Parenting, Family and Thalassemia - Thalforum

Vik · February 27th, 2006, 07:39 PM

Hi,
I've been wanting to ask this question from everyone for a while now.

On a day to day basis, the parents - moms and dads get so tied up with life and work as well as coping with the management of Thalassemia with their child that some of the most obvoius things are overlooked.

There are many things that go amiss while dealing with the daily hectic life and managing a thalassemia kid and lately a lot of emphasis is being given on this topic in Thal Meets and thal publications as well.

A few of things I noticed in my life while I was growing up that I will share and hopfully more members can add their thoughts, comments and experience as we go along on this.

I am hoping your comments and views will probably help parents who have a child with Thalassemia as well as parents who have more than one child in the family and where one of the child is affected with Thalassemia.

My parents have been way too much over-protective while I was in high school... in was a good thing in many ways because I got a big share of pampering, in school I was excused from 'physical training' classes if I wanted, I did not have to stress myself too much during exam time and I was never expected to score high marks.. If I got good grades it was good but if I did not get very good grades - i was let go with ease unlike my younger brother. I am the eldest of the 2 brothers and I realised at times the focus and attention was way too much on me.

I would'nt say it is no fun getting pampered and over-protected but I'm wondering if it would be any different if parents were not as tenderhearted as they usually get...which I beleive would be normal too in this cicumstance.

any thoughts?

Vik

poppy · February 28th, 2006, 12:52 AM

Hi Vik! My up bringing was totally the opposite. I tried to get out of physical education but no luck!!! My doctor at the time said that It was good for me to exercise.

My mom was a stay at home mum while my dad worked. So you could say my mom Was my primary carer giver. When i was younger she used to be the one to inject me with my desferal. She made sure that every night i got it no Excuses or tantrums worked. Even when i was a teenager and was injecting my self she made sure that i did it every night.

As for my everyday life and schooling both of my parents expected the best from me. I was not allowed to use thalassemia as an excuse for anything, and i was treated as a 'normal' person. I was able to work 2 jobs to put myself through university where i studied teaching and graduated.

Vik · February 28th, 2006, 09:24 PM

Hi Poppy. Thanks for your post.
I must say you're parents did a good job!

I didnt have major problems when I was in juinor high school.. attendance was always good and didnt have health problems but somewhere around 10th grade I had a couple of accidents.. and ended up with fractures - my folks became very senstive about my health.. and it went on that way till I finished high school.

I finished my Bachelor's in 1998 but had they given me a good kick in the a$$ I might have ended up somewhere else..

Another thing I've heared from many friends who have thalassemia is how parents are always influenced by remedies and herbal cures - just about anything that would be a miracle cure for their child. I think this thinking/influence is more on people in developing countries who are led into believing about herbal cures, ancient medicines, etc.

poppy · March 1st, 2006, 11:04 AM

I think that was the case for my parents. When ever they hear about something new they tell me about it but are cautious. When i was a teenager a doctor said that i could be cured by a bmt, so my parents tested my siblings to see if i was compatible but when they heard the risks involved they decided against it. When i was an infant /child my mother kept trying to stuff me with food as i was skinny hoping that this would help with my anemia.

Prince · March 1st, 2006, 03:41 PM

Vik,

A very important topic to discuss. I have posted regarding the same earlier too. Let me tell you one of my most recent experience:

2 days ago i went to for my BT. on the next bed to me was a 16 yrs (approx) boy who had come for BT with his father, his father started talking to me as he got curious (This might be as i had to attend so many calls from my work place & he must have heard my coverciations which were quite proffessional in nature). He asked me what I have done in studies & what was i doing now. Then he told me that his son has left the studies as they do not want to burden him with studies as he was a thal & things are already bad for him.

I explained him that first of all he needs to change his preception about his son. He needs to be convinced that his son is no less than any other normal human bieng. I chated with him & his son for almost 2 hours & finaly was able to convince him thet he needs to motivate his son to re join his studies. Finally I was able to convince him:

Guys I feel that following should be the areas to work for all of us:

1. Try generate enough of charity funds from corporate sector, so that those funds can be channalized for the medication of those thals who can not afford chilation tharapy (in 3rd world countries)

2. Create awareness by conducting seminars at public places like schools & collages.

3. Educate parents of Thals who think the situation is hopeless & that their kidz are in really bad condition.

and this initiatives has to be taken by the first generation of mature thals who have the capacity to change things. I say 1st generation coz here in 3rd world countries its quite recently that thals have started surviving even after their 30st due to proper chlation therapy.

poppy · March 1st, 2006, 07:42 PM

Prince,
Since joining this site i have come to realise that the treatment that i take for granted is not available to all people especially third world countries. There has to be a way which we can help to overcome this!!!!

Education on prevention is good. But we also need to do something to help those who cannot afford treatment.

Vik · March 1st, 2006, 11:27 PM

Prince, You have explained it very well in your post. You are absolutely right.

I think it is very tough for parents to push their kids sometimes especially when they see their kids suffer during their illness. I am not a parent and perhaps am not able to know the EXACT sentiments of how a mother/father think about their sick child but I think it is very important for the parents to believe in their child.

There is no doubt that circumstances and access to things like healthcare and education have the most important role in determining a lot of things in life and thats true Poppy it's especially hard in some countries.

You guys are right that something needs to be done and there has to be a way to overcome this problem.

Keeping on track with the post, I also feel really sorry about our siblings too who sometimes get a hard time because of us. I'm sure some of us have younger or elder brother and sisters who understand the medical condition and try their best to help us as they themselves learn to adjust with it, while in some cases the sibling relationship turns sour.

faris rivera · March 3rd, 2006, 04:42 AM

As a parent of 2 thalaesssemics, its really a big burden emotionally and financially. You always have to show a brave front in case they get depressed whenever its time for BT and desferal administration. You should always be there to encourage them everytime they asked me when all these treatments will stop. In school some of their classmates ask them why their eyes are yellowish. I have to inform their teachers of their condition in case they were asked to join strenous physical activities. Of course I am sometimes overprotective of them, i always remind them not to tire themselves, not to sleep late and if they have taken their medications. They are very normal children and you will not think they are suffering from this illness. I think they have gotten used to the regular BT, they sometimes complain but I explain to them thats the only way. . I think we have to show our love care and emotional support to them so it wont also be hard for them to accept. Also a great faith in God is needed. I always read forums like these to educate myself about thalaessemia because here in our country the thal organization is not so active. But I heard from our coordinator that we will be preparing to coincide with the big event in May I think the THal Organization meeting in Las Vegas. Also, our coordinator said we are drafting a letter to Novartis if they could supply us with oral desferal.

poppy · March 3rd, 2006, 05:31 AM

Faris your doing a great job!! I sometimes think how brave my mum was when i was young and she had to inject me. It's not easy!! Encourage them to do running or some sort of exercise as it is good for the heart. Not anything too strenuous.

faris rivera · March 6th, 2006, 03:18 AM

Thanks Poppy for that and I think you're great too coz I have read some of your comments/advises/thoughts and you give me encouragement. This month my children will be monitored for their heart and liver condition and ferritin. I will take note of your advise regarding exercise for the heart. Take care !!!

Heather13 · September 18th, 2006, 12:08 AM

I'm a single mother and a full time graduate nuring student with a 4 year old with Beta Thal. Luckily I'm in a profession where people understnad or atleast fake the funk and pretend to understand my situation. I cant say it isnt hard but I am so blessed to have this little girl that I make due and deal with life on a day to day basis. Sure its hard to manage schedules when I need 2 days free every 3 weeks for medical BT appts but somehow I manage.
You know, the most stressful time for me is when we made the switch from the pump to the nasty liquid drink ( what the heck is it called? the FDA just released it - brain fart!) I used to chase her around wiht the cup begging her to drink it. We are back pumping now - her choice - and our routine is back on track.
I try my hardest to give her a "normal" life - shes in daycare and takes karate and gymnastics ( always beign careful to protect the port-a-cath. Funny story - I got a call last week from her school that she has a spider bite and it was very swollen - I was so frantic - I rushed over there to find out that the port-a-cath with two puncture hoel scabs were mistaken for bite marks and the port-a-cath was the swelling - what a relief.....lol.....the poor baby was so upset - she kept thinking spiders were on her - she didnt understand - lol.....

so, anyway - life is the way it is - I have high expectations for her - shes a regular kid - but special in the sence that she has to pump and goes to the hospital often - she doesnt know any differne t- this is her life - we dont hide it or shame her - she wears her pump in public and will tell nosey people that it keeps her strong and healthy. shes a busy bee at the hosptal and proudly shows off her " button" when new families are in for port-a-caths......shes an awesome little girl!
We found out she has Betah Thal when she was 4 months old - I didnt want to love this baby that I thought was goign to die so I didnt - I stoped breast feeding and didnt hold her for a month - I've educated myself about the disease and have realized thta I was blessed ot have this baby - that God gave her to me b/c he knew I would love her and give her an amazing life. I strive for that - I stirve to make her feel more loved than any kid she knows. She has rules and boundries - she sits in time out - just like any other kid.
I hope that other parents will realize that tehy arent alone and that theres more of us out here - we can really bind together and support each other trough tough areas in life - the road is long and its scarry but we arent alone.

wow! its midnight - night night all.....

Heather13 · September 18th, 2006, 12:08 AM

I'm a single mother and a full time graduate nuring student with a 4 year old with Beta Thal. Luckily I'm in a profession where people understnad or atleast fake the funk and pretend to understand my situation. I cant say it isnt hard but I am so blessed to have this little girl that I make due and deal with life on a day to day basis. Sure its hard to manage schedules when I need 2 days free every 3 weeks for medical BT appts but somehow I manage.
You know, the most stressful time for me is when we made the switch from the pump to the nasty liquid drink ( what the heck is it called? the FDA just released it - brain fart!) I used to chase her around wiht the cup begging her to drink it. We are back pumping now - her choice - and our routine is back on track.
I try my hardest to give her a "normal" life - shes in daycare and takes karate and gymnastics ( always beign careful to protect the port-a-cath. Funny story - I got a call last week from her school that she has a spider bite and it was very swollen - I was so frantic - I rushed over there to find out that the port-a-cath with two puncture hoel scabs were mistaken for bite marks and the port-a-cath was the swelling - what a relief.....lol.....the poor baby was so upset - she kept thinking spiders were on her - she didnt understand - lol.....

so, anyway - life is the way it is - I have high expectations for her - shes a regular kid - but special in the sence that she has to pump and goes to the hospital often - she doesnt know any differne t- this is her life - we dont hide it or shame her - she wears her pump in public and will tell nosey people that it keeps her strong and healthy. shes a busy bee at the hosptal and proudly shows off her " button" when new families are in for port-a-caths......shes an awesome little girl!
We found out she has Betah Thal when she was 4 months old - I didnt want to love this baby that I thought was goign to die so I didnt - I stoped breast feeding and didnt hold her for a month - I've educated myself about the disease and have realized thta I was blessed ot have this baby - that God gave her to me b/c he knew I would love her and give her an amazing life. I strive for that - I stirve to make her feel more loved than any kid she knows. She has rules and boundries - she sits in time out - just like any other kid.
I hope that other parents will realize that tehy arent alone and that theres more of us out here - we can really bind together and support each other trough tough areas in life - the road is long and its scarry but we arent alone.

wow! its midnight - night night all.....

aditya · September 22nd, 2006, 10:21 AM

I have a 1 year old son who was diagnosed thal. major when he was 3 months old. He has had 6 BTs so far. The Iron chelation is done directly after the BT, every 4 weeks. We are in South africa and the medical guys know very little about Thal. My eldest son was tested for tissue match so we can do BMT on his baby brother when he is 2 yrs of age. There is no match with his brother so I am not sure what happens next. I have asked the paediatrician about nutrition and other tests but it seems as if he is not very knowledgeable about Thal. Can some one with similar experience share their knowledge with me?

I am also giving my son 1 tablespoon of wheatgrass juice daily (is that OK?) I feel as if I can do more if I knew more.

I can empathise with other parents as it is very difficult to manage work, child with Thal., BT and their siblings. I am extremely relieved that my medical insurance pays for BT and chelation therapy.

I shudder to think what the parents in poorer countries may be going through, when they cannot afford BT and iron chelation therapy.

Thank you for this wonderful forum.

Vik · October 7th, 2006, 10:46 PM

Heather, the new drug is Exjade (weird name eh!!?)
Well, im so glad it is out there now .. so no more subQ needles and pain. How the Exjade that working out for your daugther?

Parenting is itself a challenge for all parents and thalassemia complicates it further but thats true, just to know and read how other parents are wroking their way through this makes it much easier to cope. And if you can in some way communicate and exchange and share ideas then it becomes a whole lot easier.

Sometimes, I sit with my mother and talk about what I read on thalforum and messages posted by parents. Unfortunately for them, online forums, internet, support organisations were not common as getting information was a challenge. But parents now are very smart and up to date, which is great!

Aditya, I tried wheatgrass for almost 2 months and then left it. I am not sure if wheatgrass is high in iron or not, my iron levels are not the lowest and I did not want to experiment. I know those taking wheatgrass generally take it empty stomach, first thing in the morning.

Diet and nutrition is always an under-rated topic. Although there is no specific restrictions, I personally stay away from iron-rich food - especially red meat, other than that I eat everything else and my diet is mostly vegetarian.

Neel_R · November 20th, 2006, 11:50 AM

If I had a child with Beta-Thal, they wouldnt be getting any special treatment!
Hell, I would make then work harder. No way I would let them out of Phys Ed, physical activites should be apart of every kids daily routine.

Vik, dont you think thats odd that your parents would deem it OK to not have you get good grades? Shouldnt you get better grades if you are sick from Thal...that would mean more time to study!!