just started with the dreaded daily needle

hi guys,
what an emotional week this has been.  on monday christian started chelating with desferal.  i have been going into the hospital very day since to be trained on how to do it.  i have also been using every excuse under the sun why i am not actually doing the procedure myself.

i am just not ready!

the transfusion is a breeze comapred to this.  i can support my son, give him comfort and talk to him to distract him from procedures such as tx and MRI's and  xrays but i am having a real problem with becoming the person who injects him.

what is really tearing me up is how is personality changes when the pump starts, he gets depressed, and walks hunched over so that he doesn't stretch his body, he just want to sit there and not particiapte and the worst thing is when he told me that he likes transfusion needles but hates these needles. 

i have not shown him my fear and my tears but watching him on this downer is killling me. 

so i admit it - i am not very good at this and i was wondering about talking to the docs about combination therapy.  how old is the youngest person on the forum who takes exjade.  i know of one 6 year old at christians hospital  on it as her mother did not want to go down the desferal road.

I take my hat off to all of you and your families who were vigilant in giving desferal but now there is another choice.  if i didnt have another choice i'd have to do desferal 6 nights a week but if there is an option to do it only 4 nights and exjade for the rest i'm all for it.

what do you guys think?

vic

Hi Vic,

please be strong, everything will be okay,you are a brave person ,i  am sure,first of all how high is christian's ferritin level,and what time are u using the pump? night or day?,it was very hard i remember when we started it ,but gradually it became a routine,will u believe my daughter gets angry with me if i become a bit lazy about her desferal therapy though she is using ferriprox  also,why don't u go for ferriprox?it's easy to administer though it has some side effects,but so do exjade,,my daughter is using ferriprox since last year when she was 5 years old,,so think about it,

 

take care,we all are with you.

ZAINI.

Vic,
Your story is similar to so many of other's. It is so tough, words cannot describe it. I can feel the pain you are going through, but you are doing this to give christian a better tomorrow. We can't reverse what has happened, but we can do what is needed to and this is one of the hard things.

Can you try and let him do whatever he likes the most after starting desferal like watching his favorite show for a while and then go to bed. That way, he can keep his mind a little away.

At the TAG(Thalassemia Action Group) Conference last weekend in Boston, I did ask Dr Neufeld if Exjade is recommended to patients who are below 6 and he did mention, there is a need for more study on it as there is no data from clinical trials, but the FDA(Food and Drug Administration) has been Approved it here in USA for children below 6

Dear Vic,

My heart aches for you. i have been thinking of you daily,remembering Christian was going to start chelation(just as Lauryn started transX).

Lauryns hemo said that we might strt her on exjade first.. when did chris first start transX? lauryn will be around 2 when she begins chelation....i laughed at the doc and said yea right, Its easier to give the needle then an effervescent drink to a 2 year old  .... so i assume it would be safe? . i guess we have some time to ask questions and research. BTW, is chris a major or intermedia?

please be strong, and I sware to you, from the bottom of my heart, that there will be a cure for them. we just have to keep them well until then
i il pray for you. kiss that handsome little man for me!!!! :blowkiss

Love,

Christine

Hi Vic,

You are right. The first experience of Desferal is more dreaded than the first experience of TranX. I remember that, at my beginning experience, my sister used to grab me with my hands behind my back (like a cop arresting someone) and my dad pinned down my feet with his so that I might not kick or run away, to get the job done. I used to put up quite a fight   and I even remembered once I was visiting Pakistan and dad was still back in KSA; my family called a doctor to the house and he didn't pin down my feet and got what was expected of me I'll never forget that kick!

So, in the beginning Desferal can be a painful experience for both the patient and the person putting it on. However, as time passes, things get easy.

As for the walking with hunched back; ask Christian to stretch maximum AFTER the needle is inserted but BEFORE taping it down. His skin will be stretched and when you tape it down ask him to relax. This way he can move freely and when he lies down, the tapes won't pull on the stretched skin.

I believe things will go easy in the future since Christian is a brave little soldier.

Take care, Peace!

Vic,
     I didn't start transfusions and chelating until I was an adult, so I don't have much practical information for you, but I really feel for you. It has to be so difficult as a parent to go through this. I just wanted to give you my support and to let you know I'm thinking about you and your family. Christian is so cute in his picture! Good luck, Jean

Dear Vic

I really feel for you and can imagine how it really hurts both Christian and you now. But i know that things will be better. I think it is a good idea to change to exjade. They use it in my country for kids who are the same age as christian

I will pray for you

Manal

thanks to you all,
each post was what i needed to hear.  i know i'm not the first and unfortunately i wont be the last to go through this ordeal.

sajid, good advice about getting him to stand up before we put the tape on i think that was what was bothering him - the skin hadnt stretched.

at the moment his ferritin levels are 1700 and we are using 500mg of desferal diluted with 10ml of water.  he weighs 20 kgs. 

thanks christine for your eternal optimism. i keep wishing that there is a cure.  BMT is out of the question for us.  even if it is a small chance of death we think that statistic is way too high and we could not take that risk.  we are too chicken to do a little needle let alone have him endure a BMT.

i was thinking about why this part is affecting me so much when all along everyone thought i was so strong.  i have taken full charge of christian from hospital admissions pre diagnosis, to staying by his bedside for 8 nights in a row when he was in pain and on morphine (he has sickle cell with thal minor), i have been there for every single transfsuion even with a newborn in tow (Zac) but the desferal part is overwhelming me.  Maybe it's because i have never ever smacked christian, he has always been such a good boy that i cannot be the one who inflicts pain on him.  i know i have to overcome this because my logic tells me that injecting him is for him to live a long and happy life but my heart cries when i see his sad little face after the needle goes in.  i will persevere and for the moment my husband has been a trooper and come to the rescue.  i guess i never let him have any control over christians illness before but now that i am having major panic attacks my husband has stepped up to the plate and is taking charge.  and guess what i  quite like it.  i always thought if anything ever happened to me nobody would know how to take care of christian like i do (inclusing my husband) but this is probably some higher powers way to show me that i can share the load and say out loud i'm not superwoman after all.
vic

I feel for you.  I know how you are feeling, starting desferal is very difficult.  We began desferal when our son was 18 months old.  He was devastated and he seemed so angry with me (because I was the one doing his desferal).  He would keep his stomach covered at all times, and would quickly lower his shirt if his belly was slightly bare.  His screams were unbearable at the time, it was so much worse than the transfusions. 

With time however things did get much much better.  We found ways to make him feel better, we gave him more control over the process.  We always let him press the start button.  Now he understands how important it is for him and believe it or not actually likes his desferal because it has become so normal to him.  He gets a vitamin 1/2 hour after beginning his desferal and he loves his vit C. 

Trust me, I understand your pain very well but it will get better.  Children (over time) begin to read your expressions, if you make the whole thing very matter of fact and quick (rather than fussing about it) he will soon behave in that manner as well.  Desferal is the best thing that you can do for your little boy and I know that you will find the strength to get through this.  I don't know how it did it, but I did. 

If you would like I can have him write his feelings about it and you can read it to your little guy when he is ready. 

I wish you the best.