Dear Christine,
I wish you could talk to my mother; she found out that I had Hemoglobin H Disease when I was not even 2 years old and I'm sure she went through a lot of the same worries and fears that you're having right now and would be able to at least share some thoughts with you.
:hug
But since my mother can't be here right now, I'll share my memories of growing up as a child with an intermediate form of alpha thalassemia. After reading Jean's story and comparing it to my own memories, I realize that the symptoms of the intermediate forms of both types of thalassemia are quite similar.
My Hg count has always been somewhere in the 7 range (I will make an important note and say that my Hg levels, while low, are persistent and constant at this level and for the most part, doesn't fluctuate much unless provoked by illness or something else) and I never did transfusion therapy or was recommended to do transfusion therapy. This was back in the early 80s, so there wasn't too much research done on thalassemia yet, especially in my neck of the woods, I was told, but my mother was told at the time that my own body would adjust to my lower Hg levels.
And it's true. My body did learn to adjust to my lower Hg levels as far as I'm concerned.
As for my symptoms or evidence of my anemia, my most noticeable symptoms came in the forms of fatigue, leg pains/growing pains in my legs from %$#@ for several years, enlarged spleen, higher iron counts, and a definite penchant for catching colds.
I caught colds easier than most kids and took longer to get rid of them. Despite having caught pneumonia and bronchitis on multiple occasions, I never had a transfusion even though my Hg count did drop. I was hospitalized on several occasions because of the severity of the colds, but more often than not, my own mother who is a former nurse, took care of me at home and was very very mindful of getting me well as soon as possible.
My mother told me that the doctor advised her to:
- Watch out for fevers - NEVER let a fever get too high and go unchecked
- Don't let an illness prolong itself - Especially if there is fever involved, don't let an illness go unchecked
- Monitor the spleen size - Though that's more of a doctor's job ;)
- Monitor growth - Again, more of a doctor's thing
- Watch for iron absorption in the stools if there's iron supplements being given (iron deficiency -can- happen with thalassemic patients!) - Stools that are dark indicate that iron is being absorbed
- Make sure I have a healthy diet that is lower in iron and rich in antioxidants
- Make sure I don't overwork myself/push myself too hard in physical activities
- Rest when I need to
I know for HgH Disease patients, the symptoms don't necessarily show themselves until later and that the Hg levels sort of plateau out and settle into a number range and stay there. In my case, my Hg levels settled on the 7 range and once it settled, it seemed that my own body resettled itself out according to the Hg levels.
I'm not sure if Lauryn's thalassemia condition does or will do the same, but if it is the sort to 'settle' out at a number, that's the better time (so I have been told by my former pediatrician) to measure how 'anemic' she is because then you have a 'base' number to compare with.
As far as I know, I was at an 8ish when I was first diagnosed and I've been in the high 7s since, and now at 24, I'm a grown adult - 5'4", healthy looking with no noticeable bone issues except in my pinky finger on my left hand.
But I have an intermediate form of alpha thalassemia and not beta thalassemia, so I don't know if the symptoms for someone with beta thal in my Hg range are different or the same/similar as mine.
I've lived with my 7 Hg all my life and only did a trial transfusion run 2 years ago and during my last checkup, my hematologist was very pleased that I had turned out the way I did and really, I have to give all the credit to my mother.
She was the one who loved me and nursed me in sickness and in health for all my childhood life and during my more trying years in my adult life.
She never let my illnesses, though frequent, go unchecked for long and was always at my bedside when I had bad fevers. She gave me very nutritious meals from babyhood to adulthood and encouraged me to listen to my body and to its needs. She also treated me like I was any other normal kid otherwise and I was, as long as I didn't have to run to keep up or stay up late at nights to write papers.
Christine, I know you're worried, but cheer up! It's scary to have to deal with something so unpredictable as thalassemia, but there are others here who have been through it and there are other parents who have raised children with thalassemia.
I've been through a bit of a ride myself in terms of my thalassemia, but my mother's love and care pulled through! Mother's intuition frequently knows best (in my mom's case at least) so if you follow your heart and listen to what it says, I think you'll be able to make the right decisions to give your daughter the healthiest outlook possible.
