Hi Tanya, So happy to hear your good news. Love the name (especially the spelling of Maree).  Try and spoil yourself a bit! Hugs, Rebecca, Mary & family...
Congrats, congrats, congrats! That is such awesome news Tan, I'm so happy for you. Such a gorgeous name too. Joce will be a proud big sister. So, so pleased...
Tanya,  Congratulations on the birth of Lily Maree! Beautiful name. Give her a big kiss from Ireland! And well done you!  Angeline, Bryan and Calum xxx...
Hi Everyone, I just wanted to let you know that our beautiful 2nd child Lily Maree was born safely @ 6.38pm 13/11/09 weighing 7 pounds 1 oz, 50.5cm. We are...
... Freyja is on keppra,tegratol,ospolot & phenobarb.Very wise words & i bet you are right as Luke fought death so many times & to look at him being so skinny...
Hi Amy, I had contact with your mum Shirley a few weeks ago and she said that she would talk to you about joining the group. I am really glad you decided to - ...
Hi Amy where are you from – do you have any other children etc etc. Aaron and I have been married for 13 yrs we have Isaak 8 Torie 5 and Kayne (nearly 8...
Hi Sarah - It would be great if you could pdf scan it and I can put it on the Medical papers section of Niamh's site I know what you mean about waiting for...
What meds is she on again??? Stay strong – My theory is the children make their own decisions and it is out of our hands and we do as much for them as we can...
We were given it in Hosp when Kayne was seizuring – the doc’s found it and we asked for a copy I will try to scan it and e mail it as an attatchment maybe...
Hi Amy,  My daughter Ava had MPEI and microcephaly. Basically Ava's head circumference did not grow at the rate it should have after her birth. She...
... welcome to our group,i have 4 children 2 of which have MPEI,Luke is almost 13 & Freyja is 19mths. MPEI appears to range in severity & can have other...
hi everyone, thankyou for all of your responses re phenobarb,Freyja unfortunately is going down hill fast,i have increased the dose as we are out of options...
... you are a strong & amazing woman & give me the strength to cope with my oh so distressing life. you mentioned Ava being so pale & that brought back one of...
Just wondering if anyone out there has or knows of children with MPEI that are ventilator-dependent and/or have a history of craniosynistosis. My son Aaron has...
Hi Sarah,  Could you let me know the name of the article you read on MPEI published this year? I'd tried to google it but only got older articles...  ...
Hi,  We are still waiting for Ava's post mortem results so we are not certain about the actual cause of her death. It was most likely the pneumonia. ...
Hi Lee and everyone else, Katelyn takes 60mg phenobarb daily, and while it definitely sedated her for the first 4-6 weeks, her body is now used to it and she...
Hi Sarah, Joce has been on Dilantin for sometime with no major side effects. This has by far been the BEST drug for Jocelyn. When it reached a steady state she...
Hey there Lee, With Carlos, phenobarb was one of the first drugs that we tried and he was onlya few days old. From the beginning I knew it was no good,...
We have not yet tried phenobarb with Kayne – Isaak has never been on this as a regular med. Kayne does well with phenobarb as an emergency med. We have just...
Hi Lee, Joce Has only had Pheonbarb for periods of status. A big load which bombs her out for a few days and stops the seizures. Her docs didnt want it to be a...
Hi Lee, Kristan's experience with pheno was used as an emergency and given by IV, gave her a break and she slept for two days when the seizures were out of...
Hi Lee, My experience with phenobarb as emergency was very different from when it was used at a regular dose. As an emergency it knocked Niamh out for 2 days, ...
Hi Lee,  I have no words of wisdom for you I just wanted to echo your concerns. I had the very same worries about Ava and the amount of medication she was...
hey everyone, Freyja is having heaps of little fits during the day & quite a few of the bigger ones at night during sleep. the drs want to increase her...
... Hello again, that is such great news,i love great news when it comes to our precious ones,Freyja is just starting to smile,its so exciting to have such a...
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