I personally decided to do IVF with PGD testing and also did a CVS test at 12-13 weeks. I understand your feeling. Perhaps don't look at the sono until after the cvs test results? Find someone who does CVS tests often to do the test. It takes a week or two for results from the lab. Good luck!!by digging.deep.to.stay.positive - Huntington's Disease Support Center
It has been a while since I posted but thought I would share the news that we have one healthy and HD free 2 year old and pregnant with another now. We did IVF with PGD. Followed by a CVS to confirm exact CAG repeat to be 99.9% sure. If anyone has questions about the process please ask. We did day 3 embryo testing the first time and day 5 embryo testing the second time as technologiesby digging.deep.to.stay.positive - Huntington's Disease Support Center
It has been a while but I wanted to update everyone. ****Please note I am looking for happy thoughts or comments and not anything negative or opinions as I have made my decision and content with it**** My husband and I went through IVF with PGD and we are pregnant. After much decision, I decided to do a CVS test to confirm that the baby doesn't have the HD gene. My lab suggests you do thisby digging.deep.to.stay.positive - Huntington's Disease Support Center
Hello... I wanted to mention that you can do IVF with PGD and not know whether or not your husband has the HD gene. They would keep the results to themselves. It is another option. Also in my opinion I would not go through insurance for the test. I would pay cash and use a fake name. Again just my opinion. Good luck!!by digging.deep.to.stay.positive - Huntington's Disease Support Center
Can someone recommend a good brand for COQ10? My husband just ran out and I picked them up at CVS or Costco in the last. Thinking there might be better brand out there. Thanks!!by digging.deep.to.stay.positive - Huntington's Disease Support Center
They would freeze from the first cycle on day 3 and add to the next cycle. I am being told that some people who do PGD actually go through 3 cycles so they have a lot of embryos to test. I do agree that the unfreezing process is another complexity and could lower the number from the original pre-freeze count.by digging.deep.to.stay.positive - Huntington's Disease Support Center
I would like to know from anyone who did IVF with PGD....how many embryos did you have when you did PGD? I am hearing from my IVF place that some people do more than one cycle so they have more to test at the time of PGD since it is expensive. Has anyone done more than one cycle so the amount of embryos was a greater amount? Thanks for your responses!!by digging.deep.to.stay.positive - Huntington's Disease Support Center
Thank you!!!by digging.deep.to.stay.positive - Huntington's Disease Support Center
You have a fair statement that I don't have to listen to bad advice. This issue for me is that the comments were not on topic. I didn't ask....should I have kids? Or how can I have kids and make sure it is free of HD. I was asking for personal experience on testing which both Stacy and Noreaster commented on. I wish that the responses stayed on topic. Thank you so much for making my hby digging.deep.to.stay.positive - Huntington's Disease Support Center
When I first read the post, I was upset and decided to not answer. Now checking back I see more responses. It would be nice if people read about my story before responding. I am not the potential carrier therefore egg donation is not an option. My husband has a CAG of 39 so he has lower risk and potentially not going to get HD. Time will tell. I watched my father in law in his laby digging.deep.to.stay.positive - Huntington's Disease Support Center
Stacy, I was told that you can't test until they are 18. We are told that they are 90% sure when doing PGD. I feel like I want to know for sure that my kids will be hd free but not happy with the testing options. The PGD lab recommends that you do test. Decisions, decisions. I still have time as we didn't start our cycle just yet.by digging.deep.to.stay.positive - Huntington's Disease Support Center
Both CVS and amino tests will give you the CAG repeat of the embryo. If you decide to do IVF with PGD then you do not find out the CAG repeat but they only use the embryos that are free of the hd gene. You can do that non disclosed.by digging.deep.to.stay.positive - Huntington's Disease Support Center
Yes please PM me. Not sure how to do that. My place says 90%. Thanks for responding.by digging.deep.to.stay.positive - Huntington's Disease Support Center
As you may have read.... My husband and I are starting the process for IVF with PGD. I was wondering if anyone knows if you can test the cord blood from birth for HD? I know you can for genetic diseases but not sure if you can for HD. Per the laws you can't test a non systematic person until age 18. I know we will be 90 % sure that the baby will be HD gene free but I really want to be 100by digging.deep.to.stay.positive - Huntington's Disease Support Center
My husband is a CAG of 39 and his father was 42 and so is his sister. So it is odd that my husband got a lower penetration then his father. This disease is not so clear cut. We are going through the steps to do IVF with PGD. We would like to be 90% sure our baby is HD gene free. Also onset is really dependent on many factors and not only age or CAG repeat. My father in law hby digging.deep.to.stay.positive - Huntington's Disease Support Center
Just to point out my husband's good count is 22 so sometimes it can be over 20. Thank you Stacy for looking into this.by digging.deep.to.stay.positive - Huntington's Disease Support Center
I am going through IVF with PGD. We have not started IVF but going through the pre-testing part for the PGD. I am not sure which place you are using....I am using Reprogenetics and they are great. Possibly try calling them instead? Amy or Jill are great. You can PM me and I will give you the numbers. It is my understanding that you can do this non-disclosed with just the DNA from you anby digging.deep.to.stay.positive - Huntington's Disease Support Center
We got the authorization from the insurance company to do IVF....so excited!!! Now just waiting for the lab to be ready for us to do the PGD. Once we get the green light then we will start our first round of IVF. This is a long journey but the reward is well worth itby digging.deep.to.stay.positive - Huntington's Disease Support Center
Smiley....I remember the waiting too. Does your insurance cover IVF for any reason. We have now dine all our testing. Need to wait for the results of a few. Then will or won't the doctor support us in going through insurance. More to come in that. PGD labs has been working for a week and a half. Many more to go.by digging.deep.to.stay.positive - Huntington's Disease Support Center
Hi Stacy I have seen your website and need to go back and read it again My comment about religion is I thought Catholics frowned upon IVF. Maybe I am wrong? Personally I don't and can't judge because I wouldn't wish what my father-in-law went through to anyone even "my worst enemy" Reprogenetics has our blood and the mouth swabs and it has been a week. Need to wait up to 11 mby digging.deep.to.stay.positive - Huntington's Disease Support Center
You can go onto the HDSA.org site. Search for genetic testing.by digging.deep.to.stay.positive - Huntington's Disease Support Center
My suggestion is to get tested using a fake name. You can pay for the test in cash so there is not a trace. Just my suggestion.by digging.deep.to.stay.positive - Huntington's Disease Support Center
Has anyone gone through IVF with PGD? I am curious to learn from someone's experience. On Monday, we go to the doctor to get a blood draw from my husband and myself to be sent to the PGD lab to start the prep work. Also we are sending mouth swabs of my mother-in-law and sister-in- law. I can't believe it will take up to 12 weeks for them to prepare. The waiting came...I hope that they areby digging.deep.to.stay.positive - Huntington's Disease Support Center
Hi Smiley, I read some of your other posts and see that you are young....age 25. If your husband does test positive for the HD gene then at your age you are a great candidate for IVF with PGD. You will produce a lot of eggs at that age. First things first....you need to wait for the results of the test. Curious, did you go through insurance or pay out of pocket? If you pay out of pocketby digging.deep.to.stay.positive - Huntington's Disease Support Center
It was around Thanksgiving when you first posted. Not sure if you still look on the board. Thinking of you. I went to a doctor yesterday to start getting tests done prior to IVF cycle. However I am wondering if I should try one time getting pregnant naturally? I would get the CVS test done too. How are you doing? Would really like to talk to you.by digging.deep.to.stay.positive - Huntington's Disease Support Center
Broken.chair - I am thinking of you and support your decision very much. I realized this is not an easy time for you but hopefully in the holiday season you will be distracted and this time will pass by. Personally I think if you want a child then you should and you have options. Perhaps donor for sperm or PGD along with IVF. If you want to talk/email let me know. I feel like I found a friendby digging.deep.to.stay.positive - Huntington's Disease Support Center
When you got to a genetic counselor, they support any decision you make. 1) get prego naturally and go with cvs test and abort if the baby tests gene positive or not. You decide. 2) go through IVF and PGD and only I implant the non affected embryos 3) after implanting then cvs to test just to make sure the baby is non affected I have been told that the lab could make a mistake so people mby digging.deep.to.stay.positive - Huntington's Disease Support Center
I "google" about HD and pregnancy at times and this thread came up and I almost feel like I am reading about me. My husband is also 32 and was tested for HD. He is in the grey area. His father passed away this summer and his sister is gene positive. He will only have kids if we don't pass this disease onto the next generation. We can end it if in our opinion we are smart and get tesby digging.deep.to.stay.positive - Huntington's Disease Support Center