likely antibodies are to occur.  As I have mentioned before, if my son did not have antibodies thalassemia would be a breeze for us. 

The doctors and nurses will give the first transfusion at a very slow rate and watch your child very carefully so don't worry.  They may give antihistamines as well.  The first few transfusions are very difficult, your child will cry and you will wish that it weren't happening.  I had the same experience, but trust me over time it becomes much easier and you realize that because of the transfusions you have a very healthy and normal child.  Try to remain calm and matter of fact during the whole process, your child will learn to be more calm too.  Try to make your time at the hospital calm and relaxed so your child will inherit this attitude toward the hospital - try to make it a time for fun and bonding and you will learn to enjoy transfusions as a family.  Be sure to have your favorite food etc with you so that you can make it more positive.  Remember to take care of yourself, you are going through this with your child.  Please share your experience with us when you get home. 

Genotype testing is done at specific places - so samples are taken and then sent to special labs.  But it is very worthwhile to have them done. 

Best of luck,

Sharmin

Hi Meena,

this is a good list of food very high on iron, you can use this for reference.

While selecting your  food, you can avoid/minimize these.

http://www.thalassemia.com/iron_foods.html

Best wishes to your baby,may everything be well with your baby.

Meena, good luck and please update us

manal

Hello All,
My baby had the blood transfusion on friday. He did not develop any fever, but developed rashes all over his body. Today his rashes are reducing but he is appearing very weak, spitting up, not sleeping and he appears to be losing his color. This is making me worried. Is it normal? He is 10 1/2weeks old.

Thanks
Meena

Hi Meena,

The rash is typical after transfusion and often benadryl will be given during transfusions to counter the allergic reaction. All transfusion reactions should be immediately reported to your doctor. I do not want to speculate on the pale skin and it may even be not related to the transfusion but you should report this to your doctor.

You do not need to watch iron intake while breastfeeding. This could lead to anemia in yourself and has to be avoided. Breast milk contains very little iron (it is absorbed at a very high rate, 50% in the baby, so there is no need for the your body to load more iron into the milk) and will be no danger to your baby. It is far more important that you eat a good balanced diet so that the baby is getting all the necessary nutrients. There is nothing better than breast milk for any baby so please continue to breast feed for as long as possible.

Dear Meena,

My son had a rash after his first transfusion as well - he was 3 months at the time.  His rash was due to the hospital linen and it remained for quite some time afterward.  We then started to keep him in his own clothes during the transfusion and we took in our own blanets and pillows, this prevented the rash. 

The rash may also be due to transfusion so do notify your doctor.  Some children vomit after a transfusion and others also develop headaces.  My son does not have these particular reactions, but a few other children that our transfused at our hospital do.  Children's color can change often depending on how they are feeling, if they are warm, cold, hungry etc.  My son often turns pink after a meal and when he is warm. 

The best place to check for color is the mouth, if the tongue and lips are red then the hg is usually good - but if the inside of the mouth is pale then the hg is low.  It is a good idea to note your observations and share them with your doctor.  Did you have the phenotype of genotype testing done prior to the transfusion?  Was a leukocyte filter used? 

As Andy has said, please keep your nutrition up because it will give your child an early advantage if you are eating nutritious food and breastfeeding him.  Also, you need to keep your own nutrition up.

Please keep us posted,

Sharmin

... any rash during transfusion is not good...rash should not happen, with the use of filter.. if a rash develops while the transfusion in on.. as far as my knowledge goes, the transfusions is stopped immedietly... or an anti allergic medication given, wait sometime before again starting the transfusion...
I am sure the doctors wil know better when handling a 10 week old baby... but I just hope you are being looked after by someone who knows about thalassemia..
After transfuiosn, the baby should be more energetic and not drained...

hi momofShreyas, i am sachin from india. if u trust me than i will tell u a simple thing give your dear following formula fresh wheat grain & olivera srick juice. just mix these item in juicer try it for a month. NOTE: the wheat pluked after 8th day when they plantation.

I believe this recommendation is to take wheatgrass juice and aloe vera. (I try to be the translator for those whose English is a bit rough. I hope everyone understands that I am here to help as much as I can and that I am also personally a bit embarrassed that I know only one language, so please don't anyone ever feel bad about their English. I wish I knew as much language as all of you do).