Discussion Forums > Thalassemia Major

Feeling Down...

(1/5) > >>

Christine Mary:
hi everyone.

i thought you'd like an update on Lauryn. Her hgb dropped from a 9.9 to a 9 in 3 weeks. I am a little depressed knowing the day will come shortly that she will have to tx. the md says her body is starting to recognize the "failing hgb"levels. her body is working hard right now.  :'(
the dr. spoke of the port again, and i frankly told him i would only resort to that in a "life or death" situation if need be. he understood my point, and hopefully we will never have to discuss it again. other than her hgb dropping, she weighs 12.9 lbs!( she was born at 7.5) lol. she is also a little over 22 inches long. she def. is a big girl.:) her heart and spleen are perfect. her nails and tongue are pink and her eyes are as white as cotton. considering ALL factors, she is doing great!!! :cloud9 he wants to see us in 2 1/2 weeks, and im not sure if we'll need to tx her then. he says he wants to tx her when she reaches the 7ish range. hopefully that will be some time from now.  :pray maybe after the holidays?? :dunno
is there a possiblilty she can maintian a certain # for a prolonged period of time? Like,can she remain a 9 for 3 months??? That would be miraculous!!! wouldnt it?  :love
i know its natural to have ups and downs,but if anyone can lift my spirits up,please do. :sigh i know if anyone can it would be you guys. hearing about the 19 yr old who just passed,made me feel horrible.
im hurting so much for my baby.  :'(  

Love to all,
Christine

Bostonian_04:
Hi Christine,

It is good to hear that Lauryn is doing good and from your posting I see that see that she did not need the tx yesterday .... that's real good. So, don't feel down .....

I do have a word of advice though :) Since Lauryn's hemoglobin is at 9 now, I would suggest that you monitor her closely so that you can pick up the first signs of anemia quickly and early - listlessness, lack of  interest in feeding, paleness of lips, etc. I am sure that she will not show these signs in weeks to come and will be able to maintain her hemoglobin in the high 8's (given that she dropped just 0.9 in her hemoglobin count in 3 weeks)

You had indicated in your post that Lauryn's doctor has indicated that they will wait till her hemoglobin falls to the 7 range before they transfuse. Our daughter's doctor (at the Children's Hospital, Boston) had a different take on this - he indicated that for infants he tries to keep the pre-transfusion hemoglobin level in the high 8's. Different doctors have different opinions on this so don't be alarmed :)

I would appreciate comments from the other members of the forum on this as I am not an expert on this .. and do not have any experience except for what I hear about my daughter from her doctors.

Take care .. hugs to Lauryn

Bostonian

Andy Battaglia:
Bostonian,

I think what we are seeing is a change in thinking regarding Hb levels in the very young. Previously, thals have been pretty much lumped together regardless of age in terms of what Hb level to maintain. The newer approach takes into account that children, and especially infants are developing at such a fast rate that low Hb levels can have a significant negative impact on development, and thusly, higher Hb levels are now being recommended so that as close to normal physical development can take place. Whereas an adult may be able to get by at an Hb of 7, an infant will not develop properly with an Hb that low.

Christine, I would seriously consider a visit to the Oakland Children's Hospital for advice. The first years of your child's life are so important in terms of physical development, especially the bones and organs and everything must be done to ensure that it proceeds. A comprehensive care program early on will make sure that Lauryn's development is at its optimum. I agree with Bostonian that you should closely monitor Lauryn for any changes in health or behavior and report these to your doctor.

I don't know if the Hb drop can be accurately predicted but so far it has been fairly normal, which would require transfusion to begin at 5-6 months if it continues at this rate.

jzd24:
Christine,
     Hang in there, girl. We are all hoping for the best for Lauryn. I am glad to hear that she has good color and appears to be doing well at least for now. I agree with Andy that a trip to Oakland would be extremely beneficial - for you and for her. You could get some answers to your questions, and Lauryn would be seen by specialists who deal with thalassemia everyday. Call today! I was able to talk to Dr. Viichinsky (international specialist) on the phone when I called from my hospital bed years ago. I was totally frustrated about not getting any help after years of trying and just called. What a shock to be able to talk to a thal doctor.  That was several years ago, but you could call his excellent nurse, Dru Foote, and talk to her. They are really nice. You could even e-mail Dru at: dfoote@mail.cho.org
and ask her questions, sometimes it takes awhile for an answer, or just call Children's Hospital at Oakland and make an appointment with the thalasemia team.They know the latest thinking and trends in treatment. I have been to hematologists, medical schools, the Mayo Clinic, etc., but they just didn't see enough thal people to have many valid answers. That's what is good about Oakland - they see many thal people.
     Another thing I did was just e-mail other thal specialist doctors at the thal centers to get their opinion on things. It's hard for them to give answers when they haven't seen the patient, but sometimes they have insights. I got replies from them, or from their nurses.
     Good luck, Christine. If travel money is an issue, maybe the thal organizations could help pay for a trip.  :bighug  Jean   

Kathy11:
Hi Christine.
look at it this way 19 good years is better than nothing,
none of us knows how long we will live,yes you are entilltled to feel sad but remember you are doing the very best for your daughter and you need all your strength and a clear mind to get on.beside ,I believe there will be a cure in few years time and Lauryn stand a good chance of getting that benefit.
So chin up girl :bighug and get ready for your next adventure;
Love kathy
 

Navigation

[0] Message Index

[#] Next page