One month after starting hydrea...

Thanks Mohamed

manal

Manal

I am really very happy for Ahmad. I wish His HB to go above 8.

With Lots of Love for Ahmad

Dimple

Thank you so much Dimple for your wishes

manal

Hi Manal

I am really praying that Ahmad crosses 8 in the next check up. I am sure he will.

Manal - also can you check with your haemetologist if the child has fever.. should we give hydrea in the same dosage or should we stop for a day or 2. Actually this doubt creeped in my mind last year when Prat had fever, and his wbc's had fallen due to infection.. Dr Marwaha said to stop the hydrea for a week. Even during the spleenectomy time.. when he was operated, hydrea was stopped for more than 10 days.

What could be the reason and how much gap we should give if the child is down with fever or infection.

Thanks

Puja

Hello Puja

I am just back from my hematologist and i asked her about this, she told me that hydrea is dose dependant and she would lower the dose during infection (half the dose) and not stop it completly

Unfortuatly, i did the CBC today and it was horribal, the Hb dropped from 7.3 to 6.1 and i usually have the RBCs count around 3.5 Today it was the first to see it 2.8

The only thing that was risen is the MCV, it increased from 60 to 66

My doctor said not to worry cause the whole month he got virl infection, fever for 5 days and also bronchitis. Now he is fine only nasal back charge, but thanks God he is still active and the spleen and the liver are moderate. Liver anf Kidney functions are all normal

My hematologist has changed the dose of hydrea from 20mg/kg to 15mg/kilo.  Also the L-carnitine is changed from 5 days per week to only 4 days per week and will be seeing her in a month.

As for the growth, it is fine. His weight is in the 25th percentile (he gets full with very little quantities of food) and the height is between the 25th and the 50th percentile

manal

Manal,

I am sorry to hear that Ahmad's hg has dropped, I hope that it is temporary and that it will increase by your next appointment.  I am glad to know that he is active and that he looks well. I guess his lower hg can be attributed to his fever this month.  I am also happy to know that his kidney and liver functions are normal.  Is there a reason why his hydrea and L-carnitine have been decreased?

Hi height and weight are good, that is a very good sign - he is growing and thriving. 

please keep us posted, I wish him the best 

Sharmin

Thank you so much Sharmin

Actually the clinic was so crowded yesterday and couldn't have much time talking to my doctor, but i guess ( i will have to confirm by by next appointment) that lower doses of hydrea were seen to be more effective in inducing fetal Hb  as i got to know from listening to Iranian doctors in one of the conferences

But again i will have to confirm

manal

I am sorry to hear this. I hope the hgb is going to be brave and will climb up the mountain again!

 

Best wishes, Dore

Thanks Door for your wishes I like the analogy you made very much i hope too that we can reach the summit of the mountain

manal

I hope you get good results with the new dose.  Ahmad's hg will go up very quickly Manal, I just know it. 

Sharmin

Manal,

We have noticed that lil A's hg is always higher (significantly higher) if we check it first thing in the morning vs the afternoon.  Do you always check Ahmad's hg at a specific time of day?

Thanks Sharmin

We usually check it around 5 pm more or less cause ahmad is so much attached to a certain person who withdraws the blood and usually this person works at the night shift and does not work in the morning.

manal

Hi Manal

Actually lowering the dose of hydrea makes more sense than skipping it. Personally what i do is that I skip a day when Prat is having high fever that day. I dont know why but  I  just felt that it should be done this way. Doctors did not have any explaination for it or a confirmed(right or wrong) answer, wether we should skip or not. My logic is that hydrea besides kick starting the foetal hb  -  makes the wbc's go down as well... so if the child has fever the wbc's will anyways be low, therefore I feel comfortable by not giving hydrea that particular day.  Also for stopping a day or 2 should be ok, as the dosage is taken into account is on a weekly basis.

Dont worry about Ahmad's hb, it is due to viral. i know it is frustrating, slowly we see it going up and then one infection and it comes down drastically. It does feel like climbong a mountain.

 Another perspective to viral infection's is that for every human being -  twice a year such a viral infection is beneficial as it keeps the body's immune sytem working. Also fever is a way to show the body's immunity is working. Anythign more than twice a year is not so good.

1. Another question which comes to my mind is - should we give vitamin c when the children our down with such kind of infection.  May be not  the normal dose of vitamin c but may be 100mg or something for thal kids. ANy comments on this. Will it help? i know iron absorbtion is an issue.. but then what do we use to ward  off  such infections.??

2. Also should we increase the dose of vitamins for thal kids as compared to their ususal intake... will that help.

Wishing Lots of heatlh , happiness, abundance and joy to all my dear thal pal here.

Hi Puja - I have missed you 

I don't know the answer to most of your questions - but I do think that small doses of vitamin C between meals is a good idea - ideally from citrus. 

Sharmin

Puja,

If the iron load isn't high, it is safe to take 100 mg daily vitamin C. It would be best taken between meals to avoid added iron absorption. Citrus juices are also good and will also help battle the infection. There are two problems with vitamin C. One is that it helps absorb more iron from food. The other problem is when there is a high iron load, vitamin C can release too much iron from the tissue and organs into the blood where it can gather in the heart, reducing heart function. This is normally only a concern in transfusing patients. You should also consider using echinacea during colds and infections. During infection it is normal to see a rise in serum ferritin level as the body sequesters iron in the serum ferritin in order to lower the availability of iron to the invading virus or bacteria, both of which thrive in a high iron environment. Because of this, it may be beneficial to take IP6 during infections to take advantage of the opportunity to reduce the iron in the blood.