I would really like to be involved in some research into MPEI - in some weird way I feel that I need to do something worthwhile with Niamh's illness, or all...
-- Dr. Appleton in the UK is setting up a study centre on MPEI - those of you in England know him well, I would guess. I've been in contact with him and sent...
Hiya Rachel, Thanks for this - we've been looking for ages and we know there are a few that are supposed to be good for special needs children, but they don't...
Margaret, I just got an email from Sami about 4 days ago, that is how I found out about Harry. Cooper is doing well. Infact he was doing so well that Sami and...
Hi Rachel, I've been waiting to hear news from Denise, when did you last hear from her? I'd love to know how Cooper is going but I haven't heard about him ...
I just wanted to add that I have invited another couple that wrote on Harry's guest book. They have a Micah too that has just been diagnosed with MPEI after...
Hi everyone, Ijust heard from a grandmother here in Ontario whose little granddaughter,Rebecca, was diagnosed with MPEI just days before Christmas. I told her...
Hi Nikkie, The car seat that we just got for Micah is an Evenflo Triumph Advance LX. It is wide like a lazy boy, in the backward position it tips back far...
HI Nikkie, the crying is probably pain related. Kristan used to cry a lot when she was younger and occasionally still will, we always thought she must have a...
Alison, I just wanted to say sorry about your father-in-law. I lost my dad three years ago and he went so quickly, he had a massive heart attack, no warning,...
Hiya, Niamh used to cry/scream inconsolably for days at a time day & night and great Ormond street were stumped as to why she was so unsettled. In the end they...
Hi All, First off, I'm very sorry to hear about your father-in-law, Alison, and your mother-in-law, Nikkie. I feel very badly that your families are going...
Hi everyone, Alison - so sorry to hear about Niall's dad, it must have been such a shock. We too are coping with the imminent loss of a loved one. Steve's...
Hi Guys, Didn't really want to put a downer on Christmas but ours was not the best. We lost Niall's dad to liver cancer on 20th December and he had only been...
Hi all, we all had a good christmas, in fact, this is the best Kristan has done in three years, she has not had any seizures since Dec. 13! I keep praying...
Hi Rachel, Yes, we did get those ornaments. I will send you one for free. Just let me know what your address is and I'll get it out to you. It's very small...
Hey Laura, Did you ever get those Christmas ornaments for Riley this year? I was wondering if we could purchase one. I am glad to see that your Christmas was...
Hi Everyone, I just looked at Harry's website and saw a message on his guest book. It was from Margie and said that Bianca passed away on the 14 th of ...
Hi Everyone! Hope you all had a wonderful holiday season. Ours was great! The girls were spoiled once again and Rylie was in a great mood Xmas day with...
thanks Margaret! Our family went down to Florida for Christmas, a gift from my husbands parents. We have opened presents for both of our boys twice now and we...
Hi Everyone, I just want to wish every one a Very Merry Christmas. Denis has another chest infection, so he's on antibiotics. Santa Claus gave him a new CD...
Hi there I didn’t know cooper was in hosp but Harry is I have also found the last web site entry was July – Isn’t Harry in hosp to do the drug ...
Hi All, I was just wondering if anyone had heard from Sammi(Cooper's mum) or Denise (Harry's mum). Last I heard they were both in hospital, I don't know if...
Hi Satnam, I'm in Roma Australia, so its the middle of summer. Yes, Den fits more in summer. Twice he's been flown to Brisbane (where our Neuro is) in summer...
Hi Margaret, it's not too cold here, it's more rainy and dark and windy, but I get cold real easy so I do find it cold. I'm sorry, I don't remember where you...
Hi Satnam, Denis is the same. When he is starting to come down with any illness his szs increase, then nearly stop while he is very ill. That is how I judge...
Hi everyone, I finally got a chance to get onto the computer, we all had colds. When Kristan catches a cold, she stops seizing. She is just getting over a...
HI Rachel, thanks for the info. I am afraid if I continue with vaccinations that it will make things worse. Take care, SAtnam ... making the seizures worsen....
Hi Nikkie, Kristan weighs 39 pounds and is on 1,687.50 mg of Keppra, this is the highest maximum dose for her weight. I think I have given you the correct...
Hi Laura we all must begin to think alike we have also brought Isaak 2 sets of rope lights that have a 8 changer setting on them we plan to wrap them around...
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