Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: Alexia on December 03, 2010, 03:20:51 AM
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My six year old daughter is being scheduled next Wednesday for her first transfusion. I'd like to hear from other onhow they prepared their child both emotionally and mentally.
My daughter was only diagnosed this November with Beta Thalassemia Intermedia. It was quite a shock to all of us. I have always known I am a beta thalassemia carrier, so I made sure my husband was tested before we had children. He tested positive for Hereditary Persistance Fetal Hemaglobin, but not beta thalassemia. The genetic counselor assured us (11 years ago) that we would not have a child with beta thalassemia. After reviewing how genetics works and covering the possibilites we were told we would have a 25% chance of having a child that was both a beta thalassemia carrier and HPFH but that they would be pale, have an enlarged spleen but a relatively healthy life. My husband is being retested for genetic mutations that they didn't catch 11 years ago.
My daughter has become severely aneamic, is constantly tired and is very pale with a yellowness to her skin. Her spleen has enlarged to 4 times the normal size. The bone marrow in her facial bones has already started overproducing red blood cells. She needs the transfusion, but how do I prepare her for it?
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I'm certainly no expert and I never got transfused until my adulthood, but I can say for sure that the most frightening thing to me has always been the unknown or the surprise! effect.
I actually never took to blood draws too badly because I knew it was to help watch my thalassemia and the people who drew my blood were usually very very gentle with me and patient. On the other hand, I hated shots because the nurses would try and do it when I wasn't looking.
Something I would recommend you do is contact your doctor or the nurse or perhaps the transfusion location's doctor/their office/their nurse/their social worker if they have one and ask for their advice on how to prepare your daughter. Additionally, they might have a few particularly child-friendly staffers who would be able to help make the experience more kid-friendly, approachable, and understandable.
Here is a link from the Children's Hospital in Oakland that might be of use to you:
http://www.childrenshospitaloakland.org/child_life/life_collins.asp
It talks about how some child specialists have approached such issues - explaining and preparing for major health-related procedures.
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Two things that I can think of at this particular moment:
What is your daughter's current understanding level in regards to her thalassemia?
If your daughter already knows about her thalassemia and that it can make her really really tired, you could try explaining to her that there is something the doctor can do for her to help her feel better and you can explain the basics of the transfusion therapy.
When I was younger and even now as an adult, I have always found comfort in knowing why something has to happen. Even if I disapproved of it (getting blood drawn when I was younger, for instance), I would accept it a lot easier.
If your daughter can accept that she is feeling very tired indeed and can understand that her thalalssemia is responsible for it and that a transfusion which is ABC (insert age-appropriate explanation of a transfusion here) can make her feel better, then that will help her be more comfortable about having a transfusion done and will hopefully also help her accept the transfusion procedure itself (getting poked, etc).
How does your daughter feel about getting blood drawn?
If your daughter takes blood draws okay enough, in the process of explaining the transfusion, you could also explain that the transfusion is like a blood draw, but it is giving her the blood instead to make her feel better - one prick and it's done.
Some general thoughts:
In my opinion, especially for children, trust is a very big issue as is a fear of the unknown and unfamiliar when it comes to medical procedures.
If she can trust you and those who care for her (doctors, nurses, the people who draw the blood, etc), then I think it will go a long way in boosting her acceptance and compliance with thalassemia and the medical procedures sometimes necessary to manage it.
With that said, some ways to possibly build and foster trust and to help make the unknown less scary for her (and these are just examples):
- If you promise her no more than 2 pokes, make sure the people who will be poking her know the same and will honor the same promise.
- Try to get a child-friendly team to be working with you and her for the duration of the transfusion. If they can work with her to help ease her fears and apprehensions by explaining things to her honestly and in an age-appropriate way, so much the better.
- Let her 'be in charge' for the day of the transfusion.
I don't mean let her boss people around; that's not it. But maybe something like letting her plan what she would like to do while getting her transfusion and perhaps schedule in a rewarding treat along with it that she gets to choose.
- Pack a special bag just for when she needs to be in the hospital (or wherever away from home for an extended time
This will help her associate the transfusions with something more pleasant and perhaps even something special. Let her choose some of the things to pack - a favorite book, paper and pencils, favorite toy, favorite stuffed animal, a security item of any sort of her choosing, etc - and it will help her feel in control of the situation and will make an unfamiliar environment more familiar.
- Bring along a special home decor item
Some places just... don't look very appealing (one of the hospitals I went to had all white walls with nothing but medical posters - yikes!), so perhaps, a favorite poster (if she likes them) or something to put on the wall or sit on the table would help add familiarity.
- Take her on a tour of the place beforehand
If she has accepted the idea of a transfusion okay enough, then maybe you can ask if she would like to see the place first and have a nurse who will tending to her on the day of her transfusion (or a nurse who is child-friendly in general) give you both a tour? Conversely, if she's still scared of the idea, maybe a guided tour with a child-friendly nurse will help?
In conclusion, I definitely would get in touch with the place she will be getting transfused at and pursue the idea of having her first transfusion experience be as stressfree and child-friendly as possible. :)
All the best to you and your daughter!
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I would like to refer you to a post by Sharmin about what to expect during the transfusion. I will emphasize that you physically examine the blood bag yourself every single time to make sure it is the right type and has your child's name on it. Parents must be constantly vigilant about this. Mistakes do happen but will not if the blood bag is double checked. (This advice comes from Lisa many years ago).
http://www.thalassemiapatientsandfriends.com/index.php?topic=3202.msg32488#msg32488
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Hi Alexia!
I had my first transfusion as an Intermedia when I was around 20 years old. I remember I would joke about it and say I need to get a red IV so I would feel better and have better color on my skin. There were kids who have severe anemia or leukemia patients that I would meet at the ER and I would tell them that. That's the easiest way to make a child feel better about getting a huge needled IV in her veins.
My mom then would check the blood 3x if its exactly the same blood type I have before they proceed with the transfusion and never neglect that. Wrong blood can cause severe if not lethal damage. They have now what they call compacted RBC which is a purer form of blood especially used for transfusions on Thals and other RBC related disorders.
I hope your daughter feels better soon. God Bless!
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I want to Thank ALL of you for responding. I have been logging on intermitantly since I first posted my question to see if anyone would reply.
HbH, thank you for your detailed guidance. I have called the nurse in homecare and she will help me explain things to my daughter. We will allow my daughter to lead us and let us know when she is ready to start the transfusion. The nurse has assured me noone wll pounce on her. I am taking your advise and bringing a backpack filled with her favortie things. I have talked to her, but it is difficulat to gage how much she really understands. I have told her that we have red and white blood cells. That the white cells are our soldiers that fight germs and that the red cells carry oxygen or energy to our body and that she does not have enough energy so we are going to give her more red blood cells. She seemed to accept that. She even understood that it will be done through another prick. But she has started to have nightmares and calls out for me at night and wants me to sleep with her.
Andy thank you for that caution. OMG, I will definately check the bag. I didn't even think of that. (Why are the "official Thalassemia sites so bare of important details like this. Sorry I am just frustrated with doctors and organizations that refuse to arm people with information. Information is power.)
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.
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The unknown can be a scary thing at times; my best wishes to you and your daughter!
I am glad to have been able to provide some suggestions; I hope things go smoothly for you both and that this smoothness will set a precedence for the future.
:)
RE: Checking the blood bag
Definitely check the blood bag. Even in the United States in a hospital setting, mistakes can sometimes happen, though during my last two transfusions, the nurse who was setting things up for me triple checked herself and I had to confirm who I was, confirm DOB, confirm bloodtype, etc.
One more thing I thought I might mention:
I am unsure of the environment that the transfusion will take place in (hospital setting? outpatient setting? elsewhere?), but if your daughter needs to share a room with someone (like at a hospital) I would highly suggest looking to see that she shares a room with someone age and situation-appropriate.
Highlight the next block of text between the two >> if you want to see why I make the suggestion I do, otherwise, just skip it.
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The last time I shared a room with someone at the hospital for my transfusion, I shared a room with a terminally ill cancer patient whose doctors gave her the diagnosis while I was still in the room (on the other side of the room behind the curtain). As my roommate tried to be brave about the whole thing, I ended up spending the entire night trying not to cry my eyes out for my roommate. We bonded over breakfast the next morning, but that had got to be the most depressing visit to a hospital I have ever made as a patient and I was well into my adulthood when this happened. Your daughter needs to be uplifted, not put into a situation that will encourage her to have unhappy thoughts is what my opinion is.
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I am happy to report that my daughter will have a room to herself for the first transfusion. It is in a hospital setting but in an out-patient wing. There are other children undergoing transfusions, but most young or older than her. The nurse agreed it was best to isolate her for the first time, make the experience her own, rather then influenced by others.
I am still anxious for Wednesday. I downloaded the "Standards of Care Guidelines for Thalassemia" that Andy refered to in another column, and I have read Sharmin's first experience. I am on information overload, I am trying t retain everyting without going insane. I have never absorbed so much information....
Again thanks to everyone that took the time to reply.
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Hi Alexia
My son was 1 year old when he had his first transfusion. At that time we didn't have to prepare him but in fact prepare ourselves. Today my son is 4 years old and doesn't even cry when the IV is being fixed which is really brave on his part considering he gets a minimum of 2 pricks sometimes even 4 to find a vein. I tell him about his tx date 2 days prior to the appointment. I center the conversation not on what we are going to do in the hospital but rather on what we should do once we are out of the hospital. That day he gets to decide how we should spend the evening. He actually looks forward to his hospital visits.
Children do question and you should give them age appropriate answers. At the age of 2, I told him he has to get blood to make him strong . But this answer didn't work at the age of 4 coz he threw a few stunts to prove that he was strong anyway. Then like someone suggested here I told him the blood which his body produced was funny and doesn't do the work it should. He was very amused with the answer and it did shut his questions for a while. Now his question is why is his blood funny while his sister's isn't. :dunno
lots of well wishes for your little girl
maha
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Hi Alexia,
Based of luck for the Tx...All the previous posts sums up the things to do and look for....As Maha said, please prepare yourself 1st. Be positive about the whole thing. Let your daughter have say what she wants to do when the Tx is going on and after Tx is done. Make her drink a lot of fluid before Tx...it is easier to find the vein. Also using emla helps with the IV insertion.
My daughter is now 4 and we always talk about the fun things she is going to do at the hospital on the day of Tx. I also tell her pretty casually a day or two before Tx that she needs to go for Tx. that helps to prepare her mentally.
Know that your daughter will be fine. You be strong....best of luck...
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Hi Alexia,
Hope everything went well today, please update us :hugfriend
manal
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Please keep us posted. My son was 3 months old when he received his first transfusion. It was given quite suddenly so we did not have a chance to prepare ourselves or him.
Best of luck, I hope everything goes very well.
Sharmin
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Well, its taken me some time to reflect on the first transfusion. It didn’t go well but the results are amazing on my child. The next day I saw a burst of energy and she even had red checks. Wow its been a long time since I saw red checks on my daughter.
I expected a long day and it was. We arrived at the hospital at 9:30 AM. We were shown to a small but beautiful room with a crib and a lazy boy chair. We met with a child care specialist and discussed with my daughter what was going to happen. We even put a catheter into her doll to show her exactly what was going to happen.
Unfortunately she has a huge fear of needles. When it came time for her to actually receive the needle and catheter to be used for the transfusion she started being more agitated and highly anxious. I held her firmly while the nurse inserted the needle. She cried and struggled. I thought the worst was over, but the nurse started probing in her vein and my daughter started screaming and struggling more violently. The nurse was trying to “thread” the catheter through the vein but with my daughter struggling the vein burst. We had to try again.
I knew things were not going well. Try to convince a 6 year old to be brave one more time so we can try again. The nurse decided it was best to try the vein in the crock of her arm, instead of her hand. The vein was a good size and would be easy to access. We couldn’t afford to botch up another vein. We had to have success or we would taint her experience. No amount of coaxing could calm my daughter down. She wanted to leave to go to school and see her friends. She refused to lie in the crib she wanted to sit on my lap on the chair. In the end we got her on the bed, rolled her up in a blanket to keep her legs still from thrashing about. Two nurses held her down, I lied down beside her to comfort her and another nurse jabbed her arm again. It was so dramatic. My daughter called out and told me she didn’t love me anymore, she hated me. (I know that its just a child’s anger talking but boy did it pierce my heart. ) The worst was over. Thank God. Blood was drawn and sent to the lab for matching. We went for a quick lunch and returned in one hour. The blood hadn’t come down from the lab yet.
We did crafts together which were fun, but I remember thinking we are doing too much, the pacing is wrong. When the blood finally came down it was 2 PM. I blessed the blood and we said a little prayer together. She got hooked up and stayed in my arms the whole time in the chair. She was to receive 240 units. They kept checking her vitals every 15 minutes, temperature and blood pressure. At 4 PM she started running a fever. They immediately stopped the transfusion and sent blood back to the lab. The doctor was not too concerned; he said she may have something viral like a cold that she is fighting. The nurse seemed more concerned and kept us an extra hour to ensure no rash on her body. My daughter only managed to receive 140 units, there was 100 units left to take.
The car ride home was just as horrible as we were stuck in traffic due to the extra snowfall during the day. She cried and screamed at the cars to move, she missed her sister and wanted to go home. It was so heart wrenching, but I knew she was extremely tired.
Thank God children are more resilient then their parents. She went to school the next day, she was happy and jumping and had beautiful rosy checks. She looked healthy and vibrant.
I have told her how healthy she looks. She is so happy too. The only thing that broke my heart is when she told me we wouldn’t have to go to the hospital again. She does not know that this will be a regular event, at least monthly…I know I should tell her. But I am so overwhelmed with my own emotions; I want to tell her matter-of-factly and without crying in front of her. Everything has happened so fast I am still in shock.
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...One more thing...
I want to thank everyone that took the time to reply. You have no idea how comforting it has been to hear from other patients and parents. Your guidance an reassurances are appreciated.
Again many many thanks to all, Alexia.
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Dear Alexia,,
You did a wonderful job :clap
I know that it was a hard expierence for you and your daughter but it won't be the coming times because there is an important fact which is ....everything becomes easier with time and the more we practice something,the ore we do it without thinking of it.
The most difficult one had passed and now we should be thinking of ''ways'' to normalize things for her. One of the thiings that help is to act normal and avoid showing that she is supposed to do a ''a big'' thing in addition to giving love and confiedence. Giving her her doll and telling her to start giving her transfusions and teachig her to tell her doll that this is important to her will make these words familiar to her later on. This way has helped a lot of children to cope.
Anyway, i am happy that she feels better now and that she looks great and one more thing you are a wonderful parent
manal
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Thank you Manal for your post.
Hmm,...you have given me good advice. I will try it with my daughter. She seemed very interested in giving her doll a needle. Maybe if we play act the whole transfusion process it will become something we get used to.
In the days since the transfusion, I have to say she looks good. She is full of energy.
Alexia
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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.
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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.
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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
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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.
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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.
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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
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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
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Thank you Sharmin for your post, you always have your magical way ease things :hugfriend. Personally you have helped me a lot in dealing with my son. You always know where the problem lies :clap
manal
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Thank you Manal :hugfriend :hugfriend,
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
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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.
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Alexia,
I hope and i am sure this will get better :hugfriend 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 :hugfriend .
Zaini.
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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! :hugfriend
Sharmin
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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
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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
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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
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Alexia,
Congrats for going through the 1st time successfully... :hugfriend
What Sharmin's said is correct. She just needs to express her feelings...I think it's normal, and it'll get better in time.
I remember running around the hospital lab/hallway/i-dont-know-what areas when they were trying to poke me (I hadn't had any transfusion, but there were blood tests, vaccination, etc). The fact that I wasn't athletic, didn't know the war field better, 6 year old, and being chased by 4 grown ups made me always get caught. The rest was the same story as your kid's. :)
Please be patient & don't get mad at her...she'll learn through experience that extra fight, scream, and cry will eventually end up the same. A thing she has to deal with, whether she likes it or not. And it's gonna be easier when the acceptance comes from herself.
For me, books & portable games helped during the waiting time. Or a treat (some delicious junk food) if I didn't cry...which I hardly ever get...(makes me wonder if mom was just teasing me).
Love,
Nat
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Nat thank you for your words - you even made me laugh.
Yesterday was the 6th transfusion for my daughter. The day before we visited the hospital to do some roll-playing. We gave a doll a needle and started a pertend transfusion. We even developed a plan of action for the transfusion day. My daughter agreed not to have mommy and daddy in the room when she got the needle. (Sometimes kids can maintain better control when the parents are not there. ) Of course when the actual day came she changed her mind. This time daddy sat beside her and I was near her bed trying to distract her with a book. It took two nurses, a child care specialist and daddy to keep her down. In the end, she screamed that she hated everyone - before it was just me she hated! The rage was still there, but it was just a little bit better and less intence. So I hope that means we are making progress.
Unfortuntely, something is affecting her hemaglobin levels, it has dropped to 56 (normal I was told is 115 to 150) though I am trying to figure out what this means against figures posted by others. We are not transfusing her in one weeks time to see if we can elevate her hemaglobin level.
Alexia
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Glad I can help.
Yea, it seems so...the fight seems to lessen.
Is she still alone in the room? Maybe if she gets a room mate who's also getting transfusion she can see that she's not that alone...and if her friend doesn't cry, she might pull herself as well. ;)
Wow...what happened? Was she sick or something? What the doctor said?
I hope she's okay...
Nat
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The nurses and the child specialist at the hospital have helped my daughter cope with each transfusion. She has been in a room with other adults and children so she can see she is not the only one. That has helped somewhat, and also practising on her dolls and teddy bears. All her stuffed animals have received needle pokes and tranfustions. ( Do you know how hard it is to remove sticky tape from fur? LOL Have to have some humour to cope with life)
Anyways, as I mentionned my daugheter's hemaglobin has dropped significanlty. We have done three transfusions in less then a week and are scheduled for another one in two days. The doctors assure me the blood is cross-matched and they are not finding any anti-bodies in her. Her body is attacking her own RBC and the ones from the transfusion. They are searching for a reasone, but the most they can tell me is that is may be viral. We are hoping the more frequent transfusions will raise her Hb levels. this tuesday she went down to 61. The funny thing is with all these extra transfusions and frequent hospital visits she is becoming an old pro at needle pokes. She still cries, but she stays still and she even removed the bandages and needle at the end.
I am praying that this is a temporary set back in her treatment. I had seen much improvement in her wth the start of transfusions. I want those red checks back and a happy vibrant child. For now I am a very stressed and worried mom.
Alexia
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Alexia,
This sounds like autoimmune hemolytic anemia. Sometimes it resolves itself, other times further treatment is required. Please keep us posted.
Sharmin
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Fifth disease or parvovirus B19 should be investigated if the cause is possibly viral. This can cause a sudden hemolysis in thals.
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Hey Alexia,
I hope those doctors will know soon what is causing this!! So please keep us up to date.
It has always helped me to be with others during transfusion. I am more afraid of a bleeping pump than sitting there alone though. However, diabetics have such a spray they use to get the bandage/plaster easily coming off. In case she find that too a problem you may ask for that too.
Does she get salve to numb her skin?
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I love this forum - everyone's messages and suggestions help me. THANK YOU ALL!
We were are the hospital again today, the 9th transfusion, the 4th in 2 week period. Her Hb is 72, up from 61 so that is positive, but we need to get her to high 90's. Normal is 115 to 150 for a 6 year old. We have another tranfusion scheduled for next Tuesday and a follow-up for Friday. Right now treatment is very intense because her body is attacking her own red blood cells and the transfusion ones. They can not find anything, but hope it is viral and will pass. ( Thanks Andy for the information, I think they checked for parovirus and didn't find anything so far.) If by Tuesday she is not going up, they are going to put her on steriods to dampen her immune system to hopefully stop the turn over of the red blood cells. I am worried but I need to have faith in the process. The rest is in God's hands. Is this a standard response. Has anyone had this happen to them?
Dori you should have seen my daughter today. She cried briefly and barely flinched when they gave her the needle. The past 2 wks have been stressful with the frequent needle pokes, but they have served to desensitize her alot. They don't use the salve anymore and they finally found a bandage that does not irratate her. It still hurts to take it off, but everyone has realized my daughter likes to be in control. She takes off he own bandage.!
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Yes Alexia, this is the standard protocol for this but the more important thing is that she must have a fully matched blood in order to avoid making antibodies in her system that in turn will destroy the transfused blood
Manal
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Please check this link
http://www.thalassemiapatientsandfriends.com/index.php/topic,2231.0/highlight,antibodies.html
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Thanks Manal for the resource. I am reading and trying to understand.
The doctors did find some anti-bodies and are sending the blood to another lab for a better cross-match.
This 2 times a week transfusions is exhausting for all of us, for my child, it is disruptive to school, for me and my husband for work and for our other child who is just taken along for the ride. This is a very difficult period for all of us, both emotionally and physically exhausting.
Alexia
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Alexia
I am sorry to hear this but I hope things will be much better the coming days. I am sure you know that life has it's ups and downs and definitely all will pass. Be strong, you are doing an excellent job. Please keep updating :hugfriend
Manal
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Alexia,
This is a difficult situation, my heart goes out to you. We faced the same situation with my son because he also developed an antibody. The unpredictable hemoglobin levels can be scary and the multiple hospital visits can be physically and mentally tiring.
Have the doctors done Coombs tests etc to analyze the antibody? Does she have antibodies against antigens in foreign blood - or is it an autoantibody? Allo antibodies are much easier to deal with, more extensive cross matching is likely to take care of the problem. I suspect that your daughter has auto antibodies causing autoimmune hemolytic anemia. This can be a little more complicated - but it CAN be dealt with. My son also had AIHA and we have been able to take steps to alleviate the problem. In most cases this type of antibody does disappear over time. Sometimes an acute dose of prednisone will wipe it out. If that does not help there are other avenues you may choose.
Please be assured that as difficult as it seems now, this will get better. Please let me know if there is anything that I can do to help as I have been in your shoes. If you like you can PM me and I can send you my phone number if you it helps you to talk to someone.
:hugfriend :hugfriend
Sharmin
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Since then there has not been a post from Alexia. Did you talk to her over phone, Sharmin? I hope all is a bit well because I am a little worried now. Thinking of your daughter & family.
-Dori
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Dore,
I haven't heard from the family yet, but I hope all is well. Perhaps they are busy managing her frequent transfusion regimine. Having an additional complication can be very mentally and physically challenging.
As positive and mentally strong as we were when lil A was on a 'normal' transfusion schedule we has brief moments of facing the brink of breaking during those times. It was very helpful for us to have this group during those times. We feel that we are strong and positive - but we has moments where we had to search for that strength and lucky for us we found that strength in us and through the help of this site, our friends and research on how to get through these situations. I've posted about that those techniques which must be mastered internally from ones own heart and soul. I hope they're helpful to everyone.
I hope to hear from this family soon and I hope that our experience helps others in similar situations.