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

Alexia,

Congrats for going through the 1st time successfully... 

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

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

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

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

Alexia,

This sounds like autoimmune hemolytic anemia.   Sometimes it resolves itself, other times further treatment is required.  Please keep us posted. 

Sharmin

Fifth disease or parvovirus B19  should be investigated if the cause is possibly viral. This can cause a sudden hemolysis in thals.

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?

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.!

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

Please check this link
http://www.thalassemiapatientsandfriends.com/index.php/topic,2231.0/highlight,antibodies.html

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

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   
Manal

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. 
 

Sharmin

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

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.