tag:blogger.com,1999:blog-4842436578398990741.post8664119878176582871..comments2014-04-19T09:41:39.834-07:00Comments on Clayton's Quest: A Mutated Gene Has Been Found!Claytons Questhttp://www.blogger.com/profile/05381172448259276375noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-4842436578398990741.post-11080759703192008462011-05-06T16:01:20.090-07:002011-05-06T16:01:20.090-07:00Really?! I would love to talk more with you. Ple...Really?! I would love to talk more with you. Please email me at clayton.tammy@gmail.com when you can.Tammyhttps://www.blogger.com/profile/16132422392222511875noreply@blogger.comtag:blogger.com,1999:blog-4842436578398990741.post-51172962857690537982011-05-06T07:33:43.058-07:002011-05-06T07:33:43.058-07:00FYI
My daughter also diagnosed with SAMHD1 (AGS5)
...FYI<br />My daughter also diagnosed with SAMHD1 (AGS5)<br />She is 6 years old, she is doing OK now.XSLThttps://www.blogger.com/profile/01111871267412409541noreply@blogger.comtag:blogger.com,1999:blog-4842436578398990741.post-50423095218530674062011-05-05T13:29:00.828-07:002011-05-05T13:29:00.828-07:00Thank you so much XSLT for that information. I ha...Thank you so much XSLT for that information. I had not seen the yahoo group. I just checked it out and it looks great. Thank you for your help.Tammyhttps://www.blogger.com/profile/16132422392222511875noreply@blogger.comtag:blogger.com,1999:blog-4842436578398990741.post-85636553434797141362011-05-05T10:45:48.742-07:002011-05-05T10:45:48.742-07:00AGS:
Here is the website for more information &...AGS:<br />Here is the website for more information & post message at guest book.<br /><br />other families of AGS kid, can answer<br /><br />1. http://www.aicardi-goutieres.com/<br />2. http://www.aicardi-goutieres.org/index.jsp?lingua=ENG<br /><br />AGS parents yahoo group:<br />http://health.groups.yahoo.com/group/aicardi-goutieres/XSLThttps://www.blogger.com/profile/01111871267412409541noreply@blogger.comtag:blogger.com,1999:blog-4842436578398990741.post-76141163424456552352011-04-24T09:42:45.122-07:002011-04-24T09:42:45.122-07:00It sounds like you have a wonderful Dr. who is wil...It sounds like you have a wonderful Dr. who is willing to keep searching..... some answers is better than none.... We as always will keep you all in our prayers and have faith the right answers will come. HAPPY EASTER MORNING....<br />JanetteClaytons Questhttps://www.blogger.com/profile/06518167649714736139noreply@blogger.comtag:blogger.com,1999:blog-4842436578398990741.post-83330078587484697542011-04-23T23:20:24.444-07:002011-04-23T23:20:24.444-07:00Yes, Dr. N is the one who is suggesting the tests....Yes, Dr. N is the one who is suggesting the tests. He has believed it was AGS from the beginning even when all of the normal testing for it was coming back negative. This set of tests that we have done now were not approved for payment with Bryce, so when Annalise began with symptoms, he jumped a few extra hoops and got insurance to cover it for her. He is such a great doctor. He will just not quit until he has an answer. He is also great at thinking outside the box. I am so glad that we have both found him. I'll be thinking about you and Ryder on Monday. I was wondering if you had heard anything more on that. Please let me know what you find out! <br /><br />And yes, Jennifer, the true meaning of Easter has become much more personal over the last couple of years! We cannot wait until that Sunday comes!Tammyhttps://www.blogger.com/profile/16132422392222511875noreply@blogger.comtag:blogger.com,1999:blog-4842436578398990741.post-42103254447405277492011-04-23T17:43:18.895-07:002011-04-23T17:43:18.895-07:00Wow!!!That is quite some news!!! It is hard to kno...Wow!!!That is quite some news!!! It is hard to know what to do with that kind of news, but hopefully it will be something you/all those out there w/leukodystrophy will find useful and can be built on for some help for our kiddos! I'm waiting for the last PMD test (should get it Monday.) Is Dr. N suggesting all these tests?Denise Hauerhttps://www.blogger.com/profile/08979186247449684127noreply@blogger.comtag:blogger.com,1999:blog-4842436578398990741.post-84891063939830947162011-04-23T17:35:29.848-07:002011-04-23T17:35:29.848-07:00Tammy--I don't know how you do it! I can'...Tammy--I don't know how you do it! I can't even imagine being in your shoes. I'm sure Easter Sunday has a very special meaning for you in light of all your family is experiencing here in mortality. I hope that the knowledge of the resurrection brings you peace and hope. I always remember what Elder Wirthlin said, "Sunday will come." Oh how I wish I could do something else other than donate money and pray. Please let me know if there is ANYTHING we can do!!Jenniferhttps://www.blogger.com/profile/09909365712160978543noreply@blogger.com