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
Wee mans mummy : did u ask the nurses or doc b4 taking the jelly?? I'm worried about taking it during stims maybe should ask???? Or should have taken it b4 stim ing what did u do?
Yeah my FS said she didn't believe it would help but at worst I'd have nice shiny hair! Rofl. Dr's are very sceptical about natural therapies and would never commit to saying yep this will help.
The only adverse effect would be possible allergy to just keep that in mind the first time.
Did it come with a little white spoon! I just had one scoop a day before and during the cycle up until epu.
It was a friend who recommended it to me, she is a nurse and got pg her first cycle plus all her eggs were great quality
Wmm: it's very gross!! I put a bit on my tongue to taste it and test for alergy.....and eewww
So I took half a teaspoon out it at the back of my throat and swallowed I then search for something to take the taste away!!! Olives!!!! Popped two in and it was great!
Also just wondering is their a wired feeling u get after you take it????like um relaxed??was wired ....
Anyway how much did u take?? A day??
How is everyone else?
Hmmm not that I recall, but if you feel relaxed that's awesome!
I think I took whatever it said on the pot, like one or half of one of those wee white spoons.
Lu thanks for sharing your cycles, you have had quite a rollercoaster! Fingers crossed for this cycle for you, I'll be watching! Have you started jabbing yet?
WMM it sounds like this is the real jelly you took, not the tablets? I am guessing the tablets are not as strong / fresh / effective??
I'm going ok, just hoping that our PGD work up is more like the 8 weeks than the 12 weeks... I can't wait to get started, I would so much love a 2012 baby!!
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