Hi, Im so sorry your having such a rough time. Poor Niamh, she must be so fed up as well. It is so emotionally draining isnt it? Dont worry about the social...
Hi Denise, Feeling pretty helpless to be honest. GOSH have said that the continual crying (which is what the problem is yesterday and today) is it most...
Hi Alison, Molly used to do lots of screaming and pain relief never did alot we triedall sorts of medication but the only way to stop the screaming was to...
Hi, I just joined this group and am glad to find there is one out there for this condition. My eleven month old son was just diagnoses with this on Thursday...
First I wanted to say that I am praying for all of your little ones and for each of you. I am sorry to hear that Micah and Niamh both continue to have such a...
Rebecca, Welcome! I am so glad you have joined us and that you were able to find us so early in your diagnosis. I hope that you will find comfort and help...
Hi Rebecca, Welcome to the group - I am so glad you have found us - this group is a great source of information & comfort. My daughter, Maddie is 2 & was...
Hi Alison, I really feel for you, it sounds like you're having such a hard time. Poor Niamh - I hope she settles soon. You know Connor played up on purpose...
Hi Welcome to the group my daughter is molly and sadley passed asay aged 3 1/2 i stayin touch with the site because the love and support is fantastic, and...
Welcome to our group, I hope that you feel comfortable and please let us know if we can help you in any way. Where are you from? Love to you and your family. ...
Hello Everyone, I wrote the other day and posted, yet I do not see it on here so I guess I will post again for the first time! Alison- It brought a smile to my...
Hi Jennifer. Thanks for the welcome. My son will be one year on 8/16. He started having seizures on 12/20/07, and ended up in the ICU at Connecticut...
Welcome to the group! You will soon find this to be a place where you can come and know you are not alone. Through reading and getting to know about all...
Hi everyone, I haven't been able to log on as my computer's hard drive crashed and I lost everything! Got a new computer now. I have been anxious to know how...
thanks. How is your Alexander doing? Can you tell me a bit about him? My Justin turns one in two weeks. He was just diagnosed with this on Thursday,...
Hi Rebecca, Welcome to the group, its so good that you found us. Sometimes we all get busy and caught up in our own lives, but if we can help I'm sure that...
Hi Rebecca, Welcome. It must seem like you are living a nightmare at the moment. I remember the first few weeks after Niamh's diagnosis and I just wandered...
Hello and welcome to the group. My son is Harry, and i know you have read about him on Harrysjourney. As margaret said this is not what any of us would have...
Thank you. Your strength amazes me, I am sorry for your loss and so inspired by your strength! ... From: whitley.denise <whitley.denise@...> Subject:...
Hi Rebecca, My son is Micah, we call him Micah moo because there are 2 Micahs in this group. Micah was Diagnosed about a year ago now and it has been one heck...
Hi Jennifer, Thank you so much for your message. I also contacted Dr. Marsh awhile back and asked him some questions. He was very nice and I think it's a...
Hi Rebecca, My name is Laura and I'm from Windsor, Ontario, Canada and I'm Rylie's mom. Rylie passed away March 15th of this year at the age of 22 months. I...
I would love to contact Dr. Marsh if he has interest of learning of new patients with this diagnosis. Is he open to hearing from me do you think? Does anyone...
thank you so much! ... From: rybozemom <lnantau@...> Subject: [MPEIparentsupportgroup] Re: Dr. Marsh To: MPEIparentsupportgroup@yahoogroups.com Date:...
Hi everyone sorry ive not been on for a while, ive been a bit up and down lately and really missing my little man. I sat and read through the guest book on his...
Hi Denise, I've just read your message and I know it's very hard. I've actually found that as the time has gone on (almost five months now) that while I don't...
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