No news yet on the 2nd blood test.
Thanks for all your kind words, thoughts and prayers. I can't tell you how much it means to me.
To address a few comments:
areyoukiddingme: Yes, I would let the clinic know. Anyone using this donor should know that this information. It's only an issues if the sperm donor is also a carrier.
amasingk8: I read the false positive rate was high but I didn't know how high.
Ophelia: Thankfully our insurance will cover formula/food/ and other interventions. We are so lucky. Not to get all political but everyone should have health care. It's a human right. Medicaid for all.
D----y: Thank you! It's helpful to hear of stories where people lead relatively normal lives. To actually know someone who is managing this would be helpful.
Em: Thanks so much. Yes, the medical sites freak me out. The ones that are more family/lifestyle based are much more helpful. My main concerns have been if she could have normal intelligence and is she'd have behavioral problems. I think it has something to do with the severity of the condition and how well you monitor/stay on the diet. Thank you so much for reaching out to a perfect stranger. I can't tell you how much it means to me that you did and that you can manage it well.
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Other thoughts/concerns: More kids and Embryo Donation
I have wanted a 3rd child. Mr. Peeveme says we are done. That was not a fight I was going to fight right now but one I was not going to loose. We have 7 embys just waiting. We have had to work so hard to have our children....this one would be an easy FET. How could we not? But they all have a chance of having PKU....kind-of puts a kink into those plans. Also, while Mr. Peeveme and I have not decided what to do with the leftover embys...it would also put a kink in those potential plans as well.
Does PGD test for PKU?
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Day to day struggles, complaints, observations while trying to build a family despite infertility (Primary and Secondary and now with donor eggs), have a career, and live a meaningful life.
Followers
About Me
- Peeveme
- married, mother to a toddler after infertility, step-parent to teenager who lives with us, trying to have baby #2 with an astounding lack of success. Finally successful once we tried donor eggs. Currently trying to balance complaining and appreciation.
Blog Archive
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2009
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August
(18)
- Ride my Roller Coaster
- No news yet
- Phenylketonuria (PKU) - In the "Spoke Too Soon" De...
- It doesn't matter and I'm not looking back
- Top of my list
- Just a few pics * Pictures redacted* It was a litm...
- She's here!
- Time's up! Your having a baby
- Black Eyes
- Things I learned from my Unmedicated Labor and Del...
- The First Time Part 2- Unmedicated Birth Story
- The first time Part 1
- Unmedicated Birth 2
- My cervix is a dirty liar
- To my Little Girl on the Eve of her Birth
- Unmedicated Birth
- Stats dork on the loose
- 39 weeks Update
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August
(18)
I Capture
Perfect Moments.
TTC History and current status
Trying since Jan 2004 when I was 33. I have one Daughter who is 2. Trying for another baby for over a year. One m.c and 2 IVF's later we are preparing for IVF#3 with Donor eggs. . I am 38.
Diagnosis= unexplained..but what that really means is poor egg quality.
FSH
April 2008: 11.8
March 2008: 10.7
November 2007: 6
November 2004: 3.9
Considered a poor responder but I have gotten OHSS on inject/iui cycles. Go figure!
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IVF #3. Donor eggs. Success. Healthy baby girl born Aug 19, 2009. 7 frozen blasts.
IVF #2no BCP...Antagonist protocol with a little estrogen priming . Gonal-f and Menopur. Maximum medication. 7 egg retrieved. 5 mature. 6 fertalized. ET 3 embys: 2-8celled, 1-6 cell. BFN
IVF #1 April/May 08 On max meds...produced 4 mature eggs and a bunch of smaller ones which did not grow fast enough..2 survived to ET (1-8 celled, 1-5celled)...BFN.
Oct 07-Jan 08- 4 iui's on lots of Gonal-F. Most times I had 3-4 mature follicles..BFN. Oh and I got OHSS twice.
April 07- Inject /iui BFP! Not to last very long. At 7 week u/s we were measuring behind. HCG not doubling as it should Waited for over a month to m/c naturally. Had to wait most of the summer for HCG to go down. Increased my wine intake from "moderate" to "heavy". I don't want to complain about that Summer but let's just say I wont be making any custom T-shirts with Summer 2007! emblazoned on them.
March 07- 1st inject/iui for baby #2. BFN
Feb 07- Stopped breast feeding to start trying for baby #2. I loved breastfeeding and hated to stop but I felt I needed to get a move on with baby #2.
Aug 06- Healthy-live baby!
Jan 05-Oct 05- 7 clomid/iui cycles and 2 inject/iui cycles BFP on 2nd inject cycle
Jan 04-Jan 05- Natural cycles with Charting..actual sex
Diagnosis= unexplained..but what that really means is poor egg quality.
FSH
April 2008: 11.8
March 2008: 10.7
November 2007: 6
November 2004: 3.9
Considered a poor responder but I have gotten OHSS on inject/iui cycles. Go figure!
____________________________________________
IVF #3. Donor eggs. Success. Healthy baby girl born Aug 19, 2009. 7 frozen blasts.
IVF #2no BCP...Antagonist protocol with a little estrogen priming . Gonal-f and Menopur. Maximum medication. 7 egg retrieved. 5 mature. 6 fertalized. ET 3 embys: 2-8celled, 1-6 cell. BFN
IVF #1 April/May 08 On max meds...produced 4 mature eggs and a bunch of smaller ones which did not grow fast enough..2 survived to ET (1-8 celled, 1-5celled)...BFN.
Oct 07-Jan 08- 4 iui's on lots of Gonal-F. Most times I had 3-4 mature follicles..BFN. Oh and I got OHSS twice.
April 07- Inject /iui BFP! Not to last very long. At 7 week u/s we were measuring behind. HCG not doubling as it should Waited for over a month to m/c naturally. Had to wait most of the summer for HCG to go down. Increased my wine intake from "moderate" to "heavy". I don't want to complain about that Summer but let's just say I wont be making any custom T-shirts with Summer 2007! emblazoned on them.
March 07- 1st inject/iui for baby #2. BFN
Feb 07- Stopped breast feeding to start trying for baby #2. I loved breastfeeding and hated to stop but I felt I needed to get a move on with baby #2.
Aug 06- Healthy-live baby!
Jan 05-Oct 05- 7 clomid/iui cycles and 2 inject/iui cycles BFP on 2nd inject cycle
Jan 04-Jan 05- Natural cycles with Charting..actual sex
I Capture
Perfect Moments.
7 comments:
I am not sure of the PGD - just stopping by to wish you well and hope that you get some answers soon.
{{{HUGS}}} With the right intervention and appropriate diet (if she does in fact have PKU) your gorgeous little girl will be nothing less than perfect :)
So glad you've found some support and useful information. Not sure if PGD can detect PKU, but it would seem like they could test for it if they know it is a specific risk. I'm still hoping this is all just going to disappear for you and that you'll get the good news that the first test was a false positive.
just wanted to wish you well and let you know I'm waiting with you. ~hugs~
oh my goodness what a whirlwind you're in right now. first off congratulations on the beautiful baby girl and i'll do my best to send off all the false positiveness i can possibly muster. it sounds like you've gotten some great comments from other people whose lives have been affected by PKU and if this is a road you have to walk you won't have to start it off alone. i wish you and your family all the best.
Oh, I'm so glad you were OK with me writing, and that you found it helpful - whew. I didn't want to over step.
As far as PGD - I think there is a specific test that you can request if you already have a PKU child. Something with having to have to know the DNA placement of the gene on the first child to be able to find it during an amnio. I'm far from being an expert on this, but if you should want the test, your genetics specialist should be able to steer you in the correct direction - there is a support board where I know there is someone who tested in utero.
The behvioral thing - it does have a lot to do with management - and family history. Depression already rages through ours, so it's something we will watch for. I kind of look at it with a "typical" view - who's to say the challanges he would have faced even without PKU, you know?
Keeping good thoughts :-)
Hoping with all my heart that this is a false positive. Not that it isn't managable, but still. Keeping you in my heart as you wait and work through this unexpected event.
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