a 3 year old boy

  • 10 Replies
  • 12231 Views
*

Offline qys81

  • *
  • 11
a 3 year old boy
« on: July 20, 2011, 02:57:40 PM »
My friend has a boy whose thals major, he is 3 years old now. We are all in China. Because the mother can not speak English, so she ask me to help her for some questions. I am so sorry my English is not good enough, but please spend some time for the little boy.

1. About medicine for iron.
In my country, normally there are three kind of medicine: desferal (injection) 0.5g;  film-coated tables deferiprone; Exjade.
The boy is using desferal injection two days a week.(he is getting blood every 3 weeks). The cheeper way is to use desferal or Exjade, because in my country if you buy 3 months Exjade, the goverment will pay the rest 9 month, although Exjade is more expensive. The boys mother wants to know if it is enough to use desferal 2 days a week, is it better if switch to Exjade.

2.The boy is eating less during days before his blood transition, is this normal, or is there any way to improve is.

3.In my country, there is not much people know about thals. Somebody think this is a terrible disease like cancer. A lot of kindgarden refuse kids like her son. So she does not tell the boy about his illness. every time the boy get blood , she tells the boy that is medicine. When did you guys tells your child the truths, how does the child react to this illness. How  should she take care of her boy emotionally?

Thank you all for your time and patients.

Re: a 3 year old boy
« Reply #1 on: July 20, 2011, 05:26:44 PM »
I think your English is fine. This is great that you are helping your friend.
 
Now the answers to your questions are as follow:
 
1. Desferal as you are aware is given using the pump overnight. The long term side effects of desferal are well known and this is considered as safe drug. Desferal has been in use for the last 40 years or so. Exjade, on the other hand, is relatively new drug, it came out 4-5 years ago, short term side effects are known but long term side effects are not known. Most of the children on this forum are using exjade, as it is easy to use (dissolve tablet in water or orange juice and simply drink it), I do not believe there are any major issues with exjade so far. I cannot comment if using desferal two times a week is enough, it all depends on the ferritin level of the child. Also, the parent can decide if they want to switch to exjade. The important point is to have low ferritin level in the body and both drugs do the job well. Please talk to the doctor if they want to switch to exjade.
 
2. It is very common for children to be listless and eat less as the blood transfusion date approaches, It is normal. I do not believe there is much she can do to improve this situation. I would let the child rest and go with the flow.
 
3.This is a very common dilemma in most societies; it is unfortunate but a reality. My advice is to raise the boy just as you would raise a normal kid. One thing you have to understand and let the mother know that thalassemia may sound terrible, but in modern days, thalassemics are living healthier, successful and normal lives. They are getting married and have children of their own. Do not bother trying to explain a three year old, he would not understand. When the time comes he will understand. Just raise him like a normal kid. Just keep up with the blood transfusion, iron chelation and manage the situation.
 
Now, I also suggest you keep coming to this forum and ask any question and we will answer.
 
Please convey to the mother that help is available.

Regards.

*

Offline Madhavi

  • Mohanish....a divine blessing!
  • ****
  • 279
  • Gender: Male
Re: a 3 year old boy
« Reply #2 on: July 21, 2011, 08:21:28 AM »
Hello and Ni hao qys81!

I am in Guangzhou,China. Where are you?

You could get in touch with Dr.Chunfu Li at Nanfang Hospital here. There are many thalassemia patients here from Maoming, Shunde Sichuan,Xinjiang, etc.

Canadian_Family has answered your questions already....

Welcome to the forum and hope that all are able to help you solve your queries.

Regards,
Madhavi
Love and luck to all...

*

Offline aabha

  • **
  • 69
Re: a 3 year old boy
« Reply #3 on: July 22, 2011, 03:55:04 PM »
Ni Hao
my son just underwent a unrelated mismatched cord blood tranplant in april.His Hb today was 11.1
you too can approach Dr.Jaing at Chang Gung Memorial children's hospital,Linkou,Taiwan.
all the best.hope your friend's child is cured soon
love
aabha

*

Offline qys81

  • *
  • 11
Re: a 3 year old boy
« Reply #4 on: July 25, 2011, 01:55:40 PM »
Thanks so much for you guys' replies.
The parents of that boys feels so lonely, because they did not tell their friends (except me) about this. I am SO glad I can help.

*

Offline qys81

  • *
  • 11
Re: a 3 year old boy
« Reply #5 on: July 25, 2011, 02:08:19 PM »
Ni Hao
my son just underwent a unrelated mismatched cord blood tranplant in april.His Hb today was 11.1
you too can approach Dr.Jaing at Chang Gung Memorial children's hospital,Linkou,Taiwan.
all the best.hope your friend's child is cured soon
love
aabha
Ni hao, aabha, are you from China or Taiwan?
 
I am so happy for you and your son.

Can you tell me some details about the cord blood transplant. You said it is unrelated and mismatched, I know with marrow transplant, there will be rejection even with 100% matched brothers or sisters, but I know nothing about cord blood.

How many casese did the doctor do, and how many were sucessful? How much aprox the cost?

Thanks again for your help

*

Offline aabha

  • **
  • 69
Re: a 3 year old boy
« Reply #6 on: July 25, 2011, 02:29:59 PM »
Hello
I am from India,in taiwan for my son's treatment.
we got a 4/6 match for my son.Dr.Jaing has done more than 50 cases and has a success rate of 94%.all surviving cases are transfusion independent.he has done many 4/6 match transplants and also many double cord transplants for older children.the oldest he has treated is 14 yrs of age.the cost is about 50,000 usd.
please feel free to ask anything you want to know.it will make me very happy if your friend's son is cured.intrestingly there is no thal patient less than 12 yrs of age in Taiwan..Dr.Jaing has treated them all !
love
aabha

*

Offline Madhavi

  • Mohanish....a divine blessing!
  • ****
  • 279
  • Gender: Male
Re: a 3 year old boy
« Reply #7 on: July 25, 2011, 07:05:10 PM »
Hi again, qys81!

If you are in Guangzhou or close enough, you could attend a post HSCT seminar to be held on the 29th-30th of this month at Nanfang Hotel, Nanfang Hospital.

My number is 13728097556.My qq is 1513358676.

There will be lectures conducted by Dr.Chunfu Li and his colleagues at about 9.30am in the hotel in the campus on the 30th.

Here is the agenda, in case you are interested,

造血干细胞移植术后聚会议程
29日所有参会的孩子入住南方大酒店
备注:入住时,以孩子为单位,在谭秘书处报到,拿房间

30日上午
早上6:40   叫早
7:00 准时孩子准时到达健康体检中心集合                    谭秘书点名
7:00-9:00  南方医院体检中心 根据孩子的生长发育情况进行抽血、心肺、肝功肾功等各项检查                                                    吴学东
9:00-9:20   早餐 –健康体检中心
     (8:00前血样送到检验科,争取在10:00前出结果)

集体照:9:20在南方医院正门(孩子、家长、医护人员)
孩子:大会议室                                   主持  义工娟姐
     9:20-13:00 南方大酒店小会议室 义工带领搞活动 讲故事等   25名义工

家长: 小会议室                                   会议主持人     吴学东
9:30-9:45    致辞                                              李春富
9:40-10:00    家长代表发言                                     朱锐然的爸爸 
10:00—10:20      造血干细胞移植治疗地中海贫血经验总结及移植后去铁治疗                                                       李春富
10:20---10:40      恩瑞格临床研究及援助项目介绍                     何岳林
10:40-11:00      奥贝安可除铁                                    冯晓勤
11:00---13:00    对孩子检测结果做相应的评估     李春富、吴学东、、冯晓勤、何岳林
13:00          南方大酒店 午餐

Agenda of post HSCT meeting
July 29, 2011
Time                                            Place
15:00-21:00          Check-in                     Nanfang Hotel

Time
7:00-9:00            Body check                Medical Examination Center
               Children should arrive at Medical Examination Center before 7:00
               Blood sample should be delivered to the clinical laboratory before 8:00
               
9:00-9:10            Breakfast                 Medical Examination Center
9:10-9:20            Photos                   In front of out-patient Department
               And then back to Nanfang Hotel ( 5th floor)

9:30-13:00       Children have fun with volunteers       the bigger meeting room
9:30-11:00       Adults would be given lecture          the smaller meeting room
                (Lectures given by Pro Chunfu Li and so on)
11:00-13:00      Bodycheck result analysis (Q&A)      the smaller meeting room
13:00            Lunch-Buffet (all together)               Nanfang Hotel               



Regards,
Madhavi
Love and luck to all...

*

Offline aus

  • *
  • 18
Re: a 3 year old boy
« Reply #8 on: August 11, 2011, 07:59:44 AM »
Hi. My son is turning 8 next week. He has been in line waiting for a bone marrow donour for about 2 years now. I don't think there is much of a chance for a match. I think when he is put in the register, they also consider cord blood. I am just not sure how safe bone marrow transplant is.

*

Offline Madhavi

  • Mohanish....a divine blessing!
  • ****
  • 279
  • Gender: Male
Re: a 3 year old boy
« Reply #9 on: August 12, 2011, 12:54:28 PM »
Hi aus!

You could check with aabha about the registry they got lucky with....
Or you could check with the registries in China or Taiwan.

Regards,
Madhavi
Love and luck to all...

*

Offline aabha

  • **
  • 69
Re: a 3 year old boy
« Reply #10 on: August 14, 2011, 12:12:22 AM »
Hello Aus
we got unrelated cord blood matches through Stemcyte.As 6/6 hla matching is not mandatory while using cord blood we found 3 matches and Dr. Jaing took a decision about which to use.
All of Dr.Jaings thallasemic patients are transfusion independent,oldest being 14 yrs of age.....so you can see he is a excellent doctor and the risk is low as compared to a unrelated bone marrow transplant
you could write to Judy Kang who is the co-ordinator of stemcyte Taiwan regarding a match.just provide her with your childs HLA typing.her e-mail is    jkang@stemcyte.com
you could also write to Dr.Jaing for guidance....his e-mail is........jaing001@cgmh.org.tw
I am positive you too will get a match for your son...just keep the faith and keep persevering  thats really important.We too had been running from pillar to post the  whole of last year.....I know it is tough..all the best
aabha

 

SMF spam blocked by CleanTalk