My daughter had gentic testing today as the first of my kids to do so. How do people survive the long wait or do you just forget about it and then get the phone call.

Hi there,
We just had a year of genetic testing for various things. Test - wait - negative - next test - wait and so on. We finally found out what our little girl has about six weeks ago (Rett Syndrome). I found the waiting so hard every time. It is always in your mind, sometimes at the front and you can't stop thinking about it and sometimes it just quietly sits in the back. But it was always there. I don't have any fantastic advice for you. It is really difficult. Try not to Google too much as it is not good for you but I couldn't help myself. I hope that this time of year is really busy for you so it just sits quietly in the back of your head. Good luck and I hope every goes well for you and your family.
Anna.

We have spent the past 5 years waiting on genetic testing and all coming back (for us) so far with no diagnosis as to why my daughter is who she is It is very frustrating the waiting and even more when you don't get answers.

We have done it and we still are doing it. Seems to go on forever and sometimes I feel as if I will go mad.

But as hard as it sounds, try to put it right to the back of your mind and get on with life. They are so slow that you would go insane with the wait otherwise..

Good luck xx

We will be undergoing more when they find more possible types of leukodystrophy to test Lauren for (each type is genetic in some way)......we have already undergone one lot for Metachromatic.....there is nothing that you can do but wait, hope/pray (for either a negative or a positive which ever one would be best) and mentally prepare yourself for either outcome. But go on with your life and find distractions (EB is a good one lol). Its a tough process and some people never see an end. Thinking of you.

Thanks for the advice. Three of my fours kids have problems but she has the most obvious so they are testing her first and the wait is 3-6mths. Then they will test the others after that if anything shows. I have already googled because there have been a few things floating around for years for my oldest two so i have looked ages ago. It has just taken this long to finally get someone to send us to get the testing done.

I don't know how you wait but if there is a secret then please let me know. We are still waiting on the price on the testing for DS2's suspected condition so we can find out whether the SA Medical System will afford it for us. Then we are looking at an 8+ month wait for results after a tissue biopsy.

I do not envy you at all and really do not look forward to what will be another year of waiting myself but will try to deal with it as best as I can. I wish you all the best with your wait too.