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TOPIC: He's here - but with low platelets

He's here - but with low platelets 3 years 9 months ago #50579

  • Katsim
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Luke arrived last Wednesday at 9.56, weighing 8lbs 8oz. He's a bundle of gorgeous!!! We're all totally smitten by him :) He's only 7 days old and we're all wrapped around his little finger!! His big sister sings him a lullaby every night & I can't get enough cuddles with my lovely little man!

Sadly - he does have some platelet issues. The Wednesday he was born his count was 92, the day after 98, Friday 91. He had a head scan to check for internal bleeding & all was well so we were discharged.

On Tuesday he had a repeat blood test & his count was 37. He's had an ivig infusion today & I'm just waiting around to find out his count 6 hours after it finished. I'm so upset by it all. He screams during the blood tests & is too tiny for all of this :(

Everyone I ask says that itp antibodies cannot pass through breast milk. But the post by sandi suggests otherwise. I don't know what to do for the best. I decided to post here in case any pearls of wisdom emerge that help others in the future with babies with lower counts.

I'm so tired & feel like I've lost all perspective. Do I just go with the drs & keep repeating ivig if he needs it? Or do I give up breastfeeding in the hope that it helps stabilise him? Or, if the ivig worked, do I ride it out for a couple of weeks & see if the counts drop again - and if they do, give up bf then? After all, he's already had the ivig now :(

Any thoughts??? I'd really appreciate any opinions - like I say - I've lost all my confidence over here. It seems that making hard decisions for myself is easy- but I'm second guessing myself when it comes to him - I'm so scared of choosing wrong :(
Lowest count 1. Highest count 207 (ivig) Indium scan showed predominantly splenic destruction. No meds currently, just seeing how things go.

"Life isn't about waiting for the storm to pass - it's about learning to dance in the rain".

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He's here - but with low platelets 3 years 9 months ago #50580

  • alisonp
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Kat, I have no answers but I just wanted to send you and your family huge congratulations on Luke's birth - great news :-)
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He's here - but with low platelets 3 years 9 months ago #50586

  • TerriC14
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Congratulations on the birth of your son.

No advice, in my career the only cases of neonatal ITP that I have seen the moms' counts have been normal and the infants' counts resolved quickly. I hope his counts rise and stay up!
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He's here - but with low platelets 3 years 9 months ago #50601

  • Katsim
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His day 7 count (6 hrs after ivig stopped) was 69. So at least we're headed in the right direction :)

Interestingly terri, my count is 153. It was in the 30's before I was pregnant & usually between 50-100 when I was expecting. So mine is going up.

Of course I'd much rather mine was low & I could have the treatment instead of my little baby - but that's every parents thought about any child treatment I suppose.
Lowest count 1. Highest count 207 (ivig) Indium scan showed predominantly splenic destruction. No meds currently, just seeing how things go.

"Life isn't about waiting for the storm to pass - it's about learning to dance in the rain".

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He's here - but with low platelets 3 years 9 months ago #50626

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Kat, can you just pump until he is stabilized? Those two articles seem convincing. Supposedly, it should only take a few weeks for the antibodies to leave the baby after birth, so hopefully that happens soon.

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He's here - but with low platelets 3 years 9 months ago #50636

  • Ann
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Congrats on the birth. I would breastfeed as long as possible, every extra day you feed is good for the baby. You may have to stop eventually but you'll have given it your best shot.

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He's here - but with low platelets 3 years 9 months ago #50789

  • Katsim
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His count today is 22 :(

I will be stopping bf as this is just getting too low for comfort & sandi - you're right - those articles are pretty convincing.

The consultant doesn't want to treat this time at 22 - he wants another test in a weeks time. That feels too long for me. Luke's count was 82 just 5 days ago. This consultant is a specialist in paediatric itp.

Any thoughts on waiting that long for another test??
Lowest count 1. Highest count 207 (ivig) Indium scan showed predominantly splenic destruction. No meds currently, just seeing how things go.

"Life isn't about waiting for the storm to pass - it's about learning to dance in the rain".

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He's here - but with low platelets 3 years 9 months ago #50791

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I'm sorry, Kat. I really hope it resolves soon. As for having the count done in a week...tough call.

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He's here - but with low platelets 3 years 9 months ago #50877

  • Katsim
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Hubby took the decision out if my hands & rang to demand another test. We were worried that the numbers might keep dropping.

His count on weds was 51. Hoping for an upwards trend!

This is exhausting!

But, he is doing well in himself & is pretty settled. He's sleeping fairly well & my little girl just loves being a big sister!! Family life is good :laugh:
Lowest count 1. Highest count 207 (ivig) Indium scan showed predominantly splenic destruction. No meds currently, just seeing how things go.

"Life isn't about waiting for the storm to pass - it's about learning to dance in the rain".

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He's here - but with low platelets 3 years 9 months ago #50881

  • TerriC14
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Glad it is up to a safe level!

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He's here - but with low platelets 3 years 7 months ago #51262

  • Katsim
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Quick update. Luke's platelets are 56 today - holding steady in the 50's. Looking forward to some higher numbers!!
Lowest count 1. Highest count 207 (ivig) Indium scan showed predominantly splenic destruction. No meds currently, just seeing how things go.

"Life isn't about waiting for the storm to pass - it's about learning to dance in the rain".

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He's here - but with low platelets 3 years 7 months ago #51611

  • Katsim
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115 on Monday :woohoo: :woohoo: :woohoo:

That have us the all clear for his first immunisations. He had them this morning & has been grumpy ever since. And has one huge bruise on his leg. I'm trying not to panic! *deep breaths*
Lowest count 1. Highest count 207 (ivig) Indium scan showed predominantly splenic destruction. No meds currently, just seeing how things go.

"Life isn't about waiting for the storm to pass - it's about learning to dance in the rain".

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He's here - but with low platelets 3 years 7 months ago #51614

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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So far so good! I hope it stays that way!

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