Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: Manal on January 27, 2010, 01:45:29 AM
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Dear friends,
Find attached to the post a written summary for my son's results for the past year. He started the hydrea on February 10th, 2009.
I also did a CBC yesterday and was soooo disappointed of the results (HB 6.7) because physically he looks better than his hb shows, actually I was expecting more than 7.5 cause his face looks good to me :( :(
By the end of this week i will be doing the echo and the ferriscan
As for today, i did his annual abdominal and pelvic ultrasound and the significant points were:
1- Several gravels in gall bladder (this is leading to a little bit enlarged colon) :wah :wah
2- Total spleen length is 13.5cm (normal for his age is 9.5 cm), I wonder how big it will be without hydroxyurea
3- Liver is fine, no enlargement
4- No extra medullary hematoposeis detected
5- Other organs are completly normal
Andy,
1-If you have a chance to see the attachement, could you tell if hydrea is working for my son or not??
Just for one month, the HB was 7.8 and actually the doctor told me to consider it 8 and for the rest of the year it was not that high. I know that he got sick several times, but also i can not see a satisfactory increase, what do you think???????????????????????????
2- Also this hematocrit thing is really getting me crazy because what i know is that the bigger it is, the higher the HB.
You will see that yesterday's CBC showed an increase in hematocrit (24.7%) this is the highest he had ever reached since he was diagnosed and still you can find his HB very low, do you have any explaination for this???????????????
3- Does the change in the dosage of hydrea has any significance???????????
Waiting for your feedack :(
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Manal,
Have the HbF levels also been recorded? These would give you a better idea if the hydroxyurea is increasing the Hb, as it would ne noticed in rising HbF levels. I do think that there may be some other benefits from the hydroxyurea. You mentioned spleen size and I noted that the other organs were not enlarged and that there was no indication of extramedullary hematoposeis. The hydroxyurea may be having some effect in this regard.
Hematocrit can be affected by factors like hydration level, RBC count and blood plasma volume, so it can be inaccurate. Hemoglobin measurements are considered to be more accurate. I will mention that every source points out that each patient is an individual and a hemoglobin insufficient for one person may be adequate for another. Your objective observations of your son's physical health and development are just as significant as the blood tests.
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Thank you Andy for your quick reply
In the year 2007, my son was on hydrea for 6 months. Before starting hydrea, his fetal HB was 11% (by HPLC) and after those six months it became around 30% (By HPLC), so it did increase, but didn't reflect that much on the total HB (his HB was around 7.5)
Unfortunatly, this time i didn't do the HPLC but i think i can do one and compare it to his normal levels which was 11% on 2007. But again what is the benefit of having an increase in fetal HB if it didn't reflect on the total HB ??? ??? ??? ???
I agree with you that hydrea has other benefits that we can not neglect (though i am getting worried about the spleen size in the last couple of months), but i too can not ignore that it is mainly taken to increase HB
Have you ever heard of anyone gaining higer levels after using it for more than one year as in my son's case?????
I too agree of the importance of clinical observation and it is very good as the doctors and I observe, maybe this is the only thing that keeps me going on ( i will be posting some recent photos of him too in the gallery), but i really can not ignore the fact of being so worried cause i have nothing to count on (hydrea) and can not predict what will happen :wah
Thank you so much Andy
Manal
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Manal,
The increase in HbF does show that the hydroxyurea is working. The goal is to increase production from the gamma gene, while reducing the ineffective erythropoiesis in the bone marrow. Every study I have seen has shown a continuing increase in HbF into and after the second year. I would definitely recommend patience. The benefit to the blood by reducing the excess alpha chains should not be overlooked. The reduction and prevention of extramedullary hematopoiesis, which is extremely common in non-transfused intermedias is another major benefit.
There is a nice powerpoint about the use of hydroxyurea in thalassemia at
http://www.thalassaemia.org.cy/pdf/syria/day%202/Day%202%204.pdf
Note the other positive effects of hydroxyurea, in addition to HbF induction, including the neutralization of the excess alpha chains by the gamma chains. The excess alpha chains are one of the biggest problems in thalassemia and their reduction is a big positive.
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Thank you Andy so much for the non stop information you provide us, makes things very clear.
I went to the hematologist and she said the same thing too :biggrin and the dose of the hydrea now is 500mg daily and L-carnitine will be taken daily too
The very good news is that she is so happy with his growth. He is now very close to 50th percentile
Will be updating you on the echo and the ferriscan as soon as i get the results.
Thank you Andy for everything.
Manal
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Manal,
I am so glad to hear that! I wish Ahmad all the best. Please keep us posted on how he does with the new dose of hydrea and the daily L-carnitine.
Love,
Sharmin
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Thanks Sharmin so much for your wishes :hugfriend Sure i will keep you updated
Take care
Manal
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dear Manal,
-so sorry of the low Hb level :rolleyes but this may be only due to the infections he got. so keep on administrating OHurea and do not give up. you r doing great to ur son.
-about other thalassemics taking OHxy urea: i see some them regularly in Dr Ali Maklouf clinic of Anu El Reesh. so i can give you feedback about their evaluation.
-about spleen: do not worry.it is not a big deal, also it can decrease in size again
-about gall bladder gravels:So Sorry to hear that there are gravels.
overall you are doing great job and put in your mind that Ahmed is quite normal with COMPLETELY NORMAL LIFE. always consider that Ahmed is A NORMAL PERSON WHO IS ONLY TAKING SOME MEDICATIONS
Mohamed
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Thanks Mohamed for the re-assurance :biggrin
Hope everything is going well with you and good luck in your paper
manal
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Today we did the ferriscan to my son, what an expierence.... :whew
Thanks God it all went well and the result will be in 15 days because it takes tiime, since it is analysied in Australia.
I must admit i was too worried but it had to be down
Manal
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Manal,
I am so glad he had the Ferriscan. This is very important because this will tell you if his iron absorption from food is normal or excessive. This is extremely important for planning his treatment program.
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Hi Manal,
First of all, good job Mr. Ahmad :hugfriend :hugfriend So proud of you!
Secondly, yes, this test is very important for intermedias so that you can stay on top of his actual iron levels. I hope that the results tell you that you have nothing to worry about.
All the best to you and Ahmad,
love,
Sharmin
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Andy, Sharmin,
Thank you for your support, i am glad he did it too. I hope the results will be satisfactory :pray :pray :pray
Manal
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Manal,
I am so glad to find out that Ahmed's fetal Hb has increased. I hope his spleen will improve and ferriscan results will be good.
Andy,
I was just wondering how they measure the effect of hydroxy urea when it is tried without stopping transfusions? Would there still be a rise in fetal HB in an HPLC? My sons doctors mentioned that when they start it initially they will try to space out transfusions instead of stopping them. They plan on starting both hydoxy urea and exjade in May when he turns two but it will be one by one. The doc said that exjade is mostly tolerated well but hydroxy urea sometimes has side effects. Any advice on what to watch out for or monitor?
Zahra
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Thank you Zahra for your wishes :hugfriend :hugfriend
When taking hydroxyurea, you should be monitering kidney and liver results each month until you are sure it doesn't affect any of these functions. When you are sure of this, these tests are done every 3 months and then twice a year. The good thing is that if any negative change occurs to these functions they are completly reversed once you stop the hydroxy, so no worry from this point.
To know if hydroxy is working or not (in case of transfusions), you will find that the gap between transfusions has increased and it was reported in some thal major cases (mentioned in the above study that Andy has provided) that sometimes transfusion was eliminated
http://www.thalassaemia.org.cy/pdf/syria/day%202/Day%202%204.pdf
Also you have to do an HPLC before treatment to know the level of Fetal HB before and after treatment. It is supposed that the transfused blood has no fetal Hb so if there is any increase in the level of fetal hb, it is the patient's own increase
Personally, my son felt some stomache ache when he took it for the first time, but what i did is that i started giving it just before going to bed to avoid the feeling of dizziness. The last week and due to some circumstances, i had to give it to him in the mid of the day and found out that he did well and had no trouble which indicates that the body has got used to it
Please feel free to ask whatever you want :wink
Manal
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I went to the Dutch Hematology Congres and was told the name of Hydrea changed in the soon future. Just due the simple fact that an other compagny get the rights of this med.
I have friends who used it. One stopped already and the other will stop it soon because it's just not working for her. I often wonder of it will help me (does someone know????) but I dont know.
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was told the name of Hydrea changed in the soon future. Just due the simple fact that an other compagny get the rights of this med.
I heard that the company will be sold or may be already sold. There is the Italian and the American hydroxurea. I use the Italian one, but I find it with difficulty.....so may be this is the one being sold :dunno
To answer your question, I think using hydrea is a personal expierence that differs from one person to another.
But since you are not a thal you have to check whether the defiency of pk enzyme affect the fetal hb or not, because if it does there is no use of using it.
Please Andy correct me if i am wrong :huh
manal
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In spite of the low HB, there are some good news. :biggrin
Today i was at the endocrinologist, she was happy with Ahmad's growth and she commented that she does not bother with growth as much as the growth rate and being constant and his rate is very good.
It has been two years now since she has been examining my son. There is a certain equation she uses with ( 0 ) as a reference to the normal and as she told me it is accepted for a chronic diseased patient to reach (-2).
Two years ago Ahmad was (-0.8) and today he is (-0.6) and she said that she will see him in 6 months instead of 3 months (Thanks God)
I also must add that i feel that hydrea increases
1- Activity
2- Apetite
3- Growth
Manal
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PK deficiency affects the red cell membrane, causing early death of the RBC's. Because it is not a hemoglobin problem, I don't know if hydroxyurea would have any benefit.
For new developments towards a cure for Pk deficiency see http://www.thalassemiapatientsandfriends.com/index.php?topic=3368.msg34308#msg34308
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Finally, i got the result for the ferriscan as follows:
Average Liver Iron Concentration 1.2 mg/g dry tissue (Normal 0.17 - 1.8 )
21 mmol/Kg dry tissue ( Normal 3 - 33 )
I am definetly happy that the LIC is between the normal range, but i feel it is rather in the high normal or close to, what do you think Andy?????
Anybody has any idea if this MRI shows stones in the gall bladder or not???
How frequent should i do this scan???
The rest of the report said that every thing is okay and all organs are normal except for mild hepatosplenomegaly which is normal in case of untransfused thal
Manal
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Manal,
The LIC is really good and shows that there hasn't been any significant iron absorption yet. However, iron load in non-transfusing intermedias can slowly build up over the years, so some regular monitoring is recommended. You do have a baseline measurement now, which will be helpful over the years.
The Standard of Care Guidelines for Thalassemia have this to say:
18.1.6 Assessment of iron overload.
Ferritin and iron saturation levels should be monitored
annually. If the ferritin levels are persistently greater than
1,000 ng/mL or the iron saturation is greater than 60
percent, obtain a quantitative assessment of liver iron.
Quantitative assessment of liver iron refers to the scan or biopsy. This will only be necessary to do once his ferritin stays above 1000 over several months. For now, continue with a low iron diet and encourage tea drinking with meals. I think hydroxyurea also has an impact, since overall bone marrow activity will be lower, which in turn leads to a lower rate of iron absorption from food.
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Thank you Andy for your reply
My son's ferritin is 64 now, and i think that this proves what doctors said in conference about how tricky ferritin could be in intermedias.
But as you said, that now i have a reference to compare to.
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hi manal
Firstly: I want to congratulate u for good news concerning Ahmed's growth.
Secondry: i would like to know exactly what is the difference between LIC and T2 MRI assessment of liver iron
Thirdly: i dunno if LIC can show gallbladder stones or not but you can do abdominal sonar for stones.
mohamed.
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hi manal
here in europe the brandname of hydroxurea is
"LITALIR"....
they have it in caps and in injektions...
grats for the good work....panos
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Manal,
I am so glad to hear that Ahmad's ferriscan came back in normal ranges :hugfriend i hope the trend will continue,and i hope ferriscan would be available for Pakistani patients soon.
Zaini.
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Mohamed
Thank you my friend for your kind wishes :wink. I am not sure if understand your question properly, but in the scan that i did the liver iron concentration (LIC) is measured by ferriscan (this is a software or technology that analyse the MRI taken to show the LIC.
Please check this post
http://www.thalassemiapatientsandfriends.com/index.php?topic=1677.msg22876
There are three ways to know LIC:
1- Ferriscan (it is a normal MRI and not an invasive procedure)
2- SQUID (available in limited countries)
3- Liver biopsy (invasive procedure, and may not show the exact concentration because the iron is not evenly distributed in the tissues of the liver so the sample taken may not show the real concentration)
As for the heart iron concentration, it is measured by T2*
Please feel free to discuss any other points
Manal
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Panos,
Thanks a lot for yur wishes. Thanks for the information, i really didn't know that hydroxurea is available in this name
Zaini
Thank you dear and i wish the same too. I also hope it will be in Pakistan soon. Actually it is not available here except in one center which is used by Novartis to moniter the clinical trails for exjade, so maybe Novartis in Pakistan could help in this. I think it is just a deal the center do with the ferriscan company to send the MRI film through the computer to be analysed in Australia (as we do here) as the center will be using their normal MRI machines. Hope this will be available soon my friend
Manal
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PK deficiency affects the red cell membrane, causing early death of the RBC's. Because it is not a hemoglobin problem, I don't know if hydroxyurea would have any benefit.
For new developments towards a cure for Pk deficiency see http://www.thalassemiapatientsandfriends.com/index.php?topic=3368.msg34308#msg34308
I won't benefit from it. It was a nice try. My hopes for a kind of "cure" for PK deficiency are minimal. But for thal I am not that negative :)
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Dore,
I wouldn't say you will never see a cure. Please see my recent post at http://www.thalassemiapatientsandfriends.com/index.php?topic=3368.msg34308#msg34308
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Dore,
I hope that you see a cure for PKD very soon.
Sharmin
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Manal,
Just read this posting. I am very happy to see that AHmad is doing wonderful and his iron is also in normal range. All the credit goes to your continued hard work and vigilence. Very happy for you....
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Bostonian, thank you so much for your kind words....but actually all the credits goes to Andy and everyone here in this wonderful place. I just follow your advices backed with all your continous support :hugfriend :hugfriend
manal
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Hello my friends,
A quick updade about my son...to remeind you with his treatment, last January we increased his dose of hydroxurea to 500mg daily (23mg/kilo) and L-carnitine was given daily instead of 5 days per week
His results before and after the change in dose:
HB Before 6.7 After 6.7
RBCs count Before 3.82 After 2.80
Hematocrit Before 24.7% After 19%
MCV Before 64 After 67
Ret count Before 8.5% After 3.2%
Bilirubin Before 2 After 1.8
WBCs count Before 5,100 After 5,300
The doctor lowered the dose to 15mg/kilo for the hydroxyurea and L-carnitine is back to 5 days again and i am really comfortable for this change because we never had the RBCs count that low, it is always in the range of 3.5 to 3.8 so i am afraid that the marrow is very suppressed with no increase in the HB.... Am i right Andy????????
The doctor still didn't lose hope of hydroxy with my son because of the single increased he had last year, but she said we are trying to fine tune the dose in this stage, wish us luck
The doctor was happy with the ferriscan result and the echo and the ECG were normal too.
The spleen is 5 cm large and liver is 3cm large
Before my next visit, i am thinking of doing an HPLC to check the level of fetal Hb too
Manal
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Manal,
Yes, some fine tuning is needed. The RBC and retic count drops are a little more than what's desired. Does he have a good appetite?
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Yes Andy, his appetite is okay and sometimes vey good but he hardly gain weight
manal
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Hi Manal,
I just posted in the about hydroxyurea and nitric oxide in the Documents section. Reading the results of the study made me wonder if you should experiment with different brands of L-carnitine or try it in combination with another supplement. It might be worth thinking about trying to see if you can any change in Hb. One other little piece of information I ran across mentioned that L-carnitine worked better when the subjects ate a lot of carbohydrates.
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Thank you Andy do much
I read the post in the document section and will see if there are other brands here in the market that induces NO in blood like what you mentioned
L-carntine, L-arginine and combinations of Alpha Lipoic Acid and Acetyl L-Carnitine, or L-arginine and lysine
I was too interested in the powder Bobby is taking and wheather it is suitale for children or not???
http://www.bodybuilding.com/store/bsn/xplode.html
manal
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Way down at the bottom of the label, it says
This product is only intended to be consumed by healthy adults 18-50 years of age.
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Yes Andy i saw it but some of the supplements we use like resveratrol for example, have the same note too
used by 18 years and above
I guess it is really difficult to decide :-\ :huh
manal
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Because this supplement has a proprietary blend and we do not know what is in that, we have no way of knowing if it's safe for a child. Being that it's a bodybuilding product, I would say it should be adults only.
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Thanks Andy, it better be safe
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What was said on the conference in Berlin is that all thals should try hydrea. (I think trying it for a year or so). Does someone post already about the important things that were told in Berlin?
Also I have heard people like us should eat something every two hours (to keep the energy up to date) and one glas of water every 2 hours (although that was more said about sc).
I hope it helps a bit.
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A quick updade about my son...to remeind you with his treatment, last January we increased his dose of hydroxurea to 500mg daily (23mg/kilo) and L-carnitine was given daily instead of 5 days per week
His results before and after the change in dose:
HB Before 6.7 After 6.7
RBCs count Before 3.82 After 2.80
Hematocrit Before 24.7% After 19%
MCV Before 64 After 67
Ret count Before 8.5% After 3.2%
Bilirubin Before 2 After 1.8
WBCs count Before 5,100 After 5,300
The doctor lowered the dose to 15mg/kilo for the hydroxyurea and L-carnitine is back to 5 days again and i am really comfortable for this change because we never had the RBCs count that low, it is always in the range of 3.5 to 3.8 so i am afraid that the marrow is very suppressed with no increase in the HB.... Am i right Andy??
The doctor still didn't lose hope of hydroxy with my son because of the single increased he had last year, but she said we are trying to fine tune the dose in this stage, wish us luck
The doctor was happy with the ferriscan result and the echo and the ECG were normal too.
The spleen is 5 cm large and liver is 3cm large
Before my next visit, i am thinking of doing an HPLC to check the level of fetal Hb too
Dear friends
The above quote was to remind you of my last situation.
Yesterday, i had a visit to the doctor after three months. During those 3 months we lowered the hydroxy to 15mg/kilo and L-carnitine was back to 5 days/week.
I am so happy to tell you that Ahmad Hb is 7.7 (increased by 1 gram), i am soooooooo happy (I know this reading is so low to all of you :rotfl, but it is the highest i have ever seen and wish i can see higher and higher)
Anyway, below I am comparing his results according to the dosing
HU 17.5- 20mg/kg HU 23mg/kg HU 15mg/kg
+L-carnitine 5/week +L-carnitine daily +L-carnitine 5/week
(feb2009- feb2010) (one month only) (last three months)
HB 6.7 6.7 7.7
RBCs count 3.82 2.80 3.69
Hematocrit 24.7% 19% 24.1%
MCV 64 67 65.3
Ret count 8.5% 3.2% 8.3%
Bilirubin 2 1.8 2.1
WBCs count 5,100 5,300 7,500
So his readings today is the one in the third column.
Andy, I was wondering........
1-Why the reticulocyte count is not decreasing
2- We have been for one year on a dose between 17.5mg to 20mg/kilo and i saw no change in Hb, do you think that taking the 15mg/kg, is reason for the increase in HB although all other readings are the same
When my son was diagnoised in 2006, the HPLC showed 11.4% of fetal Hb.
Yesterday, i did another HPLC and found that the fetal HB is 27.5% (after using HU)
Hopefully, i will do another one after three months, to check it again, but during this time i will be giving my son all possible natural fetal HB inducers (resveratrol, carao, aloe vera, wheat grass) in addition to HU in order to see if they will help all togather or not
As for kidney and liver functions, they are normal, thanks God
His weight is in the 25th-50th percentile
His height is in the 50th percentile
Love you all
manal
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Manal,
That is wonderful! I am so happy for Ahmad (thank god). I hope his hg remains high and that he continues to thrive:)
Sharmin
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Thank you Sharmin for your wishes. I hope so too :hugfriend
Manal
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Manal,
Th retic count should be higher than normal at this point because there has been a spike in Hb and HbF, and this would be indicated by an increase in new red blood cells being formed. I think dropping the hydroxyurea dose has had a positive effect and perhaps a happy medium has been reached where there is less bone marrow suppression, allowing an increase in HbF production. However, I think it is more than that, as the L-carntine and magnesium (you are giving magnesium, correct?) in combination with hydroxyurea are working as expected. If possible, you may want to try to duplicate the homeopathic treatment that little A has been receiving to see if that can also boost the HbF. It has been shown that all the various Hb inducers have a cumulative effect, so please do add the other inducers.
One lesson here is that patience is required with hydroxyurea. Even though some effect may be measured in months, the real value of hydroxyurea becomes more apparent in the second and third years of use.
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Andy,
Do you think dropping the dose more will have a better effect??
As for the magnesium, i used to give it regularly except for a while till my new shippment of the supplement arrives
Definetly i would love to try the homeopathic treatment, but i think that Sharmin's doctor won't give his ''recipy'' through corresponence and unfortunatly, we don't have this kind of treatment here (though there are some doctors but working without a lisence :( :()
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Hi Manal and Andy,
i will be speaking with the homeopathic doc soon. He will probably give me the ingredients in the meds when I meet with him. Unfortunately I have not been able to see him as my son's radial fracture seems to have slipped after recovering. He will now require further treatment to his arm. We will see the orthopedic surgeon tomorrow to determine what method of treatment he will require. I am praying that the recovery will not take too long so that he can get back to playing the sports he loves.
Sorry for the delay, i will post the ingredients as soon as we get this issue sorted out.
Best,
Sharmin
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Sharmin,
Wish little A a speedy recovery.
Is he still on steriods??? I think they don't help in healing fractions, correct me if i am wrong
Give him a big hug for me :hugfriend
manal
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Thanks Manal,
Little A's surgery went well. He had two pins put in his wrist and is in a cast again. I hope that his recovery goes well this time. I also think that the prednisone may have had an effect on how the fracture healed. I feel that the prednisone is not helping his hemoglobin at all, because he had no improvement with the prednisone - instead he responds to the homeopathic meds. I am tempted to ask the doctor to wean him off of the steroids until his arm heals this time. Poor kid has been through so much. The had to rebreak and straighten his wrist :( He is being a trouper though.
I hope all is going well!
Sharmin
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Sharmin,
I am really sorry to hear about Little A'a arm,give him a big hug for me plz :hugfriend .
Zaini.
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I expect his arm is swollen? My father had an operation to get those pins out plates out. Poor arms. I hope his arm heals soon and that he may wean off prediisone. He handles all well?
:hugfriend
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Dear little A :hugfriend
Wish you a speedy recovery my sweet heart, love you so much :hugfriend
manal
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Thank you so much Zaini, Dore and Manal,
He is doing well so far. His attitude has been better than I expected. He is on summer holidays - I so wish he could be out playing hockey and soccer but the docs have asked him to be extra careful this time. Your wishes mean so much to us :hugfriend
much love,
Sharmin
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Hi Andy
Could there be any defiency in the body that is causing hemolysis????
1-Last March Ahmad's HB was 6.7,(high dose of hydrea)
2- June it was 7.7 (Lowered the dose and at that time we agreed that this is the suitale dose for his body)
3- August it was 7.2 (same low dose)
4- Today it is 6.7 again and he was NOT ill since August, so WHY????????????????????
I was assuming that if he was not ill the hb -if not increased-, it will be at least stable. What could be dropping the HB, is there anything i can test???????????????????????
PS
I noticed that in the two times i increased the dose, the result after one month is usually low but the following month, it is in the peak ( up to 1 gram increase and then starts declining). So the question is could be this big increase due to an accumalative effect of the drug that appeared after a couple of month and started declining because i lowered the dose again????
I don't think that lowering the dose could be the reason ( for having the highest reading in HB)because he was on low dose for a long time and with no significant increase
I really don't know does what i say make sense or thereis no relation????
Anyway i will be at the clinic in a couple of hours :(
manal
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Hi Manal,
Has there also been any change in his retic count or bilirubin levels? These would give some indication if hemolysis is taking place.
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Hi Andy
1- March the retic count was 3.2%, bilirubin 1.8 , hb 6.7 (result after one month of high dose)
2- June the retic count was 8.3, bilirubin 2.1 , hb 7.7
3- August the retic count was 4.3 %, bilirubin 1.9 , hb 7.2
4- Today the retic count was 8.5 %, bilirubin 2.2 , hb 6.7
When the hb was high in june the retic was high and when it was low as of todaythe reticwas high too. howcome :huh :huh
Also for the first time in his life the platlets are lower than the normal, 110,000 (normal 150,000 - 450,000)
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I looked back at the tests you posted at the beginning of this thread and noticed that he also had a drop in Hb after summer of 2009. Is this possibly a seasonal change? Is there any change in him physically with the lower Hb?
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This drop was due to continous infections he had during July and August 2009, so the drop was justified.
But from this last August everything was fine that is why i am frustrated for this decrease.
As for his activity, it is the same. but definetly he is paler
manal
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Just came back from the clinic.
The doctor said that in thal there is no justification for the decrease and there is no pattern.
She asked us to do another CBC after one week after increasing the hydrea dose to 450mg instead of 400 and lowered the dose of L-carnitine, but taken daily instead of 5/week. She also doulbed the folic acid dose. All this for this week until we do the CBC
Last August, the spleen was 3 cm enlarged, but today it is 7 cm enlarged. So she said that this is the reason for the hemolysis and also this is the reason for the decrease in the platlets as the spleen is ''eating'' them.
Please your prayers are extremely needed
Manal
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Manal,
I know the list is based on reactions in alpha thalassemia, but take a look at the list in this post to see if your son may have had exposure to anything that might cause hemolysis. http://www.thalassemiapatientsandfriends.com/index.php?topic=3410.msg34830#msg34830
Meanwhile, I have posted in a new topic asking for any ideas for reducing spleen size. One of our adult members recently told me she may have to have her spleen removed because it is 26 cm. Incredibly, she is used to living with it at around 20 cm. I am really hoping we get some suggestions, so that she can find a way to keep her spleen.
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Manal,
My prayers are always with you and little Ahmad. I hope and pray that his spleen will shrink and that his hemoglobin will increase. I am hopeful that some new method of treatment for thal intermedia will be helpful to you very soon. Have you ever tried nigella?
The homeopathic medication I was giving lil A worked initially but eventually had no effect and we so we had to repeat the ritux - we abandoned the use as I think there may have been a link between the homeopathic medication and his loss of appetite. Otherwise I would have recommended that to you.
I am sending you lots of love and prayers,
:pray :pray
Sharmin
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Manal,
I am sure Ahmed's hb will get back to his normal levels,we are all praying for you and Ahmed,couldn't this be due to hot weather? coz i notice Z goes pale fast in summer then in winter.
Praying for you,keep us updated. :hugfriend
Zaini.
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Dear Manal, I do not have enough knowledge to give you advice. But I will like to give you this :hugfriend
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Andy
Thank you so much for your concern :hugfriend. I will check the post and concerningthe list, to my knowledge, he was not exposed to any of those things
Sharmin
Thank you So much my friend. I have started the nigella today but the oil is only available right now, hope it works :hugfriend
Zaini
I really do hope so my friend :hugfriend. I know what you mean about the weather, but actually his Hb usually increases in the summer rather than the winter. May be in the summer he sleeps more and eat better than when he is in school
Babynorth
Thank you my dear, this means a lot :hugfriend
Manal
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I wish you the best with the nigella Manal. I used to give him nigella with honey and aloe vera juice - it seemed to work at the time.
Please keep us posted,
Sharmin
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Thanks Sharmin, definetly i will :hugfriend
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The nigella oil is also very good Manal. But adding honey is necessary to bind the stools otherwise the stools would be very loose and watery. Wishing you and Ahmad all the very best.
maha
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Manal,
I am sorry if i am getting this wrong but nigella seeds aren't available there?
Zaini.
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Thanks Maha for your wishes :hugfriend
Zaini
Actually we have nigella here, but Ahmad hates the taste, so i used to get him a supplement that has the full seed grinded inside a capsule, he used to swallow it not knowing what is inside, but this brand for unknown reason is not found, so i am getting him some other capsules but they have the oil only, which is better than nothing
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She asked us to do another CBC after one week after increasing the hydrea dose to 450mg instead of 400 and lowered the dose of L-carnitine, but taken daily instead of 5/week. She also doulbed the folic acid dose. All this for this week until we do the CBC
I did the CBC and the hb was 6.8, platlets count back to normal and retic decreased by 1% (it is 7.5% now). The spleen decreased by 2 cm (it is 5cm now). The doctor said we will continue with the same dose
I will be ordering the red root and hope that it will help decrease the spleen
Manal
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Manal,
That is encouraging to see some small improvements after only one week. It may be that there will be a need for some regular fine tuning of the dosages.
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Manal,
Thank you for the update. It seems like things are better. I am so glad to hear that his spleen size has decreased. I hope that things continue to improve. I will continue my prayers.
Sending you my best,
Sharmin
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Thank you Andy and Sharmin so much for your replies. I really hope things will be better :hugfriend
manal
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Manal I hope you son is doing better! :hugfriend You are an amazing mother! and your family is in my prayers. Olivia recieved her transfusion today and during her exam the MD told me her spleen was 3cm. What happens now? Do we just watch it? at what point do they talk about removing it?
Thanks Kathleen :biggrin
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Hi Kathleen
If Olivia is on regular transfusion I guess she should have a normal spleen as she keeping a high level of hb, never the less 3 cm is not something to worry about.
I remember from the conference that I attended that the spleen is removed when
1- it is over sized and it threatening the patient's life by rapture
2-when it is destroying the red blood cells causing continous drop in hb and therefore decreasing the gaps between transfusions and this will be accompanied with slow growth of the child because spleen enlargement Consumes the body's energy and therefore decreases the rate of growth.
Manal