Will start first transfusion - how did (anyone) prepare their child?

The energy bag is the coolest thing to call it.   I hope your daughter is okay by now.

Lei what a great analogy, you are getting your Red bag. I will call  my daughter's her energy bag. Thanks so much I aprreciate your comments.

Just wanted to keep everyone updated. We have done three transfusions now. The second one went better and so did the third. Physically my daughter is doing very well. The red cheeks, the energy level are all signs she is responding well and that she really did need the transfusions.

The emotional side is a whole different story. She is an angry little girl. At the hospital, for any procedure, even taking a bone density scan takes a lot of coaxing, bribing, threatening to get her to cooperate, and even then she does not. I tell her there is no pain in the procedure its just a picture of her bones. The technician was super nice and patient and allowed her to see how the camera worked, but still she refused to cooperate. Each hosipital visit is a screaming match and her anger is mostly directed at me. She is mad I am letting all these things happen to her. I feel for her and am at a loss to find the right words to comfort her.

I tell her thalassemia is not a punishement from God. I do not know why she has this but life is like that and we have to deal with what we get. Some times these are difficult concepts for a 6 year old. I know the days when we do the transfusions are hard on her. It is no longer the fear of the needle, it is the whole processs. We make it a smooth and as a "fun" day with lots of activities. My daughter comes out of the hospital skipping and jumping. My husband and I come out dragging with no more energy in us.  Her anger is spilling over in other places  too. She is a different child. I mourn the lose of her innocence and carefree ways.

Alexia, I think you are doing a wonderful job in such a difficult situation.  It must be so much harder with an older child -6 is so young but a lot of us were babies when we started transfusing, but being 6 your daughter will be so much more aware and confused with what's happening to her and why.  I grew up with a feeling of acceptance and normality with my treatment but your child has to learn this and it will take a lot of time.  Have you asked for professional help from the hospital.  It may help to have play therapy or ask about techniques they use for older children who have to unexpectedly start a treatment regime.  Any paediatric hospital setting should have plenty of experience and expertise to help guide your family through these initial tough times.  Also have you access to an anaesthetic cream that can be applied to the hands and areas likely to get the IV?   In England they are called emla or ametop gel.  It would at least take away most of the pain during the needle insertion.  I was 5 when I started the desferal infusions and my dad was very brave (!) and allowed me to put a needle in his tummy before I got my first one.  I hated having my parents put my needles in for the desferal so not many months later I was putting my own s/c needles in with help from my mum.  I am in no way suggesting that you do anything like this but as a child I hated not being in control and being pinned down and this was honestly the best way for myself and my family.  I'm sure that you will find your own way of making the transfusions easier for your family too.  You have already done such a great job but I really hope you get more support from your hospital.  Keep positive and I'm thinking of your family during these awful times x

I would recommend joining this webinar. It has been postponed and the new date is March 2.

The Cooley's Anemia Foundation

invites you to attend a webinar (online meeting) on

 
"Helping Your Child Cope with Thalassemia and Chelation"

 Wednesday, March 2 2011

7:00-8:00 p.m. (Eastern Standard Time)

Presented by Lauren Mednick, PhD

Psychiatry Consulting Service

Medical Coping Team

Children's Hospital Boston

 

What to do:

1. On March 2, a few minutes before 7:00 p.m. Eastern Standard Time,

click on the  "Join the meeting" link below.
http://r20.rs6.net/tn.jsp?llr=occo44cab&et=1104626471714&s=533&e=001V_5Cu8IHsXeQIZFF2WfpKTxry2METyIZBrz_NoinbO79okDYtHDHSgz6PNFW_hqhMy8NnGNoH-dJH-XebqZmVEUTOyJHDESm23ePw9tziS8j0ecwK9eQ0OGhqEnPANhdfBeLUUg4ZW1xLIA8VB7xzFBbo0qv8c4spC3O09e_ogd-0w4XGYvaFZb17H69evl0qFvMMAFw0JJfeOvbjpis5Q==
Join the meeting.

2.  Call the foll-free number below:

Toll-free: +1 (800) 356-8372

3.  When directed, enter the participant code below.
all the toll-free number below:Participant code: 8846849 

Have You Used Live Meeting Before?

To save time before the meeting,

check your system 

to make sure it is ready to use Microsoft Office Live Meeting.

 

What Happens If You Have Trouble Joining the Meeting?

There shouldn't be any problem, but if there is, follow these steps:

   1. Copy this address and paste it into your web browser:
      https://www.livemeeting.com/cc/eventbuilderpro/join
   2. Copy and paste the required information:
      Meeting ID: RZQS6K
      Entry Code: present
      Location: https://www.livemeeting.com/cc/eventbuilderpro

If you still cannot enter the meeting, contact support
   

Got any more questions?
  If any of the above isn't clear or if you think you need more information, contact Kathleen Durst at

k.durst@cooleysanemia.org.

 

We look forward to your online attendance on March 2!

This is exactly the type of issue that can be brought up in this webinar and a trained psychiatrist will be giving advice. I am sure they can give you some advice on coping with a child who is having trouble adjusting to chelation.

All are welcome to participate in these webinars. I would suggest clicking the link in advance to make sure any software needed for the webinar is already installed on your computer. This will be a very worthwhile event.

Zedzded thank you for your words of wisdom and comfort. I am in so much grief and frustration, I just do not know how to help my child.

I have reported my concerns about the anger to the Child Care Specialist at the hospital, I have asked for help in finding strategies to deal with this anger. WE have tried roll playing. We have inserted needles on dolls, we have allowed her some choices in the few little things that she can choose,...honestly I can't tell what is working. The child care specialist brought in a blue coloured girl puppet to start a conversation with my daughter. The first time she say the puppet she was very resistant and even afraid of it. The second time around, she wanted the puppet to sit next to her when she got her transfusion and eventually she even had me "talk" for the puppet so she can converse with it.

Her grandma bought her a doctor's kit so she can practice on her stuffed animals and dolls. That seems to work somewhat, she knows the steps and the procedures, but this does not mean she is accepting it to happen to her.

I try not mention up coming appointments till the day before so she has no anxiety.
A gell to freeze the needle entry point is used, it does hurt but not as much.
I guess we just have to keep trying till we find something that works.
Andy thank you so much for the webinar, I will definatly attend.

Alexia,

You are doing all of the right things and I think that she is making progress.  What is required of you most of all right now is patience.  Because you are a loving and caring parent - and you are getting her so much help your daughter will come around.  It is very important for her to be expressing this anger right now - he life has changed and she is angry and it will serve her better in the long run to go through this phase.  I would almost worry more about a child who does not express his/her anger. 

The difficult thing is that your too are having to deal with this very difficult time along with your child, and the change in her personality is probably even more heart breaking than the treatment.  Just be available to listen to her, be patient and calm - she will absorb this energy from you - slowly and learn to be the same way some day.  For now she is feeling like she has lost control over her life - she is being poked and prodded against her will which is traumatic for her.  Children often show anger toward their parents when they feel like this because they can, it is very important not to take this anger personally.  You can slowly let her know how much you love her and that her words and actions hurt you. 

She'll need you to understand that the treatment is overwhelming for her and that she hates what is going on.  You can do this by repeating what she says back to her, affirming her thoughts.  Once she feels understood she will begin to let it go.  If you know any children who have serious allergies, asthma, diabetes etc. you can discuss these situations with her - letting her know that people sometimes have conditions that require special maintenance so that they can be healthy.  That this is her special challenge, and that you are confident that she will be ok with it.

The most difficult thing is that the change won't happen over night - it will take time.  Be patient, believe in her and trust that she will surprise you with her understanding and ability to deal with all of this one day very soon. 

I will make a general post about some of the issues - such as anger toward parents - that children display in dealing with thalassemia treatment.

In the meantime, I am sending you my best - it is complicated and very challenging what we deal with as parents.  You are doing a terrific job and I send you my best.

Sharmin

Thank you Sharmin, you have given me much to think about and use as a strategy to help me daughter.

When my daughter finishes a transfusion, in teh days that follow, she blossoms physically. She gets back into her routine of school and playing. She does not want to discuss her disorder and gets angry  if I bring it up. And I hate to bring it up, I want her to recapture some normalacy back in her life. So I only talk about the next appointment the day before it is to occur. So of course when we head to the hospital again, we have to deal with the issues we refused to address during the in between time.

I hope time will ease this pain and release this anger.
Alexia

Thank you Sharmin for your post, you always have your magical way ease things . Personally you have helped me a lot in dealing with my son. You always know where the problem lies 

manal

Thank you Manal  ,

You have been an anchor for me over the years as well - you've been there when I needed friendship and support most. 

I hope you and your family are doing well,

Love,

Sharmin

I just wanted to update everyone. We have had our 5th transfusion now in April 2011. We planned our day better so the pacing could flow. I only told my 6 yr old daughter one day before she was to transfuse. Last time she knew 1 week before and the anxiety built. We discussed and planned how our day would go. When we arrived at the hospital we would pick up a toy to play with and go immediately into the room to be used for the transfusion and play on the bed. Once we received our needle we would go out for breakfast while we waited for our cross-match. Then once we were hooked up for the transfusion, she would watch a new video we had picked up. 

All went well till it was time to get the needle. The screaming and fighting was intense. She is still angry, I know it will take a while to adjust. We didn't go out for breakfast, we stayed in the hospital.
The rest of the afternoon went well for her. Until it came time to remove the bandage that hold the needle catheter in. She removed 1/3 by herself, then just had a melt down. She didn't want anyone to touch her, we tried so hard to get her to cooperate. Finally we pinnined her down on the bed to remove the bandage and needle. Even after all was removed, she continued to kick and scream. It was very stressful. When she calmed down, we hugged each other.

Alexia,

I hope and i am sure this will get better  she might take her time but she will get used to it,its been 7 years my daughter started transfusing and after a while she started considering her hospital visits as meeting with friends or just eating snacks and watching cartoons like a picnic it will take time but it will happen eventually,My thoughts are with you  .

Zaini.

Alexia,

You are doing a wonderful job with your daughter's transfusions.  Remember, all of these changes are happening to her later in life than many of the other thal patients on this site. 

Your daughter's reaction is actually quite appropriate, and although it may not seem like it - it is a good thing that she is displaying her anger rather than repressing it.  I was speaking with a psychiatrist earlier this fall, she deals especially with children who are treated for chronic conditions.  She also told me that it is a good thing when children let you know that they are angry about things.  Although we don't want it to become self pity - we need to give her a chance to express her rejection of what is going on.  She will eventually accept the situation, but it will take some time.  For now, don't worry about her anger too much and continue to have a more neutral disposition.  When she expresses her feelings, validate her feelings.  Even us adults have bad days and feel like things are unfair somedays - if someone tells us that our feelings are baseless and a sign of weakness the situation becomes worse.  If we are understood - we can usually move past the negative feelings.  Children are the same.  For now the best thing you can do is validate her concerns and let her know that you understand her feelings. 

We usually have our son's blood drawn for cross match the day before transfusion - this shortens our transfusion day greatly.  Is that practical for you?  In the meantime, keep doing what you are doing - when things become a routine your daughter will begin to enjoy transfusion day - and it will happen soon - I am sure of it ;)  For lil A - a chocolate covered donut on transfusion day was a great motivator when he was little. 

All the best and keep us posted, we're all here for you!

Sharmin

We usually have our son's blood drawn for cross match the day before transfusion - this shortens our transfusion day greatly.  Is that practical for you?  In the meantime, keep doing what you are doing - when things become a routine your daughter will begin to enjoy transfusion day - and it will happen soon - I am sure of it ;)  For lil A - a chocolate covered donut on transfusion day was a great motivator when he was little. 

Sharmin

Sharmin,

Just something that struck me when reading the above post, and the previous posts by Alexis - why do they not store a sample, from the previous transfusion, at the centre for cross-matching on the date of the transfusion? They can start the cross-match well before you even arrive at the centre.

Thanks

Poirot

Poirot,

That would be a great idea, except with each transfusion there is the chance that a new antibody may have arisen in response to the previous transfusion.  The procedure here is that a cross match sample cannot be drawn earlier than four days prior to the time it is transfused. 

I really do think that it would be best to draw the blood one or two days before the actual transfusion.  That way there are fewer pokes and less time spent at the hospital on the day of transfusion. 

I hope things go better with each transfusion:)

Sharmin

Poirot,

That would be a great idea, except with each transfusion there is the chance that a new antibody may have arisen in response to the previous transfusion.  The procedure here is that a cross match sample cannot be drawn earlier than four days prior to the time it is transfused.  

I really do think that it would be best to draw the blood one or two days before the actual transfusion.  That way there are fewer pokes and less time spent at the hospital on the day of transfusion.  

I hope things go better with each transfusion:)

Sharmin

Sharmin,

I guess with your son's antibody problem, that may be a preferred solution, although I am still a bit dubious about the science behind the logic being used by your centre. Still, if it works for your son, that is good.

At my centre, we do not have an additional poke for the cross-match - they take the blood sample(s) when they poke you for the transfusion - this is stored for the next cross-match. At the next transfusion, they take a fresh sample, while discarding the previous stored sample. So, as such, the gap between detection of a new antibody would always be one transfusion cycle only. Has worked well for us for the past 40 years.

Cheers

Poirot