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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: 4th month update on Hydrea  (Read 5881 times)
Manal
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« on: September 06, 2007, 08:34:56 PM »

Hello everyone

This is the fourth month with hydrea and here are the results compared to the previous month. But they are not in the same labs as the previous one was done outside Cairo due to our vacation.

                        August CBC -------------------------------------------- September CBC



HB                        7.2                                                   7.4

MCV                     62.5                                                  68.2
 
RBCs count            3.39                                                  3.41
 
Platlets                 263,000                                             301,000
 
WBCs count           7,200                                                6,200
 
Bilirubin                  1.8                                                     2
 
SGPT                 26 (up to 44)                                        16 (up to 40)
 
SGOT                 41 (up to 34)                                        27

Creatinine            0.7 (0.3- 0.7)                                       0.4 (0.5-1.5) 
 
Urea                   28 (10- 45)                                          36.1 (10 - 50)
 
Uric acid              7.5 (2-5.5)                                            4.9  (3.4-7.2)

Retic count           3.9%                                                  4.1%


Andy, since you always insists on the importance of calcium, zinc and magnesium, i checked them and found the following:

Serum Calcium (total)     10.4   (8.4 - 10.2 )
Serum Magnesium          2.1     (1.6 - 2.3 )
Zinc in Serum                 65.5   ( 72.6 - 127 )

*So as you can see Ahmad is little low in Zinc, so i will be choosing a temprory multivitamin rich in zinc and will find out which food that is rich in zinc

* As you all can see that the kidney function returened to normal again and i was wondering did it correct itself or this is due to different labs, actually the hematologist didn't give me any answer as she was interested that he is okay now and said that even the previous raise in the renal functions last month was not annoying to her.

* I told her about the small and missing bones in Ahmad's wrest and she said that this shouldn't be an indication that he will have growth hormones and she gave me the address of an endocrinologist to evaluate Ahmad and to do the bone age test. I will meet her next week and let you know.

* This week is the annual check up for Ahmad to do the abdominal ultra sound and the heart echo. I did the first one yesterday, but unfortunaltly the doctor wrote in the report that he found a mobile gravel ( stone ) in the gall bladdar about 1 - 2 mm 
When i was annoyed and asked him if this can cause him any pain, he said that this a very small and it can only make some discomfort in digestion and he can get rid of it ( But how?Huh?)

I didn't see the hematologist again after the ultra sound, so i didn't tell her yet.  I know that this gravel is caused by the excess of bilirubin but i thougth this will come later not that early, he is amost five years old.
Is it true that he can get rid of it? If yes, by medicne? Do i have to avoid certain food? Does this mean that he has to remove the gall bladdar in the coming years?Huh?Huh???

The most important question is that why the bilirubin is increasing though his Hb level is increasing??
When his HB was in the 6s, the Bilirubin was 1.3 to 1.5 and now when he is 7.4 , the bilirubin is 2  Huh???

Please your feedback is highly appreciated
Manal


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Zaini
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« Reply #1 on: September 07, 2007, 06:25:48 AM »

Hello Manal,

it's nice to see that Ahmed's Hb is increased,though the gall bladder stone is a frightning issue,it must be small according to the doctor, but for us moms,everything concerning our kids is big,right?so i don't know much about gall bladder stones,are they similar as kidney stones? coz we have a family history in kidney stones,my brother had kidney stones big enough so he had them out through some ultra voilet rays or something (i don't remember the exact name at the moment, how stupid of me  )and my mom also had stones in both her kidneys ,but her stones were broken down with medicines,as they were tiny,when i was pragnant with Hasan,i had pain in my sides and i was told after an ultra sound that i have stones, but after hasan's birth doctor was unable to find them,and the pain went away.

So i hope it's not a serious issue,i am sure medicines would be able to help,i am sure Andy would come with a lot of information about this and the bilirubin issue.

Wishing Ahmed health and joy.

ZAINI.

P.S Keep us informed about your visit to endocrinologist.
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Gabri
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« Reply #2 on: September 07, 2007, 08:22:17 AM »

Hi Manal,

this value looks good. There are some differences compared with the values of last month but it can due to the different Lab.

I think i told you onc, that thals especially thal intermedia  tend to get gall stones because of the elevate bilirubin.   I'm thal major and i have a lot of gall stones, but they don't make any pain. I know a lot of thals without gall bladder.
Laser therapy are used in kidney stones i don't know if there are a similar therapy for gall stones. If so, a urgery could be averted.

Unfortunately there is no way to get under control the  high bilirubin because of the disfunction of blood producing. But it is absolutly not a life-threatening problem.
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Manal
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« Reply #3 on: September 07, 2007, 07:21:16 PM »

Thanks Zaini and Gabri for your replies, i will keep you updated when i visit the doctor

Manal
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Andy Battaglia
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« Reply #4 on: September 07, 2007, 10:51:54 PM »

Manal,

It is good to see that Ahmed's increased Hb has maintained. The bilirubin reading is a bit higher but I would suggest waiting and seeing what it is with the next checkup. Normally, patients using hydroxyurea will show a decrease in bilirubin as bone marrow activity, including the hemolysis that takes place within the bone marrow, will decrease some due to the higher Hb. The gallstone may pre-date the hydroxy treatment and hopefully the hydroxy may lower the bilirubin, leading to less gallstone formation. I think the variation between tests demonstrates that the results of one test may not be significant in the big picture. It is best to wait to see the next test before deciding any important changes have taken place. Just as the renal tests showed improvement, the bilirubin situation may also improve.

Zaini, there are no similarities between gallstones and kidney stones.

From http://digestive.niddk.nih.gov/ddiseases/pubs/gallstones/

Quote
Gallstones are small, pebble-like substances that develop in the gallbladder. The gallbladder is a small, pear-shaped sac located below your liver in the right upper abdomen. Gallstones form when liquid stored in the gallbladder hardens into pieces of stone-like material. The liquid—called bile—helps the body digest fats. Bile is made in the liver, then stored in the gallbladder until the body needs it. The gallbladder contracts and pushes the bile into a tube—called the common bile duct—that carries it to the small intestine, where it helps with digestion.

Bile contains water, cholesterol, fats, bile salts, proteins, and bilirubin—a waste product. Bile salts break up fat, and bilirubin gives bile and stool a yellowish-brown color. If the liquid bile contains too much cholesterol, bile salts, or bilirubin, it can harden into gallstones.

The two types of gallstones are cholesterol stones and pigment stones. Cholesterol stones are usually yellow-green and are made primarily of hardened cholesterol. They account for about 80 percent of gallstones. Pigment stones are small, dark stones made of bilirubin. Gallstones can be as small as a grain of sand or as large as a golf ball. The gallbladder can develop just one large stone, hundreds of tiny stones, or a combination of the two...If you have gallstones without symptoms, you do not require treatment.

There are treatments using drugs and also surgery if the gallstones become a problem, and removing the gallbladder is common in thals. One of my buddies in Maldives was recently very ill and was taken to Sri Lanka where his gallbladder was removed. He is now recovering well, and hopefully chelating. 

What else can you do? Ambareen recently saw a reduction in her bilirubin levels after using "black onion seeds," or Nigella or Kalwanji. A list of names for it can be seen at

http://www.uni-graz.at/~katzer/engl/Nige_sat.html

These are used as a spice and also an herbal medicine and have also been studied and shown to protect the liver. Our previous thread about this is at http://www.thalassemiapatientsandfriends.com/index.php?topic=1147.15

It might be worth trying these to see if they have a positive effect on Ahmed's bilirubin level.
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Andy

All we are saying is give thals a chance.
Manal
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« Reply #5 on: September 09, 2007, 07:03:52 PM »

Thanks Andy, i will try to give it to him though i know how bitter they are. If he didn't i will buy him the Nigella capsules  from the pharmacy.

Manal
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