Transfusing BabyI tomm. A bit worried

It's been four weeks now since the transfusion. Problem is how do I know when to transfuse again??? Her hemaglobin was 10 at two weeks after transfusion. But I notice she is increasingly cranky at around 3 weeks. But I'm not sure if its baby stuff or thal related. Now at 4 weeks she is increasing the crankiness and today hardly slept. I think doctor should have checked hemaglobin at 3 week as well. I am a bit confused. Are we suppose to go by hemaglobin numbers only to transfuse next? I mean I don't know if she is teething, having a bad day or needs a transfusion.  It's so hard trying to figure it out. And aren't we suppose to transfuse BEFORE she reaches the crankiness stage??? I'm a bit lost. Please advise. Thanks!

I definitely think it's her transfusion time. When I was young, my parents used to check the redness of blood vessels deep under in my eyes and from that they knew that now it's time to transfuse. Also from the lips. Now, it's a standard routine for me, 3 weeks - 500 CC blood.

And teething is definitely one of the symptoms, when my Hb is low even today (as in whenever) I feel like crushing my teeth or holding them tight and it turns out in low Hb. Never let your child's Hb go down below 9, or keeping above 9.5 or 10 is best!

-P.

I went to have her checked today. It was 9.5. She said we can transfuse next week if I wanted. She said 9.5 is fine. What do you think???

when we started the Tx for our daughter, we went every 4 weeks (we still do)...the goal was to keep Hg above 9.5 ...some try to keep it above 10.0. you don't want her Hg to fall too low. Too low Hgb stresses the body and also affects the quality of life. So, may be schedule every 4 weeks Tx and see how Hgb is doing after few months and then adjust her Tx schedule. it becomes a routine afterwards...

My doctor said wait until its 8. Is that too low?

Oh I just read this thread after the other one about our babies. I will tell you that being thal minor and during my 20s my hemoglobin has ranged from 10-10.5; and for mostly this last decade I have felt weak/low/tired 24/7. I just push through it and never let it hold me back but my point is; babies' bodies and minds are developing at exponential rates; I think when princessM starts transfusing I wouldn't let it fall below 10 either as Bostonian said.
PrincessM's Mama

Hb should not be allowed to drop below the 9-9.5 range.

Hb should not be allowed to drop below the 9-9.5 range.

I agree. As we were discussing pain issues a couple of days ago. Tomorrow, my tx is scheduled and I'm having bad pain in back, head, my jaws and the Hb is 9 as of today, so even 9 is now very low for me. I try to keep my pre tx Hb above at least 9.5 since couple of months.

So definitely, keep your child's Hb above 9.5 and keep chelating!

-P.

Pratik is correct. There is absolutely no advantage to waiting for transfusions. Any doctor following a different routine is not keeping up with advancements in treatment.

Thanks for the responses. Then I'll tell my doctor to do the transfusion because she said she will do it if my baby isn't well. I don't chelate yet since she is 6 months. One question, are there benefits or risks to waiting too long before transfusion? I mean if I extend it will my baby be negatively affected? If so then I would do Tx on e she reaches 9.5.

Hello everyone,

So far my baby has been transfused 3 times. All went fairly well and she was poked one time only. Well this last time went terrible. She was poked 5 times and although they got the vein, it burst and wasn't useful. It was difficult to see especially the last poke. They got her on her hands, arms and feet. It was disturbing to see but you stay strong and try to distract the baby. After the 5th poke I called it off and said I'll be back tomm. The nurses agreed. They had pediatric stat nurses to do the pokes. But like I said they got the vein but it burst. They even got an ultrasound after 3 pokes. I'm going tommorrow and praying it goes well. Seeing her go through it is heartbreaking. But I thank God that we have it better than many so I should never complain. The nurses kept asking if I considered a port. I don't want to see that in her. Besides infection and blood clot, it's a mental issue. With transfusions you go that day and you leave and live your life normally. Seeing a port in you makes you think about it all the time. I wish they would stop suggesting it as if I am the one making her go through this. How do I politely tell them to stop suggesting it? Is there anything I can do to help her veins from popping (if that's at all possible)

Hi there, I have been through the same situation. The hospitals always want the port because it is easier for them. You are right in saying no...besides infection it is totally not neccesary. After the transfusion you go home and that is it till next time.

My daughter is almost 3 and has been going for transfusions every 3 weeks since she was 6 months old. The beginning was the worst because they couldnt find a vein...now its one shot. We started requesting an IV team and have been lucky to get the same person each time. Hang in there and please know you are never alone!

James

YES stand by your decision! If u do not want a port, don't let them  talk u into it. My 3.5,year  old got up to 12 pokes at his 4 month transfusion. They even tried to poke him in the head. The first 6-9 months were really horrible but the good thing is that they won't remember. My doc even told me  that I was torturing him. I mean, u may have to consider it if they r older and finding a vein is impossible...but that's only if u WANT to. I hate to see simply no ports because y docs all have different opinions and every child is different. Your little one is a baby and this is very normal.

My oldest was poked and prodded until we found an amazing nurse. My youngest was lucky to have her...he didn't go through even half of what the other did. Now they both get lucky with in 3 tries for the most part. I am dreading the end of the year though...she goes on maternity!!!!

Hi,
I remember someone told me that hydration helps. Its easier to find a vein in a well hydrated baby.
All the best.
Zahra

Zahra is absolutely correct. Start hydrating your baby very well after dinner time the night before. This may mean more diaper changes during the night but it's better than blown veins.