Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: Katias Mummy on August 10, 2009, 01:24:06 PM
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Took Katia for her regular blood test and this time it was at 66. 2 weeks before that it was at 67 but her average is about 75. She hasn't been transfused yet but am scared she may have to. What do you think the chances are and is there anything that can increase her HB. She is one this month so not sure if babies can take anything but she is already on folic acid ???
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Hi,
At age one she can take many supplements. Folic acid is safe, along with B vitamins, vitamin E (100 IU daily natural E), and if you can find a liquid baby multi-vitamin without iron, that would also be helpful. She is definitely old enough to use the wheatgrass supershots from Dr Wheatgrass. Half a cap full each day.
http://drwheatgrass.com/home.htm I would recommend you immediately start on these, as his will give you some idea of the potential for raising the Hb in your daughter. She is on the border now and will require transfusions if her Hb drops anymore, so if you want to explore raising her Hb level naturally, you must start now. The wheatgrass shots are completely safe and sweet to the taste, and are from an Australian company. It's worth trying and even if you do have to opt for transfusions, these are still of value.
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So when do they usually start transfusung children because it seems like a hB of 66 is quite low compared to some of the other posts that I have been reading?
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If thalassemia intermedia is suspected, doctors will often wait until the hemoglobin drops in the 6-8 range before beginning transfusions. In major, the current thinking is to begin transfusions as soon as the Hb drops into the 9-10 range. Because Katia's Hb is now in that low range, it is likely that she will soon have to transfuse. I do believe attempts to raise her Hb should take place immediately. Also, the possibility of using the drug hydroxyurea, to raise her Hb should be discussed with her doctor. If it is expected that her Hb will continue to drop to lower levels, transfusions should begin now.
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Hi everyone,
So sorry I have been away so long. Sometimes i feel overwhelmed reading all the the information I am working on changing that. Most of the time I'm ok with it but other times I'm not. An update on Olivia...we went to Oakland last week saw Dr. Singer and loved her.Liv had many test done don't have results for all but I can tell you SQUID number was a 4 the Dr said range is from 3-7 and she was suprised Liv wasn't higher her Bone scan was normal Labs came back ok Low on Vit D and Calcium still waiting for ekg and echo.
Dr. Singer feels that Liv is not on a good tx schedule she wants her hgb to be 9 or better at each visit so for now we are going to get tx every 3 weeks. I think she would be able to go 4weeks but sometimes she will get sick during that month and maybe that brings her counts down. Overall she is doing great! She is so funny!..Oh and we are going to increase her exjade from 375mg 7 days a week to 375 3 days and 500 4 days. Dr. Singer wants to see her back in 6 months is Ferritin ins't down. It was a very hopeful visit. I feel like we will be able to do this! I'm just going to keep her as healthy as I can. She is going to be fine!
xoxo kathleen
ps.. Kaitia's Mom...I undertand what you are going through and I believe you all will be fine :hugfriend
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Hi Kathleen,
Its good to hear Olivia is doing so well,i don't know if she is taking carao or not but just to let you know when my daughter started carao we were able to extend her transfusion intervals to 4 weeks from 3 weeks.
Kisses for Olivia :)
Zaini.
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Hi Kathleen,
We also saw Dr. Singer last week - isn't she great? I am glad that Olivia is doing so well. We saw Dr. Singer on Thursday, August 6th. I wish we had run into you at the time:)
Sharmin
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Oh we were there on the same day! I am so mad :mad at myself I wish I would have posted when I was going so we could meet! We may have to go back in 6 months. No olivia is not on caro she will not take it she throws up :(. Missing you at the appointment gives me more of a reason to keep on this site.
Kathleen
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Kathleen
I am so happy that OLivia is dong well, you are a wonderful mum
manal
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Thanks Andy for your advice and Kathleen for your kind words, I am feeling quite emotional as I don't know what exactly to expect which is kinda scary. Katia is getting abit lathargic this week so spoke to doctor and we will see if she picks up this week. I have order the Wheatgrass supershots so should be starting that next week. Hope it helps. What happens when the babies get a transfusion, no one has every explained this to me.
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Hi KatiasMummy,
You'll see a great change in your baby after transfusion,she'll be so pink :) and she'll have a good appetite,it may be a bit difficult dealing with needles and stuff,but you'll see in the end its worth it :hugfriend Good luck.
Zaini.
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Katias Mummy,
I hope things go well. My son has been transfused since 3 months of age and I find he is very active and normal with transfusions.
Kathleen,
We also have another appt in 6 months (probably in February). Hopefully we will meet then! I so wish we could have met while we were there. Maybe we walked past each other. We met Dr. Singer at 2pm. The SQUID test was at 12pm.
Sharmin
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I too have to be there in Feb. Im going to call tomorrow for an appointment I will make it for the same day!
Kaitia's Mom,
Olivia is 5 and she just started to receive regular transfusions last year. We tried Hydroxyurea and that raised her hemoglobin up 1 gram for about 2 yrs. Then it just seemed to stop working and I didn't want to raise the dose because I feared the side effects. Since Liv has been transfused she has grown she is happier and I am more at ease with her daily life. She takes her exjade everyday and we have the necessary tests, labs and scans done to ensure her health is good. I really do know how you feel Livi was a low as a 6 and she has green, cranky not growing , having bone changes.....Once your little girl gets blood both of you will feel so much better....I remember the first time Liv got blood she asked me if she was wearing red lipstick! She looked so healthy Best of luck to you! You are in my prayers.... :hugfriend kathleen
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Katias Mummy ,
i hope n wish that everything is fine with you n ur child now .. wishing u all the best of everything :)
lots of Best Regards
Umair
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We ended up at the hospital once again last night/this morning as Katia had a very high fever, he HB has now dropped to 6.0 I can't beleive how fast it is dropping. Is this normal?? We have to go and see the Haematologist on Monday now.
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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.
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Hi Andy
She has a viral rash. They also said her heart is a little enlarged. Is this normal for thals?
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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.
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Feeling really frightened about the transfusions. :( as I don't know what to expect. Do you think it's worth concidering a BMT
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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
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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.
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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??
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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
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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.
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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.
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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.
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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.
:agree
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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??
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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.
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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??
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Hydroxyurea is a fetal hb inducer,basicaly its a chemo drug which happen to increase fetal hb in patients,but every one has a different experience with it,with some patients it works with some it does not,and while taking hydrea u need to monitor blood counts regularly.
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Thanks, I'll speak to the doctor about it next time I see her. Just wondering what the Hb was for other babies out there the first time they got transfused???
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My daughter was diagnosed at three years,and when she was first transfused her hb was around 7.
Zaini.
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Update on little cutey Katia, we had another appointment after about 5 months now and her hB is now at 75, so it has gone up (thankgod). I am guessing (or hoping) that the wheatgrass supershots that I have been giving her have really helped. She is a happy, active toddler and growing really well.