Baby's HB is getting lower

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

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.

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?

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.

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 

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.

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

Oh we were there on the same day! I am so 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

Kathleen

I am so happy that OLivia is dong well, you are a wonderful mum

manal

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.

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  Good luck.

Zaini.

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

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.... kathleen

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

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.