Copied from MSN Thal Forum - Please add your own comments below, if you wish.
From: smiley316 (Original Message) Sent: 3/11/2002 9:48 AM
I would like to know if anyone out there has to see an endocrinologist, due to the thalassemia?
From: Shabana Sent: 3/16/2002 5:36 PM
Just wanna say hi to all...and in response to the osteo thing i am having a drip called PAMIDRONATE monthly and it has been great in treating the thinning of bones...i would recommend it to all
Thanx 4 reading...SHABANA =)
From: Nikhil Sent: 3/26/2002 11:45 AM
hi shabana this is nikhil from Harrisburg, PA, USA. In relation to your osteoporosis i just wanted to say that exercising 4 times a week greatly increases your bone density and your general health condition. Also how old are u that u have osteo. Do u have thal major? r u on trf and des? where do stay in London? Are you under the care of Dr Wonke or Dr Modell. Tell me all we could be friends.
nikhil
From: Nikhil Sent: 3/26/2002 11:48 AM
does your son exercise? thats what is recommended to increase bone density? send me the details because i have been to a leading endocrinologist and maybe i can ask him to help
From: Poirot Sent: 4/8/2002 8:18 AM
Hi,
Osteoporosis in Thals is many times caused by a volumetric increase in the blood cells that the bone marrow tries to produce. If you maintain a low pre-transfusion haemoglobin (say, sub 8.0 gms), then the bone marrow tries to counter that by producing more RBCs. Of course in Thals, these would be grossly deformed cells, which the spleen then promptly gets rid of. Consequently, the bone marrow starts expanding and bones become brittle.
I don't know if this fits the case of your son, but my two cents.
Take care
Poirot
From: smiley316 Sent: 4/8/2002 12:27 PM
Hi My son does excercise he is always running around, he is 14 yrs old, he is on a medicine called Fosamax, he has to take that once a week and then he takes Citrical twice a day, he has bone density tests about once a yr, but sees a endocrinology dr every 6 mths, the dr told us he should not play contact sports, but my son still plays sports he does not want to be different, he is doing better with the meds he is taking, if there is anything different that can be done let me know thanks, Dina
From: livevil Sent: 4/8/2002 2:13 PM
Hi Dina,
I am Benjamin, a.k.a., livevil, spelled as one word pronounced as two. LIVEVIL (liv-e-vil). I was 14 when they put me on Testosterone, it helped my growth considerably, but cause severe bone deformation in the toes. not bad, they slant to the outward direction, have no arch.
Let your son be physically active it will help with emotional, and physical attributes towards life. I was very active in gym, or physical ed. class, in high school. When I graduated I have become lazy, and that I regret.
I am 28, a thal major, and 5'3", and look 15 years old. I am so happy to be able to try to work, a normal job, with whatever new thing I might try. I have been an apprentice mechanic, a parts clerk, prep cook in two Italian rest. and a Greek rest. I have also put 5 years in a Wendy's, and two years ago, I was a short order cook. I am now going to college to become a photographer, and I ride a bicycle, shoot billiards, and darts, swim when my ports is not accessed.
All I can say is talk to your son, let him know everything about his treatments, his possible weaknesses, if he gets upset over them. the one warning I send is he will lose and gain friends over the years, those with respect and morals will help him realize sometimes he isn't normal. And it is time to rest, or time to stop.
All, this happens with trial and error in life and his choices, but he can enjoy life if he is aware. We all have limits, some less then others, be careful and he will have fun. I have never broken a bone, but I have had several pumps get ruined, and several times the subq needle has accidentally been pulled out.
Well I have rambled quite too much for one speaking, just don't pamper, or disguise the reality of thal. The more he knows the smarter he will be, and occasionally like all defiant also. Check out my article on Lisa's website.
www.thalsite.com In the Article's section.
From: smiley316 Sent: 4/8/2002 3:20 PM
Hi Benjamin, my son is 5'3 and he is 14, the drs think he is growing ok, but at a slower pace, he does get upset over his treatments,he does not want anyone to know, but like you said friends come and go, I always tell him that, its good to hear that other thals have had bone and growth problems, so that I can relate,(not that its good that you had the problems) here at our hospital we do not have many thals, well I will check out your article, thanks for sharing your experience, Dina
From: livevil Sent: 4/9/2002 11:08 AM
Dina,
I think your son will do just fine in life. But he might need to talk to people his age about it. It can help them to understand maybe why he gets tired, or why some days he's not at school. Kids make stuff up, when they don't know, and if he can find a few to trust, I think he will have made life long friends.
Also, I meant to tell you I am getting a bone density test tomorrow, and m primary wants me back on fosomax, and 1600 I.U. of calcium. And, he wants me on 800 I.U. of vitamin D. I am over the meds, i take my pen v k, and my desferal. Leave it at that, but oh well. Maybe it will prevent a break, if I do this.
Ok I have got to get to college, getting ready for finals in two weeks. And YOUNG MAN, I wish you all the success with high school, and in the future. Life is what we make of it, and we make it better by being here longer than our doctors tell us. So, on that note, Keep on Pumpin', and Des-fer-all, etc., etc. Remember this the friends you can tell, will be there, and if not, they were not friends. Try to use the Thalassemia as a oral report one day, you might find some people apt to change for the better.
I did that in just about every class from 3rd grade up to my senior year. And, it helped greatly, I was due for blood one day and my phys. ed. teach, looked at me. He said I looked like I just walked out of the morgue. I told him I know, he than said take it easy and go work out in the weight room, or swim on the pool. I got to work out both physically and mentally, in the pool and the weight room. I earned a greater respect for my teacher that day, he respected the fact I could not play baseball. Instead of writing reports like the rest of the students, I was able to lift or swim, I stilled played B-Ball, Basketball, and football, or hockey, but on days I could not there was something I could do.
From: smiley316 Sent: 4/10/2002 1:15 PM
Hi Benjamin, I wish there was someone that my son can talk to about what he goes through, he has friends but none that understand thalassemia, he will not tell anyone in school where he goes every 4 wks, his teachers know but thats it, once went on a over night trip with his school, and the dr said you can do without the desferal for 2 days but you must take your pills, well he did not take his pills, he was to embarrassed, maybe he will one day be able to talk to someone his age, my son is also on the calcium, but he takes citracal 600 +d, he also take the penicillin and folic acid, sythroid, and the Fosamax, ever since he got on this Fosamax his osteoporosis has improved, hope your bone density test goes well for you, joey will get his on Monday when he goes for his blood, well talk to you later Dina
From: deleted Sent: 4/11/2002 4:31 AM
Where you live at? You may be surprise that someone have Thal may live close by.
I agree with exercise help a lot. I am regretted that I am already 21 and losing time on reinforce my bone. I wish I have exercise more. Now, I tried to make it a hobby and it is hard for mew as I do not enjoy it...
From: livevil Sent: 4/11/2002 9:52 AM
Hi Joseph, and Dina;
The best thing that you can do is just talk, it is not something to be embarrassed about. This is your survival, and I think letting people know will help build a support group. My parents did not keep me out of the doctors meetings, grant it at 5 when I started the desferal it was intimidating. But when I was getting older, it helped, I have had a few jobs, people have treated me differently.
But, I have moved on with life, please email me at fordz6block@yahoo.com , or bfw2874@aol.com , use these screennames for the instant messaging if you have either. It would be cool to talk to you both.
I am going back to my 10 year reunion in November, you can not believe how great it feels. I can actually show up, and they do not have to put me in the scrapbook as an obit. article. I can't wait, Rochester, NY here I come. Class of 1992, let's party. Just not like we all used to, I plan on partying conservatively.
Well good day, and each friend you talk to I bet they will understand. Show them the stuff on the web that have to do with thalassemia. You will be surprised. I bet there sincerity and compassion with being your friends, it will be real and there. If you have an email address I will get some of my infusion photo's I took, and desferal shots scanned in to send it to you.
You should have seen my class mates when they saw the picture of a IV needle in my arm, with a little blood in the line. They were all grossed out, but when I explained the image and then who it was, they seemed to calm down. I got a kick out of it.
Well I am off its breakfast time. Talk to you soon. Benjamin
From: smiley316 Sent: 4/11/2002 11:04 AM
Hi hay cheng, I live in Illinois, do you also have osteoporosis? at what age where you told? Dina
From: deleted Sent: 4/11/2002 6:05 PM
Hi,
To be honest, I don't know I have it or not. What my doctor tell me is that my bone density is low. I guess I have have osteoporosis. This is a really recently new as I just have my bone scan. They will discussion it further with me soon. I guess I need more exercise and more Ca.
From: smiley316 Sent: 4/12/2002 1:53 PM
Hi your dr will probably put you on calcium and tell you to do lots of excercise, ever since my son has been on his meds,he has had better bone density test, Dina
From: waxonline Sent: 6/5/2002 7:14 PM
i have, due to hypothyroidism, hypogonadism, growth retardation. and reduced glucose tolerance, though i haven't developed diabetes.