Transplant

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Offline olivia mary

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Transplant
« on: October 08, 2010, 01:53:05 PM »
Hi Everyone  I know it has been a while.. I hope everyone is doing well  :hugfriend

Olivia had her appointment yesterday and we saw a different MD. We still go to Phoenix Childrens Hosp. it's just a different clinic. So the MD we saw was asking me if I had my other children checked to see if they are a match for Olivia and maybe I should research a transplant and that I should talk to Oakland and find out what they think. She told me the longer I wait and the more transfusions that Liv gets it will become harder.
I really never considered this to be an option because I felt that Liv was doing great. SHe has quality of life other than Thal, she is just like my other kids and all kids her age.
Also, Liv gets her ferritin checked at every visit. Four months ago her ferritin was 480 and she was able to take a break from the Exjade for a month and the back on every other day. So last visit it was 1200. This visit it was back down to 678. So my question is, should ferritin be checked every month if a child/adult is getting transfused and on Exjade or Desferal or is every 4 months  ok? Because a Dr. told Christine that Lauryn should have her's checked every 4 months.
Olivia is a Thal intermedia, but she is receiving transfusions every 3- 3 1/2 weeks at each appointment her Hemoglobin is in the 8's. Her Dr and I decided to transfuse at this rate because Liv is now in school ad we wanted to keep her levels up. She has gained weight ( she eats and snacks all day long ) and she has grew too. Could this be why she is needing blood this often? Also is it unusual that she is needing it so often? She is a Intermedia. Thanks Kathleen

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Offline Andy Battaglia

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Re: Transplant
« Reply #1 on: October 16, 2010, 02:30:34 AM »
Hi Kathleen,

I think what you are seeing with the advice about a BMT is a change in thinking that has occurred among doctors due to the extremely high success rates of BMT for thals in the US over the past decade. With success rates close to or at 100% at some hospitals, doctors feel much more confident in giving this recommendation for a BMT than in the past. A transfusing thal, whether intermedia or major, would be a potential candidate for a BMT. I believe that one still must consider all possibilities and also talk to parents whose children have gone through a BMT and learn what to expect during and afterward. Talk to Oakland but also contact Dr Krishnamurti at Children's Hospital of Pittsburgh. It's a decision where being informed as best as possible is the best course.

When the ferritin level is under control and maintaining at low levels, monthly testing isn't necessary. However, anytime there is a sudden upward spike in ferritin, you may want to test one month later to see if it was really iron related. Most infections, even mild, will cause a spike in ferritin that is not related to iron levels, so a sudden rise should not be cause for much concern, unless verified later on.

Transfusing intermedias usually are in 3-6 week transfusion schedules. The fact that she is growing well and has a good appetite gives reassurance that her transfusion regimen is working well. Again, thinking has changed quite a bit and patients are kept at higher Hb levels because choice in chelators is making it easier to keep iron under control, making transfusions a better choice than having sluggish, under-developed patients. With the nutrient depletion that occurs in thalassemia, it's important to develop good eating habits in children, so they recognize the need for a nutritious diet. This really does make a big difference for thals, so try to steer as much of her snacking towards nutritious foods as possible. As a parent of one of the most stubborn boys who ever walked this earth, I can attest to how difficult it can be to get a child to eat good food, but with thalassemia, the extra effort does have real value to the health. Fresh fruit in season is really good, especially fruits like berries, cherries and watermelon. They are all loaded with antioxidants and vitamins. Citrus is best used as a between meals snack and not eaten with meals, as the vitamin C can add to the iron absorbed from food. Citrus is actually a good food for thals when used in moderation between meals. Thals often develop vitamin C deficiencies and this can help to avoid that. Is she taking folic acid and vitamin E?
Andy

All we are saying is give thals a chance.

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Offline olivia mary

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Re: Transplant
« Reply #2 on: October 16, 2010, 06:18:46 PM »
Hi Andy,
Thanks for response.
Olivia's eating habits are so much better I think it is because she is in school now and her age she is willing to try new things and she is eating all day! She is taking a multi vitamin and folic acid. I will get in touch with Dr. Krishnamurti to find out more about a BMT. At a Thal meeting held here in Phoenix a few months back Laurice Levine was the guest speaker she was so informative and positive it was great! Also I met a woman who was of Mexican decent and she was dx as intermedia but wasn't tx until she was in her early 20's. She also has 2 beautiful children and she is doing great. Aslo, I have been feeling very run down and tired, I guess I felt like this in the past but I just delt with it but I had a physical In July and my dr. did some more test and My Hemoglobin was a 10 in July and a 10.2 last week. I feel like it's getting harder with age. Clould it be? I am going back this week to discuss B-12 shots. So we will see.
Thanks Again,
Kathleen

 

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