Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: dip1973 on July 25, 2010, 06:05:53 PM
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Dear All,
I am a new member in this forum.
Actually My son is detected with HbE & beta Thalassemia six month back when he was sick .In general his Hb lies between 8 to 8.5 but last time when he was sick his Hb reached to 7.3 and then 6.5. we are advised to go for electrophoresis test and it was identified as HbE-Beta thalassemia.
His HPLC report is
HbA=8.3%
HbA2=62.7%
HbF=23.2%
My wife is beta minor(HbA2=5.1%), Hb=10.3
My self is HbE trait.(HbA2=23%), Hb=14.99
After that we met haematology doctor here in Delhi(INDIA) and since then my son is advise to take Hydrea (250mg) and folvite(2.5mg).
At present his Hb is 9.1, but bilirubin(SB)=3.3 and platelets=605
Doctor told me it is quite normal. Is it?
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Hi dip1973 and welcome,
The bilirubin level rises as red blood cells are filtered out and destroyed by the spleen. As you have seen, this process accelerates when the child is ill and the Hb drops. The bilirubin is a by product of the break down of the red blood cells and is not much of a concern. I would advise to try the hydroxyurea and folate program, as this can raise the hemoglobin level and may also help slow the breakdown of the red cells. It does require some patience, as the effects of hydroxyurea can take two years or more before the full effect is seen. This program is a good alternative to transfusion, and since the Hb level has dropped as low as 6.5, some action is required. I will also mention that hydroxyurea has a stronger effect when magnesium and L-carntine are also added as supplements. Our moderator, Manal has a son on hydroxyurea and may have some advice on the dosing.
How old is your son?
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Hello Andy,
Thanks for you reply.
My son is 4yrs 6month old.
he is taking Hydrea from last 6 month.
his Hb was 6.5 befor 7 month when he was sick and it reaches to 7.3after 1 week but doctor's advise was to transfuse him as his serrum iron was low and he was suffering from fever due to infection.
so my son is transfused befor 7 month (1st time). and after then he is on hydrea.
at present his hb is 9.1
Since last 7 month we have recorded his hb
and it was.
9.5(5week after transfusion) on 31st Jan
8.3 on 28th Feb
7.8 on 26th March
8.9 on 10th april
8.5 on 20th may
9.1 on 1st july.
his platelets are increasing currently it is 605, is it common?
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Platelet readings are often wrong. It takes an experienced tech to distinguish between platelets and the irregular red blood cells found in thalassemia, so often the level is inflated by mis-reading. I always say test again and preferably at a different lab if possible. This is one of the most commonly found errors in testing regarding thalassemia, so don't be too concerned about this. The level is only slightly above normal. so that is also nothing to worry about, even if accurate.
The Hb levels since starting hydroxurea are encouraging.
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Hello Andy, Hello manal.
I am Giving 250mg Hydrea to my son whose weight is 14 Kg only. Is it correct.
actually one doctor recommend 125mg and another doctor 250mg. I am little bit confused.
I am also giving 2.5mg folic acid.
please advise.
thank you.
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Hello dip1973 and welcome to the site :biggrin
Your son is taking around 17mg per kilo and usually Hydrea is given starting from 10mg per kilo up to 35mg per kilo (in some of the sickle cell patients).
So the dose he is taking is okay in terms of miligrams, but the important thing about hydrea is not the dose as much as at what dose the body will react positivly. Personally my son reacted a little better when his dose was lowered to 15mg/kg rather than 23mg/kilo.
As for safty, studies showed that it is safe taking hydrea starting 10mg/kg until 20mg/kg
So it is important to fine tune the dose until you get the maxiumum benefit and don't forget to check the kidney and liver function in addition to white blood cells count at least every 3 months while your son is on hydrea.
Please feel free to ask any other thing
Take care
manal
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Hello Manal Thank you for your reply.
I started with 125mg hydrea dose for my son before 6 month ,then last three month the dose was 175mg (although doctor advise was 250mg) and his Hb was recorded as above. Now in the month July I started to give him 250mg does and the hb test is not done so far.If you see the above result i feel that 175mg hydrea shows at least reasonable response then is it required to increase his does up to 250mg.
as you have good experience on this medicine can you please advise me.
LFT was done before 3 month, other than high SB(Bilirubine =3.3) every things was fine.
KFT is not done so far.
and after every 30-45 days we check the CBC.
a
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Hi dip1973,
Increasing or decreasing the dose will actually depend on his respone to the dose, it is lke trial and error. So moinitor his CBC after starting the 250mg and we will see how thiings will go. Please do check te kidney functions with the liver functions too
Do you know the percentage of his fetal HB before starting hydrea??
manal
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After reading some of the posts about using hydroxyurea I'm curious if people with a-thalassemia tend to have low uric acid levels. Mine are always low, and when I would question doctors about the significance they would just say I should be glad I don't have high levels.
I have what appears to be HgH disease - I'll know for sure once the gene sequencing is done.
Something else that is interesting to me is that I have one mutation of the MTHFR gene. With one mutation folic acid is not as readily available because not as much is converted to folate. People with two mutations can't convert any folic acid to folate and have to use the converted form of methylfolate as a supplement instead.
Jan
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Hello Manal
thank you for your advise.
I wiil go for CBC test in next 2weeks and will update the results.
before starting hydrea his Hb was in between 8.0 to 8.5
As I earlier mention also that my sons platelets are high about 605 and doctor advise him to take small amount of oral iron medicine.
so far I know that thal should not take oral iron ,is it true?
his RBC count in last CBC was 4.6 and SF was 65.
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Hi dip1973
before starting hydrea his Hb was in between 8.0 to 8.5
I was asking about the fetal HB, not the total HB. You can read about fetal HB in this link
http://www.thalassemiapatientsandfriends.com/index.php?topic=3595.msg36626#msg36626
As for the platlets, i advise you to recheck them because in thal patients, some of the fragmented red blood cells are counted by unskilled lab technicions as platlets because they are similar in shape under microscope.
The decision of taking iron is done after doing a full iron studies and intermedias are not supposed to take iron by any means because they are already absoarbing an above normal percentage of iron from food in the gut due to their low HB.
manal
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Hello Manal thanks for the reply.
My son's HbF was 23% as per HPLC test done 7 month before.
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That high HbF makes him a perfect candidate for hydroxyurea. I would also question why iron has been suggested. What is the iron dose and what form is it?
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Hello Andy,
Thanks for your response.
I have been advise to give my son oral medicine TONOFERON DROPS.
Each 20drops contains equivalent of elemental iron 25mg.
Doctor told me that his serum ferretine is low (SF=67) and platelets are high, so may be iron deficiency.
I am supposed to give him 10 drops for two month, initially I gave him 5 drops for 10-15 days but then I have stopped.
Dip
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Dip
Having a serum ferritin of 67 is not low. My son is in the fifties and his doctor is fine with this. Are the platlets high in all his CBCs??
manal
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Dip,
I would ask for a complete iron panel to be done before taking iron. Ferritin levels are deceiving in many cases and especially in intermedia. Unless iron deficiency is absolutely proved, you should not give iron.
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Hello Manal
My sons Platelets readings are as follows
308 on 31st Jan (5 weeks after 1st transfusion)
548 on 25th Feb
543 on 29th March
360 on 9th April
586 on 20th May
605 on 1st July
Hello Andy,
Thanks for your advice.
Next time I am planning to go for CBC in some different Lab.
As per last CBC his Hb is 9.1 and RBC count is 4.6,so after getting next readinf I will think for complete iron panel.
Dip
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Hi Dip,
:welcome2 , have a nice time .... best of luck ....
Best Regards
Take Care
Umair
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Hi Dip
Though the platlets are above normal, my doctor once told me not to worry unless it passed one million. I still recommend doing the CBC in another lab and you can point out to the technician about having thal so he is more precise in differniating between platlets and fragmented red blood cells.
I am really happy to know about the HB, keep it up :biggrin
Please consider too giving your son natureal vitamin E because it is a blood thinner in addition to its benefits as being an antioxidant
Take care, you are doing an excellent job :wink
manal
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Hello Manal,
Thank you for your advice.
I will let you know about the updated report soon.
dip
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Hello manal H,ello Andy
today I got the new CBC report of my son.
Hb come down from 9.1 to 8.3
RBC come down from 4.6 to 4.17.
MCV=64
MCH=19.9
MCHC=31.1
RDW=32.2
TLC=16
Platelets=396 earlier it was 605 and I was concern about this. This time I inform the Lab that the chidh is habing E-Beta thalassemia, so platelest count should be do keeping this things on mind.
according to this can anyone suggest me that I should go for giving oral iron or not, infact I am going to meet my doctor tomorrow, but erlier he suggested to give my son oral iron but I haven't do this, as thal should not take oral iron .
I dont know I am little bit confused today.
should I give oral iron?
should I increase Hydrea quantity???
(currently I am giving 12.5mg)
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You really should have iron studies done before continuing to supplement with iron. Iron is almost never right for thal intermedias and majors.
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hello dip and sorry for my late reply
I agree with Andy about having full iron studies before deciding anything that has to do with taking oral iron.
I still don't understand why the doctor suggested giving iron in the first place??
I am happy to know the the result of the platlets too, please keep us informed
take care
manal
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Dear all
today I got the latest bloold test report of my son.
Ferritin=63.4
urea=30.6
creatinine=0.31
bilirubin(total)=2.89
bilirubine (indirect)=2.3
GGTP=7.8
SGPT=10.5
SGOT=39.9
CBC
HB=8.0 (before 45 days it was 8.3)
TLC=11.17
RBC=4.06(earlier it was 4.17)
platelets=376
PCV=25.7
I am giving my son 250mg hydrea (hydroxy-carbamide)
Is hydrea and hydroxyurea is same.
our doctor suggest me to give him 330mg hydroxyurea(cytodrox by Cipla)
please suggest
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Yes, hydroxyurea is often referred to as hydrea. The platelets are back down to normal. It seldom is a problem when they are shown to be high. More often than not, it is the expertise of the lab techs that is in question. The stable Hb is a good sign. With his high HbF level, hydroxyurea has good potential to help keep his hemoglobin level from dropping.
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Dear All,
Today I got the new CBC report for my son.
Currently his Hb is 7.9 g/dl before 2 month it was 8.0g/dl.
His Hb trends is as follows after 1st transfusion on 25th Dec 2009.
9.5 g/dl on 31st Jan 2010
8.3 g/dl on 25th Feb 2010
7.8 g/dl on 28th Mar 2010
8.9 g/dl on 09th Apr 2010
8.5 g/dl on 20th May 2010
9.1 g/dl on 1st Jul 2010
8.3 g/dl on 15th Aug 2010
8.0 g/dl on 29th Sep 2010
7.9 g/dl on 26th Non 2010
From the above pattern can we say the haemoglobin is stable or it is continuously reducing/decreasing?
Or he may need another transfusion in near future.
I dont know why it is decreasing, he had some loose motion and cough/cold before 4 week back.
Although I am going to meet my doctor tomorrow.
(He is taking 250 mg Hydrea since Feb 2010.)
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Hi Dip,
Illness often does cause a drop in hemoglobin level, so this may explain the drop. Hb levels do vary a bit and are affected by the season and also by hydration. A well hydrated person might actually show a lower Hb even though there is no problem, so small changes should be expected from test to test. A physical observation of the child has to be included in any analysis of how well the drug is working. If growth is normal, activity level and appetite are good, these factors have to be taken into account as positives when hydroxyurea is involved.
If possible, L-carntine and magnesium should be taken with hydroxyurea to help maximize its affect.
It can't be predicted if he will need a transfusion in the future, but as long as the Hb doesn't drop below 7-8, depending on the observed health of the child, transfusions should not be needed.
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Hello Andy,
Thanks for your reply.
should I consider the natural resource ( food /vgetable etc...) for L-carntine and magnesium or we should give him any form of medicine.
Regarding the physical growth ,my son is 4 yrs 5 months old, his weight is 14.7 kg and height is 105cm.
He is under weight.
He gained 2kg weight and 10cm height in 11 months.He is very active but some time I realised that he become very tiered while plying.
If any body can share there experience abount the growth it will be very muh helpful to me.
Thank you
Dip
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I think that because of the amounts needed, that you will need to give supplements and not just rely on diet. You can use natural derived supplements.
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Hello Dip,
As a child I had similiar Hb levels. I was always the smaller and weaker child at my age in school. I had a small appetite and was very picky about what I ate. My favorite meal was breakfast and I ate lunch, but dinner was usually forced by my parents. Nothing really changed until the ages of 17 and 18yrs old. I grew to be very tall, but still thin. But i was more active in sports which may have help start the growth spurt.
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Dear All,
Today I got the new update of my son's blood report.
Hb=8.2
RBC=3.93
TLC=13.6
platelets=340
Urea=37,(earlier it was 30.6 on 30th sep 2010)
Creatinine=0.19 (earlier it was 0.31 on 30th sep 2010)
Bilirubin, total= 1.98
Bilirunin,Direct= 0.34
Bilirubin indirect=1.64
I am giving Hydrea 250 mg,
can any body give some idea wheather the Hydrea is doing some side effect on kindeney?
because Creatinine falls down below the lower limit !!!!!!! ???
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The drop in creatinine is actually a good sign because hydroxyurea can raise creatinine levels. What units were used to measure the creatinine?
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Hello Andy
the units for urea and creatinine measured in mg/dl.
blood urea value is 37 mg/dl for my son, where as max. limit is 38 as per the repor I have.
Is the high value of urea is also because of HYDREA?
tomorrow i am going to meet his doctor.
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Both creatinine and BUN (blood urea nitrogen) rise when using hydroxyurea. It is essential that patients stay well hydrated to ensure proper kidney function.
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Dear All,
My sons, new CBC report is as follows
Hb=7.9
RBC=4.01
TLC=12.2
platelets=415
Bilirubin, total= 3.2
Bilirunin,Direct= 0.6
Bilirubin indirect=2.6
compared to last test his Hb fall down from 8.2 to 7.9 and also Bilirubin increased from 1.98 to 3.2.
I have increased the hydrea dose.
Is it that affect?
is it possible that increased dose of hydrea may decrease the HB or increase bilirubin?
or any other suppliment/food may destroying more Hb and producibg more bilirubine??
any experience,please share.
Monday I am going to meet his doctor.
Dip.
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Dear All,
Do hydrea is having any relation with eyes iching??
dip
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Dear All,
I need some advice
From last three months my son's Hb are like
7.3 on 26 th Nov
7.7 on 3rd Dec,
and now 7.1 on 10th Dec, he is suffering from cough and cold from last ane and half month, i used to gave him medicine and anitibiotics just three weeks back but still he is having cough and cold and TLC are aroud 1400 at present.
Should I go for trnsfusion?
if anybody having such experience please share.
Thanks and regards,
Dip
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Hi Dip,
The change in Hb isn't much but the prolonged cold symptoms are a concern, but I have seen the same thing with my 21 year old son who has not got rid of a cold after 2 1/2 months and several doctor's visits. I don't know if transfusing might help shake the cold and each transfusion does pose some transfusion risk, so my tendency is to avoid transfusions if not already transfusing, unless the patient is obviously more sickly overall and noticeable less energetic than previously.
I would hope other members with some real life experience could offer some advice here.
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Hello Andy,
Thanks for your reply.
Today I meet his doctor(hematologist), and he is also having same openion not to go for transfusion.We will check his Hb after another couple of week.
regards,
Dip
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Hello Andy,
Today I got new CBC report for my son.
there is no much deifference w.r.t earlier CBC done befor 2 week.
HB 7.2
TLC 13300
Platelets 758 earlier it was 660 (2 weeks back)
so plateles increased .
I dont understand why his Hb is not coming to the base value which is 8 to 8.5
he is alright for last 2weeks. no cough & cold.
Do u have comments.
this platelets counts may be wrong???
Regards,
Dip
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Hi Dip,
Platelet counts vary from test to test and are often incorrect, as the smaller pale red cells of thalassemia are sometimes mistaken for platelets. It is also too soon after the illness to judge whether or not the Hb will go back to the old level, as it does take some time for new red blood cells to be produced.
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Hi Andy,
Thanks for your reply.
I met his hemato last week, he told me to wait for another month and check his HB again as Hb changed from 7.1 to 7.2 so it is quiety stable. regarding platlets he is telling not to worry. Actually we have stoped giving HU for last six month, my sons HB was around 8 to 8.5 before detection of Thalassemia and after giving HU for one and half year there is no segnificant changes. so he wants to make sure whether it is giving any advantage or not.
from last last 2 week im giving my sons one tea, call TULSI tea in indian language. good for cough and cold.
It is Antioxident, will it harmfull??
Regards,
Dip
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Hi Dip,
No, it is not harmful. In fact, thals should consume as many antioxidants as possible as they counter much of the negative effects of the breakdown of red blood cells and also help to counter the effects of iron in the cells.
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Hi Andy,
Thanks for your prompt reply & suggestion.
I will update after next CBC .
Regards
Dip
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Hi All,
Today I got my son's new CBC report, his Hb is consistently low during last couple of months and today it reaches upto 6.6
In general his hb remains at a range of 8-8.5 but I stop Hydrea from last 7 month after continueing it for one and half years just to see whether Hydrea is working or not (as per doctor's advice).
I think I should againg star Hydrea, .Any suggestion from you is appreciated.
regards,
Dip
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I would suggest starting the hydrea again and also adding L-carnitine as a supplement if possible.
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Hi Andy,
I have started Hydrea Again after stoping it for 6-7 month.
How safe is this medicine?It will reduce the count? thogh I have used it for one and half year.
Any experience of major side-effect noticed?
Regards
Dip
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The conclusions of the Iranian study on hydroxyurea were as follows,
Conclusion: In our study HU was effective for decreasing or cessation the need of regular blood transfusion as well as increasing Hb level in β-thalassemia patients. Also all of the patients could tolerate low-dose treatment with HU in this period without any major side effects. So HU could be a safe alternative to blood transfusion in transfusion-dependent β-thalassemia patients after age of 2 or help to increase Hb level in untransfused TI patients.
You can read more in the post at http://www.thalassemiapatientsandfriends.com/index.php?topic=3799.0
The true judge of how much hydroxyurea is helping has to be your own observations on his energy level and overall health. A child who continues to be lethargic and sickly over a period of time of at least 5 months will probably end up needing transfusions. If health is good, growth is within range and the child is able to participate in normal activities, then transfusions can be avoided.
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Hello to everyone,
After a long time I am writing.
My son was doing well after I re started Hydrea his HB was 7.6 and RBC=4.0 on 12th Nov 2012 but when we do CBC on last monday we found his HB is 6.3 and RBC=3.44
During this period he was not sick but he had vomating one day prior to the CBC I belive it was due to digestion problem and he was not taking anything except water.Now he is taking everything as use well.
Does this low Hb is due to nutrition or is it any indication to start transfusion.
He is otherwise very active with HB=6.3
We are planning to go next CBC by next monday.
Please advise/share your experience.
Thanks
Dip
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Hi Dip,
The low Hb could be related to being sick the day before. Transfusion usually begins after two consecutive readings below 7. I think they will wait for the next Hb test. You should inform them that there was sickness the day before. It is typical for intermedias to see a drop in Hb whenever sick, so it's best to check the Hb again later. Is an electrophoresis planned? The best way to tell if hydrea is having an effect is by the electrophoresis test, which will reveal if the HbF level is rising. If it rises at least a few points, it shows the desired effect is taking place. The lower RBC does indicate a reduction in bone marrow activity. which is an intended effect of the drug to cut down on ineffective erythropoiesis that produces bad red blood cells. His activity level is also a good sign.
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Hi Dip, I also live in Delhi. If u don't mind can you pls tell me which doctor you are consulting.
Thank you.
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Hi Andy,
Thanks for your quick reply.We are planning to have another CBC by next week before taking any decison of transusion.
we have never checked the HbF after starting the hydrea, his initial HbF=23%
I have stop Hydrea from Last monday when I find that RBC =3.44,
I have also seen that his Lymphocytes=2.96 Thou/mm3(limit is 6 to 9)
overall TLC=8.2(limit is 5 to 15)
Hello Mompooja,
I am consulting with Dr.V P Choudhary.
can I ask you the same?
Thanks & regards,
Dip
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CBC done on 22nd Jan again.
Hb raise to =7.0
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Dip, this is typical of thal intermedia. I am glad you are under the care of Dr Choudhary. I am sure he will guide you well. The most important consideration is the health and growth of the child. With borderline Hb levels, the physical observation of the child is very important, as this helps to guide whether or not transfusions are called for.
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Hi Sorry for the late reply I am consulting Dr. Mahajan
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Hi Andy,
Thanks!
I have stopped hydrea for last 15days.I belive it is hydrea which reduces the count and HB.I am planing to visit his doctor by this week end. Do u think it is worth to do another CBC before that.
Currently his growth is quite good.Hieght is 50percentile but weight is relatively low, but he looks pale and annemic.short breathing sometimes.
regards,
Dip
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Hi Andy,
Last week we got another CBC & LFT
Hb raise to 7.2 from 7.0.
Billurubine=3.8 total (3.2+.6)
I have started Hydrea aginwith alower dose.
any suggestion for WG therapy?
regards,
Dip
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Hi Andy,
for last three month my son's HB is as follows,
17/03/13 6.9
13/04/13 6.3
18/05/13 6.8
15/06/13 6.8
SF=56
SB=3.8
child is active.
Does he need transfusion as HB is lower than 7 for a quiet long period.
his weight is 19-20 kg
ht=121cm,
He has been prescribed to take erythropoietin injection (2000) once in a week.
what is your comments??
regards
Dip
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Hi Dip,
Is he currently using hydroxyurea? I would suggest trying the EPO before deciding on transfusion. EPO and hydroxyurea together may work better than either one alone.
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Hi Andy,
Currently he is taking Hydrea 17.5 mg and wheatgrass power juice.
Can we go Hydrea +EPO together ?
Regards,
Dip
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Yes, add the EPO to the hydroxyurea and wheatgrass. If his Hb doesn't rise after this, it will be time to commence transfusions.
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Hi,
It is also advisable to take anti oxidents like Natural Vitamin E , L-Carnitine, Magnesium along with Wheat grass while taking Hydrea.
Is it used?
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Yes, especially L-carnitine and magnesium, which have been shown to enhance the value of hydrea.
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Hi,
Child is transfused on 4th July as Hb dropped to 6.4 and RBC 3.0
i am continuimg Hydrea 250mg.
Rgds,
Dip
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Hi Andy,
My Child was transfused (15ml/kg) 5 weeks back when his Hb was 6.4.
Today after 5weeks I got the new cbc report with Hb=8.0.
Is this new Hb have effect of transfusion after 5week or it is his own hb.
I have been advise if Hb falls below 7 he need transfusion. As the child is intermedia (only 3 transfusion in 7 yrs), should I wait for hb to below 7?
your suggestion /feedback is appreciated.
Thanks
Dip
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Hi Dip,
As long as his growth and development is normal, you should continue to wait until Hb goes below 7 before transfusing. If you feel he has low energy and his growth isn't normal, then transfusion should be done. 5 weeks after transfusion, the blood will be predominantly his own.
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Thanks! dear Andy.
Regards,
Dip
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Hi Dear Andy,
My Son is HbE-Beta Thal.
Currently his Hb is 8.0 after 6th week of transfusion. Can a wait for another one or two week for next transfusion?
Regards,
Dip
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Hi Dip,
Does he normally transfuse regularly? If so, 8 is low for pre-transfusion Hb. It's best to keep it above 9 at all times for patients who transfuse regularly.
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Dear Andy,
we put him on regular Tx from January onwards when his Hb dropped to 6.4.
currently he is nearly 8 yrs old.wt=21kg height=125cm.
Last time in march when he was transfused after 6th week, his hb was 9.1
I was expecting same but dont know why it has been reduced to 8 within 6 weeks.
I am planning to transfuse him this week end.
Thanks for your suggestion
regards,
Dip
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Hi Andy,
My Son is transfused last weekend. His Hb was 7.8
I have one quest
My son was quite good with a hb range of 7-8 till 7.5 year.
Why we should be worried that pre transfusion hb should be more than 9.0 in case of regular transfusion option.
Thanks in advance.
Regards,
Dip
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Dip,
The higher Hb allows for normal growth and development. If the child's growth lags behind others the same age or if there are obvious changes to the bones in the head and face, or if the child is sluggish and can't keep up, transfusion should be regular and the Hb kept above 9.5.
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ALso want to add to ANdy's comment that keeping Pre Tx Hgb between 9 and 10 helps to keep spleen healthy and bone marrow from overworking. This ensures bones are healthy too. With exjade, Iron overload should not be a concern if it is tolerated. if you keep the Hgb up with regular transfusion, you will see there is no difference between his energy level and other normal kids. he can do any activity that he wants to.
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Dear Andy & Bostonian_04
Thanks for your reply and Suggestion.
I am only worried if we do regular transfusion for few years and after that if we stop can he maintain normal HB of 7-8,what he was maintaining before regular transfusion??
Thanks & regards,
Dipankar
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Dip,
It all depends on how well a patient does with low Hb. If growth and development lag and bony changes take place, regular transfusion is a must. Transfusing now will not cause any permanent changes. Once a patient stops transfusing, the bone marrow will again become more active and after a few months, the Hb will be as it was before transfusion.