Some Reports of Priya

Hi everyone,

 I want to share some reports of Priya. We did her CBC on 18 Nov.
Thanks GOD her HB has been raised to 8.8. She takes 500mg of Hydrea, Folic Acid and Multivitamin tablet daily. And she also takes one 5000 UI of RECORMON injection weekly.
I really don’t know what are the side effect of RECORMON and for how long time it can be taken. I will be very grateful, If anybody can guide.
Other thing which I want to comment is that we did her ferritin test and her ferritin is 330 which is above normal. I don’t know whether she needs to start with some iron chelation therapy or not. Or how can I get her ferritin level low. Let me tell you that Priya has never received any transfusion.

Waiting for your advice.

Regards

Dimple

Dimplejee,

Very glad to see that she is doing well with the Hydrea and is maintaining her Hemoglobin levels.

As far as i know Iron Chelation starts when the ferritin levels reach around 1000. Also, you can give Priya tea with meals for reducing the Iron Absorption from the food.

Hey Dimple

330 is not bad. Narendra is right give her tea and cofee. Also my Doc had said kids will receive chelation only after 24 transfusions. So if she has not received it so fat, you shud not worry about it.

Prat is going for his first recormon shot today. Is there any reaction I shud be prepared about. As of now my Doc has also not advised me of any side effects. Also my mother in law who is on dialysis she takes it.

Ill get back to you asap.

Puja

330 is still low ferritin and chelation is not required at this time. Until ferritin rises above 1500, it is safe to not chelate. A low iron diet may be of some benefit. Tea with meals reduces iron absorption. Don't take citrus with meals as it increases iron absorption. With her Hb at this level, she won't need transfusions so her iron won't be rising from taking blood, so keeping the dietary intake down is important.

A study typical of the combination use of hydroxyurea and recombinant erythropoietin (Recormon is a brand of recombinant erythropoietin) can be seen at
http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=12468925&dopt=AbstractPlus

Use of hydroxyurea and recombinant erythropoietin in management of homozygous beta0 thalassemia.
Kohli-Kumar M, Marandi H, Keller MA, Guertin K, Hvizdala E.

Pediatrics, University of South Florida, 17th Davis Boulevard 2nd floor, Tampa, FL 33606-3475, USA. mukumar@hsc.usf.edu

This report describes the sustained response of an Iranian girl with homozygous beta(0) thalassemia (IVS-II-1G-->A) to hydroxyurea (HU) and recombinant erythropoietin (rEPO). Since the start of this regimen 7 years ago, she has been transfusion-independent and her hemoglobin is maintained between 9.5-11.0 gm/dL. She is maintaining consistent growth around the 10th percentile for age and enjoys a good quality of life. She has not had any therapy-related adverse effects. This experience suggests that therapy with HU and rEPO may be useful long-term in some patients with beta thalassemia.

PMID: 12468925 [PubMed - indexed for MEDLINE]

This type of result is seen regularly with this combination. Although Recormon has some side effects (like most drugs) it is considered safe for long term use. Your doctor will guide you through his plans, whether it be short or long term use. The ultimate benefit of raising Hb without transfusion is much preferable to transfusion.

Thanks A lot Mr. Andy. You are just great.
Your reply has given me lots of confidence and courage.
I am really thankful to you.

Thanks Narendra & Puja for your prompt reply.

I give Priya min. 3 cups of tea daily and i do take care that she should not eat any citrus with her meals and i try not giving veggies rich in IRON. But i am not sure about DALS(Moong dal, Urad dal etc.).
 Are they rich in IRON?

Puja : Regarding Recormon, Priya did not had any reaction. BEST OF LUCK.

Regards.

Dimple

Dear Dimple

Dal's are ok , my hema has said if prat wants to eat saag(spinach which is supposed to be very rich in iron0, let him . it is a seperate story tht where kids like to eat vege's. Just chk ur multivitamin doesnt hv any iron in it ?

Prath had his first shot of Recormon yday 5000 iu. He had a very bad stoamch ache last night, i am not sure wether it is due to recormon or a mere co incidence, he gets gastric sometimes. So am not sure at all. Dimple - any exp on it.


Thanks

Puja

Hello Ladies,

I just wanted to say that the "Whole Masoor" dal is very rich in Iron. Amazingly it has almost twice as much Iron than spinach. In fact even Mung and most lentils/pulses have a lot of Iron in them.

I have found about a couple of Dals on the link that Mr. Andy provided that allows to search for mineral content in food but I don't know some of the translation of names of Dals into English for search. Perhaps you might have better luck. Here is the link:

http://www.nal.usda.gov/fnic/foodcomp/search/

Hi Puja & Sajid

Sorry, I couldn’t reply you earlier as Priya was not well. She is having some throat infection and fever.

Thanks for you reply.
Sajid, I go through the site which you have mentioned and only thing which I found related to the Dals is just lentils and its says one cup weight 198 g contains 6.5p mg of Iron. What is your opinion do you think it’s too much.

Puja, Thanks GOD Priya had never experienced any side effect after giving Recormon.

Take Care

Dimple.

Lentils are similar to spinach in iron content. Keep in mind that both contain non-heme iron which is not as readily absorbed as the heme iron contained in meats. Beans and lentils generally are sources of iron but they also contain many other important vitamins and minerals, and when combined with bread or grains, beans are a good source of protein.

You cannot avoid iron in your diet totally but you can make informed choices as to which foods you do eat. Using the USDA tool at http://www.nal.usda.gov/fnic/foodcomp/search/ can be very helpful in determining the total nutrition of a food. If you examine beans and lentils you will see they are very nutritious foods.

We can't avoid Iron totally as we have to maintain balance with outer nutrients as well. We can however adjust the amount and give a little bit of everything and not giving too much Iron rich food as a habit. Besides, there is tea which we can take to help in this regard