Greetings Everyone, Please let me begin by wishing everyone a happy and healthy new year! I'd also like to apologize for the length of this post, but I am...
Hi Paula I am glad your are asking questions to this group and hope you can find some more answers. My daughter is 6yrs now and was diagnosed at 2yrs with...
Hi~ I'm so sorry we've been out of touch for the past few months. We've been busy with the new "addition" to our family and the holidays. I've caught up on...
Hi Karen, Thank you so much for sharing that information. Unfortunately, late yesterday and this morning, we started seeing signs of dystonia (his elbow would...
... Paula My name is Kelly All three of my children have ahc that present in different ways but ian seems alot like my middle son max. Feel free to call me...
When Addie was 1yr-2yr she had the eye deviations and some limpness in an arm (on same side as eye deviations. She had some weakness in leg but not much....
Hi Paula. Welcome and thanks for telling us about Ian. My name is Nancy and I am the grandmother to Cameron who is 7-years-old and has AHC. Cameron's mom,...
Greetings Nancy, Thank you so much for sharing! I am so sorry to learn of Cameron's many disorders. My heart goes out to you and your family. I am once again...
Wow. I am beginning to see just how fortunate Ian (and we ) are in regards to triggers, medications and other illnesses. Fortunately, the only trigger at this...
Thank you Kelly, I definately will! Best, Paula ... present in different ways but ian seems alot like my middle son max. Feel free to call me at home 978 667...
Hi, just signed on after a long while, and saw your message, I also want to wish everyone a happy and healthy new year to start off with, we changed our ...
Paula My name is Mindy and my daughter Hailey has AHC...she will be 9 this month (Jan.) ( Hard to believe we've made it this long) I just read your letter...
MandM421@...
Jan 3, 2006 6:45 pm
4350
Hi Paula, We have a large family too and when Addie was very young my husband and I would disagree about whether something was even happening. I was sure I...
Greetings Mindy, Thanks for responding and Happy Birthday to Hailey!I think you are right about the vomiting being associated with headaches. By sharing ...
Greetings Karen, I had to laugh after reading your post because my husband and I, just yesterday, "debated" whether or not we saw posturing. He saw one thing,...
We live outside Boston in Concord, MA so if you are in the area, please let us know and we can get together or put you up for a stay. I remember the first time...
Paula Did you say Ian has not been officially diagnosed with AHC? You may want to talk with a doctor about trying flunarizine if you haven't already, to see...
Hi Paula, This is Dana Tasi. My daughter Brooke is 15 years old and has AHC. I saw in one of your emails that you now live in Connecticut. We live in...
Dana Tasi
dtasi@...
Jan 6, 2006 12:52 am
4357
Thanks Karen. I appreciate the offer and please allow me to extend it to you if you are ever in Connecticut. We are in Lebanon, not quite as historic as...
He was given a "working" diagnosis of AHC. That said, even though the calcium channel block came back negative, our pedi- neuro still feels very strongly that...
Hi Dana, We live in Lebanon. If you are ever up this way please let us know. I know there are a few other families in CT., but I have no idea where. I only...
hi my names joanne we live in great britian and have a 2 and half year old daughter kelsey who started been ill at 4 months old first with croop then started...
Hi Paula- Cameron's mitochondria disorder was diagnosed via a muscle biopsy. We were hesitant to do it because the test itself is so invasive and painful, but...
Hi everyone! My son has recently been diagnosed with AHC by Dr Silver. We live in Iowa and travel to Chicago for medical care for my son. My son Brian is 2 and...
Hi Julie, That's quite common with AHC. My son Alex (8 years old) has what we call full body attacks where he can't even hold up his head. Thankfully they've...
Dear Kelly and Paula, We have 2 girls, 11 and 14 with AHC. We may be one of the families that Dr. Svwoboda mentioned. Both seem to be mildly affected - only...
Ok. TJ has been having some strange stuff happening, and after taking him to see the doctor's, i was told some stuff and would like to hear if anyone else was...
I am not sure, but I think the docs are very hesitant to talk about "long range" stuff because they DON"T really know, and they don't want to freak us out. I...
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