Not great news 2 of embryos have lost cells not sure what that means only one is an early blast and might be tested tomorrow morning won't know till then then wait some more for pgd results
How u hoing
I'm new here, we are just starting the process of doing PGD IVF...
We already have a 3.5yo son who has inherited an X-Linked condition from me (i.e. I am a carrier but he is affected). We are doing PGD IVF to try and avoid the condition in our second child.
We've seen the Fertility Specialist and Genetist and also had our nurses and counsellor appt's with Genea. Next step is an appointment with the PGD Scientist before they start developing the genetic test for our family. So I guess we are still 2-3 months away from actually beginning IVF. We're still wrapping our heads around the science, and all the decisions we may have to make along the way.
In our case the specific gene causing the condition has not yet been identified, but they have narrowed it down to a small section of the X chromosome and identifying markers. Because of this we've been given a 95% chance of correctly identifying an affected embyro but not its not guaranteed.
There is still one thing I'm unclear on though (it may be come clear at our scientist appointment - I will certainly be asking the question there). Because we have an X-Linked condition, embryos have 3 outcomes : Affected (male, 25% chance), Carrier (female, 25% chance) or Unaffected (either, 50% chance). Obviously our hope is for unaffected embryos. However if we don't get any unaffected embryos I'm unsure whether we will have the option of using embryos which are carriers? And whether we would want to or not? Its been mentioned that it might not be our decision as it might against Genea policy to transfer an embryo which is a Carrier?
Does anyone else have experience in this sort of scenario? Any advice on what other kinds of questions I should ask the scientist?
I'm also with Genea and I was allowed to use carriers, we didn't end up using one but we were allowed and still have one frozen with them.
Our situations are very similar, I also carry a X linked disease altho we were fortunate enough to know alot about it due to it being in my family for generations and diagnosed when by brother, now 27, was 6 months old. All my grandmothers brothers died as children but they never knew why. We are so lucky to live in this age of medical miracles, doing pgd was the best decision we ever made.
Do you mind me asking the effects of your sons condition?
Try not to get hung up on the 95% thing. Think of it as their 'get out of jail free card'. It's pretty much to cover their butts so they can't be sued if they do ever get it wrong.
I severely questioned them after our 3rd cycle when we had 7/7 unaffected. I accused them of getting it wrong as it was just to hard to believe but he basically said trust me it's right. As in, we don't make mistakes :b
As for the scientist appointment I would advise that you write down your questions and make sure you get answers you understand. Some of them tend to forget we don't understand science talk! It's like talking to Temperance Brennan from Bones LOL!
Considering our similar conditions and the fact that we are with the same clinic feel free to ask me ANY questions
Last edited by WeeMansMummy; December 21st, 2011 at 08:14 PM.
My son's condition is not life threatening so doesn't sound as severe as your scenario ... basically the nerves in his feet and hands deteriorate causing muscle wasting, pain and loss of function (not unlike Muscular Dystrophy I guess?). Its a degenerative condition that progresses at a different rate for everyone so its hard to know what will happen. Supposedly it most commonly shows up in adolesence but my son showed symptoms at his 3month checkup. He is 3.5 and can walk but can not jump, run or climb stairs yet. He may end up in a wheelchair. I worry that the early onset might be a sign of a more severe condition.
If we had another child with the same condition, it wouldn't be the end of the world... but I look at my son who is a beautiful, gorgeous little boy who struggles and will live with pain and progressively worsening disability for the rest of his life and I know that if I could take away that burden I would in a heartbeat! Hence us going down the PGD IVF route for the next child.
Its good to hear that you would be allowed to use your carrier embryo! I guess I hope that option is available to us, I will definitely be getting to the bottom of it at our scientist appt. I'm quickly becoming fluent in the terminology and scientist speak (I love Bones btw!). Its amazing that you got 7 unaffected embryos - I'm crossing my fingers I'm so lucky :-)
I would assume that you would be able to transfer carrier embryos if that was your choice. In your situation, if I only had carrier embryos available I would probably use them because I figure if our science is this fantastic in this day and age that we can test for these things and avoid having affected babies, then who knows how far things may have progressed by the time your carrier child decides to have children
Best of luck with everything! I thought the IVF/PGD process was going to be really scary and daunting (and for some it is), but I found it much easier than I expected it to be.
Hi wee mans mummy... Hope your well!!!! How old is your little one now???
I'm doing ok was very hard after the last cycle .....but will cycle again soon... I have been doing accupuncture weekly and have been taking dhea fingers crossed for more eggies ,,,,
Hi and welcome red monkey
I wish you all the very best for your cycle.....
I have done four iVf pgd cycles the first of which was successful and I'm very lucky to have a 2 year old little boy
We did the pgd to scene for neurofibromatosis it's a genetic contition that I have.... In my situation you either have it Or not no carriers as such....Soni can't help you with that question
I will tell you that they are really great at genea ,,,,,
Anyway please feel free to ask any questions about cycling testing etc etc
It's a journey and it's great to have people eto share it with that understand......
Hey Lu! We are great thanks Wyatt is 9 months and getting very cheeky!
I have the same view on the carrier thing as Mylitta. By the time they have kids technology should be so advanced it won't be as hard for them
There is no way I ever thought I could do anything like pgd so things can only get better!
Hi Lu & wee mans mummy, thanks to you both for the welcomes!!
Looks like you ladies have had a long road too!!
I am looking forward to finally getting started, it is long, slow and difficult isn't it!
We haven't told anyone we know we are doing the PDG, so we went to fill in our forms last night with all the witness spots and we were a bit stumped! Anyway got a girl at the local chemist to do thm for us and will post them off today.
Lu - fingers crossed especially for you on this new cycle!! Do you do anything special leading up? I am *trying* to lose a bit of weight and get generally healthier - the more eggs the better right when some don't fert, then some are affected, might not leave us with many!!
Hi went out and bought my self some royal jelly!!!!
How much do u take???
Bf....Here is my cycle summary
CYCLE 1 August 2008
age: 28
drugs: lucrin ten units puragon 150 or 175 but I h ad an overvstim slightly
10 eggs
6 fert
2 embryos tested
1 with nf 1 with out
1 with out was transferred and we are so very lucky to have a beautiful healthy 2 year old son!
CYCLE 2 October 2010
Age: 30
Drugs: lucrin puragon 175
6 eggs collected
4 Embryos Biobsied
All four with *NF 1 gene
No transfer
CYCLE 3 June 2011
Age:31
Drugs: 175, 225, 250 ,300
6 eggs collected
2 Embryos Biobsied
Both with NF 1 gene
No transfere
CYCLE 4
November 2011
Age: 31
Drugs: lucrin and puragon 300 all the way through
3 or 4 eggs collected
3 fert
None lasted to test
No transfer
Cycle 5 January 2012
New short cycle
Age:32
Drugs Puragon 225 (smaller dose)and I think ovadrill after a certain amount of days
New trials
Weekly acupuncture 10 week lead up, dhea captules 3x 25mg day and now royal jelly
Fingers crossed!!!
Hope this helps bf all the best Hun .....
How is everyone traveling ???
Lu
Xxx
Registered User
I'm so so so incredibly sorry. My heart is breaking for you
Wyatt is 9 months and getting very cheeky!
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