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If you are currently pregnant - support thread 7 years 5 months ago #51665

  • ret9
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Katsim,

Hope you and baby are doing well.

I'm a few days past 37 weeks and my last platelet count was 331k! I can't believe they are still this high. Here's hoping they stay up.

Baby girl is doing great, although she is still breech. It's looking like I'll have to schedule a C-section for 39 weeks unless she turns soon. We tried an ECV at the hospital Wednesday, but she didn't want to flip. Too cozy I guess. ;-)

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If you are currently pregnant - support thread 7 years 5 months ago #51667

  • 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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You're almost there! Good luck! :cheer:

My niece had a breech baby last year and was scheduled for a C Section. She went to the hospital early that morning only to find that the baby had turned during the night. They sent her back home. She was disappointed, no baby that day, but got to avoid the surgery. Maybe that will happen to you!

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If you are currently pregnant - support thread 7 years 4 months ago #51778

  • Katsim
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331??! Show off!! ;)

Brilliant that your counts are so safe. As long as baby arrives safely, it doesn't matter too much how she makes her debut. But I hope she turns if that's what you're hoping for.

We're doing well. Luke is 3 months & gorgeous! His counts are going up. He smiles, laughs, loves his big sister, hates naps, but sleeps well at night. Having him is bliss!!

My counts are dropping - but I expected that after my highs in pregnancy. No treatment yet, just monitoring, so I can cope with that just fine!

Good luck!! Can't wait to read your update when she arrives!! So exciting :woohoo:
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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If you are currently pregnant - support thread 7 years 4 months ago #51910

  • ret9
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Amelia Rose, born November 4, 2015 at 9:47 AM, 8 pounds 5 ounces, 19 3/4 inches. Both her and my platelet counts are in the normal range, even after testing several times.

She did remain breech, likely due to her size since I'm petite. I'm healing well from the surgery and, of course, so in love with baby girl.

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If you are currently pregnant - support thread 7 years 4 months ago #51914

  • CindyAnn
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
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Congratulations!!!! Glad both of you have normal counts

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If you are currently pregnant - support thread 7 years 4 months ago #51916

  • 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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Congratulations! I'm glad that both of you are doing well. :)

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If you are currently pregnant - support thread 7 years 4 months ago #51922

  • Katsim
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So happy to read this update ret!!! Congratulations!!! Enjoy those newborn cuddles!!

Glad Amelia arrived safely & you both had good counts :)
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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If you are currently pregnant - support thread 7 years 4 months ago #51923

  • Katsim
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So happy to read this update ret!!! Congratulations!!! Enjoy those newborn cuddles!!

Glad Amelia arrived safely & you both had good counts :)
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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If you are currently pregnant - support thread 7 years 4 months ago #51936

  • 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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New article:

Abstract

Type 2B von Willebrand disease (VWD) is frequently associated with distinct platelet morphology. Here we present a familial case of type 2B VWD with a novel VWF mutation (p.R1308S), which caused neonatal thrombocytopenia. The mother had been treated for refractory immune thrombocytopenia (ITP) for more than 20years. The most important hematological features of this case were large platelets and platelet aggregates detected on peripheral blood smears. Hemostatic tests showed enhanced ristocetin-induced platelet agglutination at low-ristocetin concentrations, absence of high-molecular weight von Willebrand factor (VWF) multimers, and low VWF cofactor activity/antigen ratio. In patients with intractable ITP, family history of ITP and consecutive neonatal thrombocytopenia, the differential diagnosis of congenital thrombocytopenia is mandatory. For this purpose, the identification of large platelets and platelet aggregates on peripheral blood smears is the key aspect of type 2B VWD diagnosis.

www.ncbi.nlm.nih.gov/pubmed/26278967

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If you are currently pregnant - support thread 6 years 9 months ago #54681

  • SGabaree1
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Hello everyone,
I see it has been awhile since anyone has posted, but I am very recently pregnant. Just about 6 weeks along now and waiting to meet with my high risk OBGYN in a couple of weeks. My counts were tested again yesterday and they had gone back down to 49, which is still in the okay range for having a baby.
My biggest concern is how to handle all of this with my husband. He is very overly concerned that now that we are pregnant there are going to be serious complications. Does anyone have any recommendations for helping out a stressed out hubby? I want to be able to comfort him, but I just don't know how. I feel like whenever I talk to him about this he only gets more worried and I don't even want to tell him when my counts go down anymore because it worries him. :(

-Sara

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If you are currently pregnant - support thread 6 years 9 months ago #54682

  • 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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Sara:

You could let him read all of the success stories here. I've been here for many years and we've not had an unhappy ending yet. We even had a woman once who delivered twins after having counts under 10k the entire time. Maybe your OB can also help to alleviate his fears.
The following user(s) said Thank You: SGabaree1

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If you are currently pregnant - support thread 6 years 8 months ago #54969

  • SGabaree1
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Hi Sandi,
Thanks for the comment, it is appreciated. Sadly, at 8 weeks we had a miscarriage. We will try again eventually but we are not sure if the miscarriage had to do with my vert low counts which had dropped to 13. After meeting with my doctor today she wants me to consider some of the different treatments and potentially putting off pregnancy for awhile. I was pretty sad about it all because I had to go back on the Dexamethasone, and now we are going to try the IVIG and see if my numbers stay up longer with that. I guess its just frustrating knowing that I may never had an answer, or a right time, to try again.

Thanks!

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If you are currently pregnant - support thread 6 years 8 months ago #54970

  • Rob16
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Sara, I am sorry about your sad news.

Has anyone mentioned the possibility of antiphospholipid syndrome? It can accompany ITP and can cause miscarriage, and increases the risk of blood clots. If not already done, you should have your blood checked for antiphospholipid antibodies.

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If you are currently pregnant - support thread 6 years 8 months ago #54971

  • SGabaree1
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Hi Rob,
Thank you for responding. I will definitely do some research on it. It has not been mentioned to me yet. I will ask my doctor about it and see if I have been tested or should be. Thanks for the insight!

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If you are currently pregnant - support thread 6 years 8 months ago #54974

  • 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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Yes, definitely ask about it. If you have the antibodies, they would treat you to avoid miscarriage.

I'm so sorry about the baby.

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If you are currently pregnant - support thread 6 years 8 months ago #55033

  • hollyspeckle
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Hello,
I was diagnosed with ITP, hmm, 6 years ago now as a kind of side-issue when I had severe anaemia. Now I'm pregnant for the first time, currently 15+4, and I've been having problems. My platelets are usually steady around the 60 mark, but recently they have been dropping (the haematologist said this would happen at some point). I've had to have blood tests every two weeks so far, which are a real pain because I'm majorly phobic about needles, after the bad experiences those 6 years ago. They've actually started letting me have gas & air while the blood is taken because otherwise I have a panic attack! So that's a lot better.
But last week I had been out for the day, and felt something wrong, and when I got to the bathroom I was pouring blood. Luckily it stopped quite quickly, because I had been convinced it was a miscarriage. I went to A&E at the town I was in, and they checked the heartbeat was okay, and said they thought it was down to cervical ectopion, but last night it happened again (all I'd done was sit up in bed), and today I've been to my actual antenatal clinic about it. They did a scan and found that I had a couple of pretty large bleeds in the uterus, which they said would've happened 2-3 weeks ago, and that it's even odds whether I lose the baby or not. Pretty awful stuff to hear. My last platelet count (5 days ago, though I'm waiting on results from today) was 41, and the haematologist didn't plan to interfere until it got to 30, but now I'm on steroids to try to boost it up and stop the bleeding. I guess it's normal to assume if the platelets are above 30 then it's okay, but in my case that doesn't seem to have held. Low platelets are surely going to have impacted the severity of the bleed, and the larger it is the less likely the baby persists.
I wonder if anyone else has had problems with bleeds during pregnancy, and it was alright? Or has had a miscarriage at what seems quite a late stage (pretty terrified about having to face that :( )
Thanks

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If you are currently pregnant - support thread 6 years 8 months ago #55034

  • SGabaree1
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Thanks Sandi,
I messaged my doctors office to see if it was something I can be tested for. I would definitely like to know.

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If you are currently pregnant - support thread 6 years 8 months ago #55035

  • SGabaree1
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Hi Holly, hopefully some of the others on here will know more about this! I am sorry to hear it's not going well. Having just gone through a miscarriage myself, I understand the frustration and hurt that accompanies this. I will keep my fingers crossed for you. I wish there was something more I could say, but if you need someone to chat with other than your specific questions above, let me know.

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If you are currently pregnant - support thread 6 years 8 months ago #55036

  • 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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Ladies:

I have been here for a very long time and I can honestly say that I have not seen many miscarriages due to ITP or low counts. Most of the time if a miscarriage occurred, there was an additional problem, such as APS. However, miscarriages happen to people sometimes for no known reason, even without ITP. Having ITP does place a person at greater risk though, as you know.

This is a good 'hope' story. Years ago, there was a woman here carrying twins who had low counts the entire time. No treatment worked and she even had a splenectomy while pregnant, which didn't work at the time. She delivered two healthy babies after a very long struggle.

Good things do happen, and I wish you both the best. I cannot imagine how devastating it must be to lose your baby. Keep the faith, and never stop asking questions.

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If you are currently pregnant - support thread 6 years 8 months ago #55050

  • virgo2k16
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Hi, I am currently 19 weeks along and my platelet count yesterday showed 81k. My demo wants to take a wait and see approach and wants to prescribe steroids when it drops around 70. He mentioned that small doses 10-15 MG won't hurt the baby but doing 60-70mg might cause developmental issues. I have been on nerves end hearing that. I had the same issue with first pregnancy, was on 15 MG throughout pregnancy although first was an ICSI-IVF and my second one has been conceived naturally. Also, my dd already has autism and I am now freaking out since the doc told me about it. I have been reading on the Internet about how the autoimmune connection and leaky gut and how you can pass it to your newborn child. I am looking for natural remedies. Maybe I am overreacting but having had an autistic child, I am praying that history does not repeat itself.

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If you are currently pregnant - support thread 6 years 8 months ago #55053

  • 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 don't think you are the cause of your child's autism, please don't take the blame for that. There are other factors that are suspected to cause it. Try researching.

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If you are currently pregnant - support thread 6 years 3 months ago #57445

  • rangaraj06
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my wife has itp and we had our first ivf done, waiting for the results about a week..
did u face any problems during the procedure and were u advised steroids after ET was done..

thanks in advance..

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