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breastfeeding??????

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13 years 7 months ago #16383 by bobbi2782
breastfeeding?????? was created by bobbi2782
CAn you breastfeed with ITP?

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13 years 7 months ago #16405 by rmuttech
Replied by rmuttech on topic Re: breastfeeding??????
Yes, I did. My daughter actually had low platelets at birth. She received IVIg in the hospital before coming home, and her platelets normalized and never had problems afterward. I breastfed for a year.

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13 years 7 months ago #16672 by gsh
Replied by gsh on topic Re: breastfeeding??????
yes. I was diagnosed when my baby was 8.5 months old and we continued to breastfeed to 15 months. I had IVIg, prednisone and decadron. I consulted with a specialist on these drugs and it was okay. If I recall, IVIg molecules are too large to pass into breastmilk. Prednisone is okay short term. Decadron was a bit worrisome so I fed her over 3 hours after taking it. Benadryl is not okay. check out this website:

www.infantrisk.com/

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13 years 7 months ago #16674 by gsh
Replied by gsh on topic Re: breastfeeding??????
also I was told that the anti-platelet antibodies are found in the first milk (colostrum) but not after that so you would not be passing those on to the baby otherwise (only at birth if it happens).

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13 years 7 months ago #16677 by tigereyes
Replied by tigereyes on topic Re: breastfeeding??????
I tried. When my milk came in the blood vessels in my breast tissue popped. So I was pumping blood for the first oz or so then the milk afterward. The pedi and hema both told me it was safe for the baby to drink--it actually happens to women who dont have ITP and the only reason I knew is becasue I was pumping. So dont be alarmed if you see blood.

It only lasted for a few days.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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13 years 4 months ago #18970 by cloyd915
Replied by cloyd915 on topic Re: breastfeeding??????
my son is 5 months now and we have both been dealing with low platelets. I developed ITP in my 5th month of pregnancy. I have been nursing him right along. When my platelets are higher, his are good but when mine drop his seem to as well... He has not had any treatment. I get IVIg every week. I can't help but wonder about a connection but I've been assured there is no contraindication for nursing. Good luck!

Diagnosed with ITP 2/7/11
Treating regularly with IVIg
Currently in the low 100's

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13 years 2 months ago - 13 years 2 months ago #19907 by jess24
Replied by jess24 on topic Re: breastfeeding??????
I'm certainly no expert, but it seems that what I have been told is quite different to the other people who have posted on here. I thought that I should write what I was told, so that way you can check it out further from an expert.

I had a lot of complications during my pregnancy, which meant that I couldn't breastfeed. It wasn't until 6 weeks after I had my daughter that I got ITP. She had to have a bloodtest to check to see if she had ITP also. Apparently babies can get it if you are breastfeeding and I did for the first 6 days, so we checked, just in case I had ITP then but didn't know. Thankfully she doesn't have it and doesn't have to have any more blood tests. My hematologist said that if I were breastfeeding she would definately share it with me.

I might be a bit of a sook, but holding my little girl while she had the blood test was the worst thing in the world. She screamed and screamed and it took ages for them to get enough blood. My platelet levels have been up and down and trying to manage it is difficult. I just think that if my daughter had to have the same amount of needles and all the things that I do, it would be horrible. Personally I don't think that I would take the chance.

My hematologist also said that your baby only shares your immune system for the first 6 months, so I suppose if you can hold out for that long, or if your levels stay high during that time, I guess it wouldn't be a problem. Maybe its just worse for me because I've only been newly diagnosed. Again, I'm not an expert, but this is just what I've been told.

Good luck with your decision :) I hope that everything works out well and that hopefully I'm wrong!

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13 years 2 months ago #19915 by gsh
Replied by gsh on topic Re: breastfeeding??????
my ITP came when my first was 8.5 months. It was in remission while pregnant with my second. She is now 10 months and she didn't have any platelet issues. I breastfed both - the first was older but my platelets were rock bottom at times.

I always understood that the anti-bodies could pass in the first milk (the first few days) only and not after that. It's hard to know I guess considering a major part of breastfeeding is to pass on immmunity to things. I was never told not to breastfeed because of ITP.

With my first we quit at 15months because my ITP was really bad and I needed sleep and healing. I felt that getting my hormones back to normal might help with the autoimmunity. Do what feels right for you and most of all, focus on getting yourself better whatever that takes. All the best.

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13 years 2 months ago #20441 by charlottem005
Replied by charlottem005 on topic Re: breastfeeding??????
I was diagnosed with ITP prior to getting pregnant about 2 months...I stabalized after one treatment of Prednisone so felt safe to try for a baby. I was fine throughout my whole pregnancy and began breastfeeding after. My platelets dropped about 6 weeks after having my son and was put on Prednisone. I continued to breastfeed though my doctor thought I should stop, she thought it may have messed with my hormones and that's why I couldn't get a positive outcome of the Prednisone as I had before. I continued to breastfeed until he was a year old and stopped in hopes it would change my situation with ITP. It did not. I continued having back to back occuring low platelet counts up until recently (my son is now 2). My theory is breastfeeding had no effect on my platelets and my son was luckily born normal with no issues and though I was on Prednisone while breastfeeding it did not seem to have any negative effects on him. SO, I would say if you want to breastfeed go for it!:P

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13 years 1 month ago #20505 by cpo5
Replied by cpo5 on topic Re: breastfeeding??????

tigereyes wrote: I tried. When my milk came in the blood vessels in my breast tissue popped. So I was pumping blood for the first oz or so then the milk afterward. The pedi and hema both told me it was safe for the baby to drink--it actually happens to women who dont have ITP and the only reason I knew is becasue I was pumping. So dont be alarmed if you see blood.

It only lasted for a few days.


True. I do not have ITP and I,too, pumped blood for awhile. Freaked me out. My son who is 9 years old has ITP. I have a daughter who is 1, so I found this post interesting. :)

This is the stuff that drives me crazy
This is the stuff that's getting to me lately
In the middle of my littleness
I forget how big I am blessed
This is the stuff that gets under my skin
But I gotta trust You know exactly what you're doing
It might not be what I would choose
But this is the stuff...

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12 years 2 weeks ago #30524 by lunanox
Replied by lunanox on topic breastfeeding??????
Hi guys,

I'm 20 weeks pregnant and this is something that I've been wondering. Our disease is auto-immune...breastfeeding lets your baby get antibodies from your milk. Doctors don't seem to know very much about ITP, they have no certainty on how we got it, no certainty on what treatments will actually work on us nor no certainty on what will make it go away. What proof do we have that breastfeeding with this type of disease is safe? They could say it's safe...but what (if any) studies are there to back it up? I've noticed with dealing with this disease that nothing is certain...what one doctor says one other doctor will contradict. I have very little faith in them if they can't show me proof. A lot of doctors want a compliant patient that accepts any answer that they can give to them. Here is my question...anybody know of actual studies that were done on ITP or broader auto-immune diseases in relation to breastfeeding (short term and long term)?

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10 years 11 months ago #39955 by tigereyes
Replied by tigereyes on topic breastfeeding??????
ITP is not passed on. I have been bf my 16 month old son. He's is perfectly healthy.

Jennifer

Mother of 2 boys
Last Rituxan 12/09/09--3rd time around with not much sucess
Winrho-09/25/09 Didnt work.
IVIG--Countless times

Latest counts 8 4/2013-just started Promatca
Diag. 9/2006

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9 years 4 months ago - 9 years 4 months ago #51478 by marlen.rod
Replied by marlen.rod on topic breastfeeding??????
I feel the exact same way as you lunanox.. the docs are figuring ITP out as we are experiencing it as patients.. I just had a baby 4 days ago and while she was born with perfect platelets, at the 48 hour check up her counts already went down by 100k. Pediatrician said we will check again in a few days and see what they do, but it may be caused by antibodies in my breastmilk. So I went on a research spree and found this recent article today... Not very good news for my goals of only breastfeeding:(
www.ncbi.nlm.nih.gov/pubmed/26077397

anybody want to give me some hope??

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9 years 2 months ago #52162 by Hannahbee
Replied by Hannahbee on topic breastfeeding??????
I had no idea about such a correlation between breastfeeding and ITP in babies. I breastfed my son until 18 months and he's perfectly fine x

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  • Zeka
  • Offline
  • 33 yo with counts 45k-160k on 75mg Promacta. Recent splenectomy.
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4 years 1 month ago #70410 by Zeka
Replied by Zeka on topic breastfeeding??????
Just doing some research on this myself and wanted to update in case others are reading this in the future. The current science indicates that while yes, nursing mothers with ITP do pass antibodies to their infants which can reduce their platelet counts it does not lead to immune thrombocytopenia in the baby long-term. Platelet counts should return to normal once breastfeeding is discontinued.

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