Question for Andy...

Salaam Umair,

They are both very well, Alhumdollilah. About these pains they have only once in a while, though it is quite severe when it does happen, I need to ask their Doc, when we next meet, to have it investigated and InshaAllah take it from there.
Praying that you are keeping well yourself brother Umair....may Allah keep you healthy, happy and content.. 

Emby Sis,
Ameen ... always praying the same for them ... praying that they r not having anything serious ...

Best Regards
Take Care
Umair

Hello Andy,

In need of your opinion...
Our oldest needs to to use the loo more often than he is used to..[pass water]. He is used to going twice or 3 times a day.  Two months ago he was told that he had Water Infection and was prescribed medication which he took over a period of 3 days.  He had another urine test a week or two after because he is still going between 6-8 times a day.  The test came back as normal.
What do you suppose could be causing this?  He does not drink so much throuout the day.  It is annoying him as the urge to go is sometimes very sudden and when he does go it is a normal amount.  His blood test are within the normal range.  He has an appointment with the GP next week.....I told him that I'll ask Andy about this.  They all know you by your photo...I have asked him to post any concerns on this forum himself....hoping he will...soon.

Emby
   

Hi Emby,

The first thing I have to say is a normal urination schedule of only 2-3 times daily is not adequate. This means he is not drinking enough fluids on a regular basis, and this is something that needs to be corrected. 6-8 times per day is considered normal. I think with thals, fluid intake is critical, as there are many toxins in the body from the regular breakdown of red blood cells and the oxidative stresses that accompany thalassemia. In addition, when you are regularly on medication, especially chelators, plenty of fluids should be taken daily. Exjade does increase both thirst and urination, so this may be a factor.

As far as his current situation, is he experiencing any pain or burning with urination or any abnormal discoloration of the urine? Any pain in the kidney area? If there is no sign of infection in testing, and the doctor may choose to test again, and there is no reasonable explanation for the frequent urination, his sugar level will probably be investigated. However, if this was a problem, he would also be experiencing excessive thirst.

Please review the fluid intake of both boys. It is very important for anyone to get adequate hydration, but with the use of chelators, it becomes even more important.

Thank you Andy for your reply.
He does not have any of the symptons which you ask about.  As for his fluid intake it is about 5-6 mugs full daily....dunno if that is enough....you are probably right...maybe now his body is telling him 'i'm gonna go 6/8 times..and thats that!'. Just reminding you that they are both on ferriprox alone at the moment and he is only taking 3 tabs 3xdaily 5 days per week [ferritin 100].
Thanks for your advice...will encourage them to drink more.   

Emby,

Since deferiprone is excreted by the kidneys, fluid intake is even more important. In fact, fluid intake is essential to ensure that the drug is working to its potential, so keep the fluid intake up, and as long as there is no sign of infection, don't worry about more frequent urination, with the only exceptions being if there is the feeling that there is a need to urinate and little comes out.

Dear Emby,

Is there any weight loss?? Please make sure to test his blood glucose level (fasten and after eating)

manal

Thank you Andy.....I probably need to do the same as I'm not in the habit of drinking throughout the day.

Manal...Alhumdolillah, his blood glucose is within normal ranges and he hasn't lost any weight [actually he has gained a bit and doesn't resemble a beanpole anymore so we are glad about that  ]

Thanks Emby for your reply, since there is no infection and the glucose level is normal, i guess it is something minor or maybe the cold weather sometimes lead to this.

Wishing you all the best

manal

Thank you Manal....lots of love to your children too.. 

hey andy this is pleasance,
i had forgotten my passwrd and so strted anew account today as manit nyways hows u??
well jst was goin thru thj=ese post so thought of letting u know tht we stay in mumbai and jst aweek back i did the t2 scan for my daughter anit who is 6yrs old and yes 1st she did cry but then was fine..............n yes she did have problems in holding her breath for fewer sec as she was alil nervous but then the technician suggested tht i should stop her breath as in when req according to the instructions by closing her mouth and nose and then evn i was skeptical about the same but ma daughter suggested tht i should do so and she wld co-operate and her reports had come today hwerein it stated...HEART--------33.38-----NONE
LIVER---------1.27--------SEVERE
SEVERE HEPATIC AND ABSENT MYOCARDIAL IRON OVERLOADING IS SEEN.
 so i went to dr mb agarwal and he suggested me starting asunra for her tht is 800mg per day
as her iron levels have exceeded to 5200................
pls lemme knowm what is ip6
and yes we have also done her dxa i:e bone density test........so wld be strting her calcium too   any ways u pls share ur opinion on this pls..........need help

Hi Pleasance,

You really do need to start chelation immediately. Right now the heart is safe but this will change without chelation. Please do start Asunra immediately. To minimize reactions to the drug, start out with a low dose, about 1/3 of the required dose, and stay at this dose for 1-2 weeks and then raise the dose. This helps the body get used to the drug without getting the bad rash that occurs when the full dose is taken when starting. Dr Agarwal is an excellent doctor so please follow his guidance.

IP6 is a naturally occurring nutrient that is related to the B family of vitamins. It is also known as phytic acid. It is derived from the bran of grains and is a natural iron chelator, but not strong enough to rely on by itself, and also a powerful antioxidant. Antioxidants are extremely important for thals to help prevent the damage that oxidation does to cells. Tea is another very good antioxidant.

Dear Andy, how are you? Hope you are keeping well.

I have a question regarding copper. I was told today by my childrens Dr. that they both have some diffiiciency in copper, with the normal levels being 12 our youger ones at 8 and the older one at 10. We were told that the hospital does not give copper supplements.. ...that they could eat copper rich foods or buy supplements from Holland and Barrets  !
So... we will buy it from Holland and Barrets but the Dr. could not tell us what dose to take.
We were told Ferroprox has an effect on copper in the body.
Please can you tell me about copper difficiency (Dr. did tell me but i forget a little except that it could make them tired) and how much do you think they should take?
Thanks soooo much.   

Hi Emby,

They can safely take 500-1000 mcg copper daily, which is .5 to 1 mg daily. A good calcium and mineral supplement that is sold in the UK is Osteocare chewable. You can see this at http://www.vitabiotics.com/Osteocare/chewable_formula.aspx  I believe taking a good mineral supplement is a good idea for all thals.

Thanks Andy,

When LB (little brother) was taking Osteocare tablets, vit d, calcium, magnesium, he needed to urinate alot so he has stopped them for a while. As for the copper defficiency, how could it affect them if it got lower?
What time is it there..did you just wake up...thanks for getting back to me quick .
By the way BB (big brother) passed his driving test today...