Amanda Dykeman
Volunteer Support Group Moderator 2018-2023
Amanda Dykeman Facebook Moderator

I am the mother to five amazing children. I was only diagnosed with ICP in the last two of my pregnancies. Looking back, I likely had it with my second but didn’t know enough about the condition to know that the itching I experienced was abnormal, and it didn’t even occur to me to bring it up to my doctor.

My fourth pregnancy started out normal. At 20 weeks it went from normal to extremely high risk in the blink of an eye. My son was diagnosed with a rare lung malformation called a CPAM, and it was very large and had the potential to put him into fetal heart failure as well as a host of other possible complications. I think because of that diagnosis I was very aware of everything that happened during that pregnancy, so when I started itching at around 30 weeks I immediately brought it up to my MFMs. They wanted me to have blood work done to check my bile acid levels, which over the course of the next several weeks continued to come back normal. During those weeks I found the ICP Care website and the Facebook group, and they were both so amazingly helpful during that uncertain time for me. To know that other women were going through the same thing was oddly comforting. Finally, at 36+5 weeks pregnant I got a call saying that my bile acids were showing as elevated. I was induced four days later. I was so thankful to have a team that was aware of the condition and took it seriously.

Fast forward to 10 months after my fourth was born and I found out I was unexpectedly pregnant again. One of the first things that made me test was that I was experiencing that very specific itch. Knowing that ICP can occur early on, especially if you have pregnancies that are close together, I brought it up at my first prenatal appointment and asked if we could begin testing my bile acids. Unfortunately the midwives I was seeing, even though they were great, were not very familiar with ICP. Thankfully they were willing to hear me out and to listen and learn. They agreed that we could test, which I did for 13 weeks before my levels finally came back elevated! They diagnosed me and started me on Urso, as well as consulted with the MFMs in the hospital clinic they were located in. Around 28 weeks we decided to talk about delivery timing and we discussed that 37 weeks would be what I was comfortable with based on my levels. It wasn’t without some initial fighting and pushing that they agreed to let me deliver prior to 39 weeks. Thanks to ICP Care I was able to gather resources that showed the best recommended times for delivery.

I joined ICP Care as a Moderator for their Facebook group in 2018. It has been such an amazing experience to help other Moms, and I love that I could pay it forward for all the support I was given during my first itchy pregnancy.

Have you recently been diagnosed with ICP?

Would you like your personal experience, test results and medical treatment with this rare disease to further the advancement of science? Find out how your diagnosis can help through our Patient Registry.

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Have you recently been diagnosed with ICP?

Would you like your personal experience, test results and medical treatment with this rare disease to further the advancement of science? Find out how your diagnosis can help through our Patient Registry.