Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: BabyI on January 18, 2013, 02:01:49 AM
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Hello everyone,
Tommorrow I have to transfuse BabyI. I am a big worried. Don't know if this is best to do now. BabyI has been cranky lately, eating with difficulty because of fussiness, and didnt sleep well. I have seen improvement in her sleep and maybe somewhat in her eating (eats better when half asleep, but not as much as I would like). See in our last doc visit her hg was in the 8 and the nurse didn't do her weight very well (left blanket on the scale and said she deducted the weight). I feel she was off. Now this visit her weifht was 14.7 compared to 14.5 the last time. So I am not sure if BabyI didn't grow much or it was an inaccurate reading. Also the hg we did from heel stick said she was 6.8. When we redid it, this time from vein, it said she is 7.5. Lastly, they did phenotyping and determined her nucleated rbc were at 36 (said normal is 0).
So you see I am trying to figure out if I should continue with transfusion or wait. On the one hand I'm worried she isn't feeding well and may not be developing in this crucial time and thing it's safer to transfuse. On the other hand, I don't want to rush this as it can have its own set of consequences (iron overload, dependence, etc.)
BabyI is 5 months. She doesn't really play much because she's mostly cranky. My heart hurts for her either way. I feel transfusion is my only option especially for her brain development. I miss giving her normal feelings. Usually she'll taje some and then start crying pushing away even though she is hungry and I have milk.
Any thoughts would be appreciated. The first transfusion may be tough especially with needle poking (went through that once with phenotyping). I pray everything goes well for her.
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I don't think you should hesitate to transfuse. Iron overload should no longer be a consideration on when to transfuse, as the advent of oral chelators has made it much easier to manage iron load. Your description of your baby tells me it is obvious that this child will be much happier and grow normally by beginning transfusions. A couple days after the transfusion, you will see the difference. You can't rely solely on Hb level. Observation of the patient is key to determining when to start transfusions. There is no advantage to delay.
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Hi momma of BabyI. PrincessM is just one month younger than BabyI. She is starting to exhibit most of the behaviors you are describing of your little one. It's a consistent battle to feed her, and at night she is up every hour to 90 mins because she's trying to make up for the feeds. It's an exhausting and draining situation so I definitely can sympathise with you.
With that being said please don't hesitate to transfuse. When I go to her hemo appts each month I see other kids there a bit older than her who transfuse and are having a ball playing. I know your little one's case will be the same. Our baby is on track to start transfusing soon, and although I know it will be scary initially I try to think of all the good it will do her.
Good luck and be strong... Will be praying for you... Update us afterwards <3
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Oh and I also wanted to say, do not let just anyone poke your child. Ask for a phlebotomist, one who isn't fresh out of school, and has poked at least a few dozen babies under 6 months. Ask them these questions when they're in front of you. I'm not trying to knock anyone. I work in the healthcare industry so just wanted to reiterate that you have rights and they must respect your wishes. After all, no one can beat mothers instinct :)
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Thank you both for the encouragement. It helps a lot. When I was there one of the ladies that does needles only told me to ask them to get a stat nurse because since it was hard for them to get her blood it would be very hard for the transfusion nurses to do so. Is that what your referring to? The phelobotomist said they weren't allowed to go to that area only nurses can and the stat nurses do needles. So I made sure that's who does the needle. I hope they don't bring a trainee as I see how they try to do that. On one other visit they did that and I get so aggravated. Cause I didn't even know it was a trainee and they don't say anything to you. That happened at the excellence center. She messed up and spilled blood. I was very upset but didn't know what to do.
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And sorry to hear about your PrincessM. That's how I am with the feelings as well except I don't feel she eats enough even then. I can't wait until I can feed her without struggle. During the day it's very difficult. I thought maybe it was a baby stage but I guess not. I'll keep you posted on how things go. I am thankful she has this opportunity to be transfused as many don't unfortunately. But I know it's still difficult to see your baby going through it. I pray it goes very easy for her.
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When I hear things like this, it makes me quite aggravated. When I was in school I was REQUIRED at all times to state that I was in training. Years later, I train students now and that's the first conversation we have - introducing yourself. I find it interesting that phlebotomists are not allowed in transfusion areas (especially since you're at an excellence center). Nevertheless, yes please ask for a stat nurse; and this time be very clear and firm that you are not OK with a trainee or new grad poking your baby. If they give you a hard time or act stubborn about it; ask for a patient advocate. Your child's comfort depends on your emotional state; you'll be more relaxed if you can trust your healthcare team. I've treated pediatric cancer patients and the most important thing I learned was relaxed and happy parents=cooperative baby=smooth treatments. Ask for whatever you need to help you get through it :)
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I can feel you about the pokes/needles. When I was small, even when my veins were seen sharp even with a closed eye and doctors failed, my mother and father used to get angry after the same incident being repeated several times. Then they abandoned that hospital and started transfusing me at my father's company's hospital. There were excellent doctors there who didn't used to poke me more than any once. Since then, I still get transfused there under the guidance of "same doctors" that used to transfuse me while I was young (baby). Now we are such that we've good relations and that they also come to our home once in a while as relatives.
Don't worry, things would get easier. If you find that hospital is not proper, it would be advisable to change or just be at another one the next time you transfuse and see where your child feels comfortable. :)
-P.
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Hello everyone,
Today was the day and I am pleasantly happily that all went very well. I really didn't expect that and was prepared for the worse. What made it much easier for me was my doctor accommodated us very well. Where I get transfusion done is at our local hospital (I go to excellence once in a while for check ups). They have us a separate room since she is so small and I breastfeed her which helped a lot. I brought her own blanket, wraps and toys so she is comfortable and familiar with some surroundings. I was worried about the poking but because my doc let them know ahead of time that a pediatric stat nurse must do it only it went very smoothly. She did one poke, has to move needle around a little to get the vein and finally got it. I was so happy that she didn't have to suffer multiple pokes like she did when her blood was drawn. The lady wraped her hand and arm and I wraped my BabyI to sooth her and to keep her from moving her arm and accidentally pulling anything (didnt want her to go through any of it again). We were there at 12:30 and it took 2 hours for the blood to get started. This was unexpected but they said its a busy day. I was done at 6:20. BabyI did very well. I was happy about that. Ofcourse she was at times fussy but the pacifier helped. And she slept some. You know at times I would feel like this is ok. It's fine and we can do this. And seldomly I would feel overwhelmed that my baby is in need of blood and is laying there getting an IV. But I got over it and thanked God for all the blessings. I am so thankful she didn't get any negative reactions. It was hard preparing for this day but once you get there and everything is going smoothly, you adopt a positive attitude and be grateful she is able to get treatment and it such good circumstances. It may take me a few more times to get used to this and not let it affect me but I am happy that I could handle this in a positive way. Thanks to this forum and reading the stories, I was better able to deal with the situation. I hope my story gives someone else hope as well. I asked the nurse there what all the other patients were in there for; some for leukemia, sickle cell, cancer, and other ailments. Young and old were there and he said there was one other thalassimia patient that comes there every month, she was a girl when started and now is one of the doctors working there still coming for transfusion. Just goes to show how grateful we should be and how our kids have a bright future. One thing I wanted to point out that I think Sharmin mentioned in one of the posts; keep a positive attitude and make it a good day for your child because they feed off of you. Even my other older children can sense things. This helped alot because it was a day of happiness that she is getting treatment and with God's will can then get better.
BabyI's mom
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Hello everyone,
Today was the day and I am pleasantly happily that all went very well. I really didn't expect that and was prepared for the worse. What made it much easier for me was my doctor accommodated us very well. Where I get transfusion done is at our local hospital (I go to excellence once in a while for check ups). They have us a separate room since she is so small and I breastfeed her which helped a lot. I brought her own blanket, wraps and toys so she is comfortable and familiar with some surroundings. I was worried about the poking but because my doc let them know ahead of time that a pediatric stat nurse must do it only it went very smoothly. She did one poke, has to move needle around a little to get the vein and finally got it. I was so happy that she didn't have to suffer multiple pokes like she did when her blood was drawn. The lady wraped her hand and arm and I wraped my BabyI to sooth her and to keep her from moving her arm and accidentally pulling anything (didnt want her to go through any of it again). We were there at 12:30 and it took 2 hours for the blood to get started. This was unexpected but they said its a busy day. I was done at 6:20. BabyI did very well. I was happy about that. Ofcourse she was at times fussy but the pacifier helped. And she slept some. You know at times I would feel like this is ok. It's fine and we can do this. And seldomly I would feel overwhelmed that my baby is in need of blood and is laying there getting an IV. But I got over it and thanked God for all the blessings. I am so thankful she didn't get any negative reactions. It was hard preparing for this day but once you get there and everything is going smoothly, you adopt a positive attitude and be grateful she is able to get treatment and it such good circumstances. It may take me a few more times to get used to this and not let it affect me but I am happy that I could handle this in a positive way. Thanks to this forum and reading the stories, I was better able to deal with the situation. I hope my story gives someone else hope as well. I asked the nurse there what all the other patients were in there for; some for leukemia, sickle cell, cancer, and other ailments. Young and old were there and he said there was one other thalassimia patient that comes there every month, she was a girl when started and now is one of the doctors working there still coming for transfusion. Just goes to show how grateful we should be and how our kids have a bright future. One thing I wanted to point out that I think Sharmin mentioned in one of the posts; keep a positive attitude and make it a good day for your child because they feed off of you. Even my other older children can sense things. This helped alot because it was a day of happiness that she is getting treatment and with God's will can then get better.
BabyI's mom
Congratulations, nice to see that all went well. :) :biggrin
Love to Baby I,
-P.
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Very happy to hear about BabyI's 1st transfusion going smoothly and momma being so brave :) thanks for the details so we know what to expect when we cross that bridge.
PrincessM's Mama
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Thank you for sharing. We are sooo worried about beginning transfusions so early in life and how the process will work for an 8 month old. I cant even imagine him sitting still for more than 5 minutes. He is soooo active. No pacifier here Im sure a bottle will help for a bit but..... Thanks to everyone on this board for all the support they give.
Sooooooo glad Baby I's first trasfusion went well. Warm wishes!
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I am so glad that BabyI's transfusion went well!
You went in with a great attitude - BabyI I very lucky.
Just know that in the early years there may be some tough starts
(but maybe it will always be easy). Just remember, if things derail you can
recompose yourself and the rest of the day will be good.
Never let one or two bad moments rule the entire day.
So proud of you and BabyI!!
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Thank you everyone for the kind words. It does get a big getting used to and a lot of positive thinking. Even though I never liked pacifiers, I do feel it can make a huge difference when the time comes. Else she would have been crying and I wouldn't have been able to console her. Just wanted to mention that incase it helps anyone else. It's so strange getting to this point. I imagined it happening later on when she is older. I think I was a bit in denial, a bit lost as to whether it was truly necessary and a bit loss as to whether the symptoms she was exhibiting were from her hg count or just normal baby behavior. I guess when I look back, the symptoms were there but I was trying to pretend they weren't and that it was too soon. Even though we know she has this and transfusions are in her future, you still want to delay it thinking its not really that necessary and shell be fine without it (denial ofcourse). Some of you may feel the same. I think I called my doctors too many times before the transfusion just to make sure it was necessary and I was doing the right thing. But I later realized that I may be hurting her development and that was enough for me to move forward. It's tough but it's for the best. I pray it's easy for all. It's life. Things happen for a reason and the good that comes out of it we may not understand but there is good in it. One day we will see that.
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It's been four weeks now since the transfusion. Problem is how do I know when to transfuse again??? Her hemaglobin was 10 at two weeks after transfusion. But I notice she is increasingly cranky at around 3 weeks. But I'm not sure if its baby stuff or thal related. Now at 4 weeks she is increasing the crankiness and today hardly slept. I think doctor should have checked hemaglobin at 3 week as well. I am a bit confused. Are we suppose to go by hemaglobin numbers only to transfuse next? I mean I don't know if she is teething, having a bad day or needs a transfusion. It's so hard trying to figure it out. And aren't we suppose to transfuse BEFORE she reaches the crankiness stage??? I'm a bit lost. Please advise. Thanks!
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It's been four weeks now since the transfusion. Problem is how do I know when to transfuse again??? Her hemaglobin was 10 at two weeks after transfusion. But I notice she is increasingly cranky at around 3 weeks. But I'm not sure if its baby stuff or thal related. Now at 4 weeks she is increasing the crankiness and today hardly slept. I think doctor should have checked hemaglobin at 3 week as well. I am a bit confused. Are we suppose to go by hemaglobin numbers only to transfuse next? I mean I don't know if she is teething, having a bad day or needs a transfusion. It's so hard trying to figure it out. And aren't we suppose to transfuse BEFORE she reaches the crankiness stage??? I'm a bit lost. Please advise. Thanks!
I definitely think it's her transfusion time. When I was young, my parents used to check the redness of blood vessels deep under in my eyes and from that they knew that now it's time to transfuse. Also from the lips. Now, it's a standard routine for me, 3 weeks - 500 CC blood.
And teething is definitely one of the symptoms, when my Hb is low even today (as in whenever) I feel like crushing my teeth or holding them tight and it turns out in low Hb. Never let your child's Hb go down below 9, or keeping above 9.5 or 10 is best!
-P.
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I went to have her checked today. It was 9.5. She said we can transfuse next week if I wanted. She said 9.5 is fine. What do you think???
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when we started the Tx for our daughter, we went every 4 weeks (we still do)...the goal was to keep Hg above 9.5 ...some try to keep it above 10.0. you don't want her Hg to fall too low. Too low Hgb stresses the body and also affects the quality of life. So, may be schedule every 4 weeks Tx and see how Hgb is doing after few months and then adjust her Tx schedule. it becomes a routine afterwards...
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My doctor said wait until its 8. Is that too low?
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Oh I just read this thread after the other one about our babies. I will tell you that being thal minor and during my 20s my hemoglobin has ranged from 10-10.5; and for mostly this last decade I have felt weak/low/tired 24/7. I just push through it and never let it hold me back but my point is; babies' bodies and minds are developing at exponential rates; I think when princessM starts transfusing I wouldn't let it fall below 10 either as Bostonian said.
PrincessM's Mama
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Hb should not be allowed to drop below the 9-9.5 range.
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Hb should not be allowed to drop below the 9-9.5 range.
I agree. As we were discussing pain issues a couple of days ago. Tomorrow, my tx is scheduled and I'm having bad pain in back, head, my jaws and the Hb is 9 as of today, so even 9 is now very low for me. I try to keep my pre tx Hb above at least 9.5 since couple of months.
So definitely, keep your child's Hb above 9.5 and keep chelating!
-P.
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Pratik is correct. There is absolutely no advantage to waiting for transfusions. Any doctor following a different routine is not keeping up with advancements in treatment.
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Thanks for the responses. Then I'll tell my doctor to do the transfusion because she said she will do it if my baby isn't well. I don't chelate yet since she is 6 months. One question, are there benefits or risks to waiting too long before transfusion? I mean if I extend it will my baby be negatively affected? If so then I would do Tx on e she reaches 9.5.
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Hello everyone,
So far my baby has been transfused 3 times. All went fairly well and she was poked one time only. Well this last time went terrible. She was poked 5 times and although they got the vein, it burst and wasn't useful. It was difficult to see especially the last poke. They got her on her hands, arms and feet. It was disturbing to see but you stay strong and try to distract the baby. After the 5th poke I called it off and said I'll be back tomm. The nurses agreed. They had pediatric stat nurses to do the pokes. But like I said they got the vein but it burst. They even got an ultrasound after 3 pokes. I'm going tommorrow and praying it goes well. Seeing her go through it is heartbreaking. But I thank God that we have it better than many so I should never complain. The nurses kept asking if I considered a port. I don't want to see that in her. Besides infection and blood clot, it's a mental issue. With transfusions you go that day and you leave and live your life normally. Seeing a port in you makes you think about it all the time. I wish they would stop suggesting it as if I am the one making her go through this. How do I politely tell them to stop suggesting it? Is there anything I can do to help her veins from popping (if that's at all possible)???
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Hi there, I have been through the same situation. The hospitals always want the port because it is easier for them. You are right in saying no...besides infection it is totally not neccesary. After the transfusion you go home and that is it till next time.
My daughter is almost 3 and has been going for transfusions every 3 weeks since she was 6 months old. The beginning was the worst because they couldnt find a vein...now its one shot. We started requesting an IV team and have been lucky to get the same person each time. Hang in there and please know you are never alone!
James
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YES stand by your decision! If u do not want a port, don't let them talk u into it. My 3.5,year old got up to 12 pokes at his 4 month transfusion. They even tried to poke him in the head. The first 6-9 months were really horrible but the good thing is that they won't remember. My doc even told me that I was torturing him. I mean, u may have to consider it if they r older and finding a vein is impossible...but that's only if u WANT to. I hate to see simply no ports because y docs all have different opinions and every child is different. Your little one is a baby and this is very normal.
My oldest was poked and prodded until we found an amazing nurse. My youngest was lucky to have her...he didn't go through even half of what the other did. Now they both get lucky with in 3 tries for the most part. I am dreading the end of the year though...she goes on maternity!!!!
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Hi,
I remember someone told me that hydration helps. Its easier to find a vein in a well hydrated baby.
All the best.
Zahra
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Zahra is absolutely correct. Start hydrating your baby very well after dinner time the night before. This may mean more diaper changes during the night but it's better than blown veins.