Baby's HB is getting lower

Fever is usually a sign of an infection, which could be anything (colds, flu, ear infections etc.), and this will make the Hb drop. I think a transfusion will probably be necessary.

Hi Andy
She has a viral rash. They also said her heart is a little enlarged. Is this normal for thals?

The heart will enlarge because the Hb is low and the heart has to work harder trying to pump enough blood through the body. I do think transfusion would be well advised at this point.

Feeling really frightened about the transfusions.  as I don't know  what to expect. Do you think it's worth concidering a BMT

Dear Katias Mummy,
Hi . My son is also Thal intermedia and I have watched his Hb drop just like you have. Even though I knew in my heart that he needed the transfusions I was really frightened of them also. The difference in him after being transfused was dramatic even though he had never gotten to the lethargic state. His appetite exploded for one thing. It seemed he couldnt eat enough to satisfy his new hunger and a good weight and height increase followed. It is scary to think of how a baby will handle a transfusion and it is hard to keep them calm initially but I think it is definitely worth it and as others on this site pointed out they soon get used to it. My son has now had 9 transfusions and has progressed to the stage where he no longer tried to pull out the canula and really didnt protest much on its insertion either . I think age is a factor as he is now able to understand that it is temporary and is soothed by words  at 15 months.
Many times the transfusions are temporary in intermedias till the kids are old enough to take fetal Hb inducers. I hope those work for both our kids.
Warm wishes
Zahra

It's always worth it to learn about BMT, so that you can be well informed. This does not mean you should necessarily consider one. Right now you need to get Katia well. A transfusion will be of great help right now. I do think anyone considering a BMT should be aware of all potential side effects so that a well informed decision can be made. We have a thread about this topic at http://www.thalassemiapatientsandfriends.com/index.php?topic=2919.msg28672#msg28672  Please check the lin provided in my post there.

Thank you so much Zahra, it is really comforting to hear from someone who really know's how I am feeling. I am going to see the Haemotologist tomorrow and see what she says. How is your baby now??

Dear Katias Mummy,
My son is doing ok. As i mentioned earlier he has had 9 transfusions so far. his doctors plan is to keep him growing well by transfusing him regularly until he is old enough to try hydroxy urea.That would be until he is two. Hopefully this will increase his fetal Hb enough that he wont need transfusions afterwards. In the meantime his ferritin was 543 last time. They had said to start exjade after it crossed the 500 mark but it was a sharp increase perhaps b/c of the viral infection he had ( we got the results today that it was H1N1) so we will wait and see if it settles to something les by his next appointment. As you probably already know infections cause Hb to drop so his pretransfusion Hb was low at 8.3 this time. Usually its 9.5-9.8. For this reason his transfusion will be after 3 weeks this time instead of 4. I wonder if he would have recovered so quickly from swine flu had he not been transfused and how low his Hb would have dropped. I feel really ,really indebted to the wonderful people who donate blood to make this all possible for my baby as well as tothe great people here who have supported me all the way.
Zahra

Just came back today from the doctor and he Hb is now 6.1, they still don't want to transfuse as it may be that low from the virus so I guess we just have to wait and see. Hopefully she recovers and her Hb picks up.

Latest update on Katia, she has been on wheatgrass supershots for nearly 2 months now and as of last visit her haemoglobin is still very low, at 63. We have a long wait till her next visit in Feb 10 ... hopefully it will pick up.

Katias Mommy,

For a young child, a Hgb of 6.3 is really low. Such low Hgb can affects the growth and development of the child. Even though transfusion sound scary but you will see a drastic difference in your child when you do get her Hgb to 9 and above with transfusion. She will be pink, full of energy and appetite. Many of parents of thal imtermedia children on this forum can vouch for the difference. is there a reason you are waiting till Feb'10 to do anything?

My daughter is Thal major and started transfusion at 2 months of age. Till day she is growing normal and happy and healthy. Me & my wife dreaded the transfusions and the needdles initially. But now we know this is what keeps our daughter healthy and happy. Hope our sharing gives you the strength, if transfusion is the right treatment for your child.

Katias Mommy,

For a young child, a Hgb of 6.3 is really low. Such low Hgb can affects the growth and development of the child. Even though transfusion sound scary but you will see a drastic difference in your child when you do get her Hgb to 9 and above with transfusion. She will be pink, full of energy and appetite. Many of parents of thal imtermedia children on this forum can vouch for the difference. is there a reason you are waiting till Feb'10 to do anything?

My daughter is Thal major and started transfusion at 2 months of age. Till day she is growing normal and happy and healthy. Me & my wife dreaded the transfusions and the needdles initially. But now we know this is what keeps our daughter healthy and happy. Hope our sharing gives you the strength, if transfusion is the right treatment for your child.

 

The doctor was saying that she was growing, she is quite active and she already has a great apetite since she was born. I think the doctor was hesitant of putting her on transfusions while she is growing well. I hope that she is doing the right thing.

Just one thing, I think he eyes look like they have bags under them especially in the morning. Is this to do with Thalassemia??

Have you talked to the doctor about trying hydroxyurea? It may be worth it if you want to continue avoiding transfusions, and if a BMT is a possibility, you do want to limit the amount of transfusions she does get, as it introduces new antibodies to the body. It's a bit easier for the BMT to work if foreign antibodies are not in the body. And the dark circles are most likely related to low Hb. I know you're apprehensive about transfusions but if you choose that path, you will be very happy to see how much better she does. Whatever path you choose, her Hb needs to be higher.

Thanks Andy. We have gone off the thought of the BMT as there seems to be to many risks. But as for transfusions, I know she will probably need to get them but I am just waiting to see what the doctor thinks as she has reccomended against them at this stage. What does hydroxyrea do??