Carrier for X-ALD with questions

Luna22 · 03-20-2008, 06:38 AM

I had difficulty getting pg with my first son. He is a Clomid baby after having tried for several years. Now, I have be diagnosed as a carrier for x-linked adrenoleukodystrophy. My son is healthy, he doesn't have the gene. My second attempt at having a child will be more involved than the first because it will have to be through IVF w/PGD. I want to have another child, I feel that it will benefit my son to have a sibling, but maybe all of my difficulties are a sign that I should leave well enough alone. I have a wonderful healthy baby, he is a joy and I love him more than I thought was possible. That love grows everyday. Just as with the first attempt at getting pregnant I want desperately to have a baby again, but this time the territory is so unfamiliar that I have many unanswered questions. I guess, despite my true desire for number two, I just don't know what to do. Any ideas?

**BC-RyansHope** · 12-22-2008, 03:47 PM

Hi, If you are still around FT, I was wondering what you decided to do.
I am waiting for the results of my son's genetic tests. Waiting to see if his hydrocephalus due to aqueductal stenosis was x-linked. If it was, we'll have to do a fresh IVF cycle and do gender selection rather than FET in March.

Luna22 · 12-23-2008, 07:49 AM

I'm still around. Well, I decided that I would try it with clomid again. We have a 75% chance that the baby will not have the disease (50% if it is a girl, 25% unaffected boy). I know it seems risky. But, I wouldn't trade my son for anything in the world even if he was sick. So, I know I will love a new baby regardless of the outcome. I figure I do my part and let the universe do the rest. Does that sound too cheesy?

I'm really sorry to hear about your son. I hope that everything comes out ok. I know that this is a very hard time. The waiting is the worst. It almost drove me crazy. Please let me know how things turn out. Sometimes you just need someone to listen and be there for you.

Best of luck with everything.

Luna22 · 12-23-2008, 08:00 AM

Silly me. I also noticed that we have a lot in common as far as PCOS too. I'm sorry about your loss.

pinkbabe · 08-26-2009, 01:58 PM

Hi Luna, i am new to this site, and i am also a carrier of ALD. I am 37 years old, and im waiting for my first cycle of IVF with PGD. I do not have any children already, as i did not know that PGD was available until just recently. My father died at age 56 years old with ALD, which was very painful and upsetting to watch, and i did not want to put another human being through this terrible time, not even to have a girl, that may only be a carrier like myself, as there is still heartache, deciding what to do for the best in my future. If you or anyone else would like to discuss anything, then i will be here. x

Luna22 · 08-27-2009, 08:53 PM

I'm sorry to hear about your father. I know it is hard to see the suffering and I understand not wanting to inflict that on a child. The more I thought about those risks the more I wanted to wait and see how I felt. I finally decided that I am going to do IVF with PGD as soon as I change insurances. Better safe than sorry. I wish you luck with your go at it. I'd love to hear about your progress and chat some more. My thoughts will be with you.

pinkbabe · 08-28-2009, 09:08 AM

Hi Luna,
Im so glad you have decided to choose IVF with PGD, it is such a great opportunity for people like ourselves. I would love to keep in touch with you, to see how your going too. I am still waiting to be referred, hopefully soon. Take care, and all the very best to you! keep in touch x

03-20-2008, 06:38 AM	#1 (permalink)
Luna22 0-99 post 2 of hearts Join Date: Mar 2008 Location: San Antonio, TX Posts: 8	Carrier for X-ALD with questions I had difficulty getting pg with my first son. He is a Clomid baby after having tried for several years. Now, I have be diagnosed as a carrier for x-linked adrenoleukodystrophy. My son is healthy, he doesn't have the gene. My second attempt at having a child will be more involved than the first because it will have to be through IVF w/PGD. I want to have another child, I feel that it will benefit my son to have a sibling, but maybe all of my difficulties are a sign that I should leave well enough alone. I have a wonderful healthy baby, he is a joy and I love him more than I thought was possible. That love grows everyday. Just as with the first attempt at getting pregnant I want desperately to have a baby again, but this time the territory is so unfamiliar that I have many unanswered questions. I guess, despite my true desire for number two, I just don't know what to do. Any ideas?

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12-22-2008, 03:47 PM	#2 (permalink)
BC-RyansHope FT Diner ~open 24/7 BYOC*~ Join Date: Oct 2006 Location: Missing my Ryan 11/6/08 Posts: 7,376 Blog Entries: 260	Hi, If you are still around FT, I was wondering what you decided to do. I am waiting for the results of my son's genetic tests. Waiting to see if his hydrocephalus due to aqueductal stenosis was x-linked. If it was, we'll have to do a fresh IVF cycle and do gender selection rather than FET in March.

12-23-2008, 07:49 AM	#3 (permalink)
Luna22 0-99 post 2 of hearts Join Date: Mar 2008 Location: San Antonio, TX Posts: 8	I'm still around. Well, I decided that I would try it with clomid again. We have a 75% chance that the baby will not have the disease (50% if it is a girl, 25% unaffected boy). I know it seems risky. But, I wouldn't trade my son for anything in the world even if he was sick. So, I know I will love a new baby regardless of the outcome. I figure I do my part and let the universe do the rest. Does that sound too cheesy? I'm really sorry to hear about your son. I hope that everything comes out ok. I know that this is a very hard time. The waiting is the worst. It almost drove me crazy. Please let me know how things turn out. Sometimes you just need someone to listen and be there for you. Best of luck with everything.

12-23-2008, 08:00 AM	#4 (permalink)
Luna22 0-99 post 2 of hearts Join Date: Mar 2008 Location: San Antonio, TX Posts: 8	Silly me. I also noticed that we have a lot in common as far as PCOS too. I'm sorry about your loss.

08-26-2009, 01:58 PM	#5 (permalink)
pinkbabe 0-99 post 2 of hearts Join Date: Aug 2009 Location: England Posts: 5	Hi Luna, i am new to this site, and i am also a carrier of ALD. I am 37 years old, and im waiting for my first cycle of IVF with PGD. I do not have any children already, as i did not know that PGD was available until just recently. My father died at age 56 years old with ALD, which was very painful and upsetting to watch, and i did not want to put another human being through this terrible time, not even to have a girl, that may only be a carrier like myself, as there is still heartache, deciding what to do for the best in my future. If you or anyone else would like to discuss anything, then i will be here. x

08-27-2009, 08:53 PM	#6 (permalink)
Luna22 0-99 post 2 of hearts Join Date: Mar 2008 Location: San Antonio, TX Posts: 8	I'm sorry to hear about your father. I know it is hard to see the suffering and I understand not wanting to inflict that on a child. The more I thought about those risks the more I wanted to wait and see how I felt. I finally decided that I am going to do IVF with PGD as soon as I change insurances. Better safe than sorry. I wish you luck with your go at it. I'd love to hear about your progress and chat some more. My thoughts will be with you.

08-28-2009, 09:08 AM	#7 (permalink)
pinkbabe 0-99 post 2 of hearts Join Date: Aug 2009 Location: England Posts: 5	Hi Luna, Im so glad you have decided to choose IVF with PGD, it is such a great opportunity for people like ourselves. I would love to keep in touch with you, to see how your going too. I am still waiting to be referred, hopefully soon. Take care, and all the very best to you! keep in touch x