Hello, I was so happy to find this group (via a UK website on epilepsy). My six month old daughter was recently diagnosed with MPEI, and it has been really...
Hi Jennifer, I'm very sorry that you had to find out group but I think you will find that all of the parents here are very supportive and helpful. Our...
Jennifer, We live in Alaska where Micah was born 3 years ago June. We moved to Michigan to get "Better" help at Mott children's hospital. It took 1.5 years to...
Hi Jennifer, my daughter Kristan is 6 years old and was diagnosed with MPEI in 2003. We are in Victoria, BC, Canada. She was 4 1/2 months old when she...
Hi. I am glad you found this group. My son is 22 months and was diagnosed with MPEI last July, after 8 months of siezures, and three hopsitalizations. ...
I'm just wondering - Rylie never stopped breathing during her seizures. I do know of another epileptic syndrome that can cause a cessation in breathing called...
Hi Becky, Thank you for the kind email. Dr. Marsh was the one that I was referring to. I think that I will email him about Katelyn and see if he is receptive...
Hi Satnam, It is nice to connect with someone who is so close to Seattle. I appreciate you sharing your daughter's story. I am so happy to hear that her...
HI Jennifer,  Welcome to our group. I am sorry your daughter Katelyn has been diagnosed with MPEI. I am Nan to Rebecca who is almost 20 months old.  ...
Hi Jennifer, Welcome to the group:). My son den is 7 and will be 8 in July, he was dxd with epilepsy inOct 2001 and then with MPEI in March 2002. He too has...
Hi Jennifer, Kristan had strabismus (crossing of the eyes inward) before the seizures started and she was seen by a ped. opthalmologist a few weeks before the...
Hi Jennifer My daughter Niamh was born on June 2004 after a very long labour. She didnt cry on arrival and was a very sleepy baby. She started fitting at 7...
... i am so sorry to hear you going through what i have gone through with 2 of my children. my name is Lee & i have 4 children all who have had epilepsy & 2...
Hi Jennifer, Welcome to the group, I'm so glad you found us, having other parents to talk to has always been an absolute godsend for us, and I hope it is for...
Hello Jennifer, My name is Tanya and I am a mum to Jocelyn who is 19 months old. We live in Australia. Joce did not cry at birth and that alerted the docs that...
Hi everyone, Do any of your children have an over sensitive gag reflex? Do you know if this is part of the condition? Joce gags lately even when I slightly put...
HI Lee, How is the g tube going? Joce gets hers next Tues! Cant wait, I am sick of inserting the NGT 4 times a day! She is ripping it out. Has Freyja screaming...
hi Tan, the G tube is great!!bit nervous still (even though Luke has one) but it is soooo much easier & she looks even more beautiful now!. She is a little...
Hi Tan, Not sure about the gag reflex being over sensitive as we didn't really put much in her mouth, but Niamh did vomit a lot so maybe it was? As for her...
Hi Tan, I have to say that Rylie never had a period of screaming or arching. She did vomit a lot, though and would often gag if she was having a seizure. I...
Hi Tan, Kristan used to have an over sensitive gag reflex. In time, with my brushing her teeth and using toothette swabs after her Flovent it has improved and...
hi all,i cant believe we are only 16 days away from Lukes back op & he was up all night coughing & throwing up mucus.if we dont nip it in the bud they will...
Lee, We have always used promethazine and or benedryl to calm Micah's tummy. I hope that this helps. Hugs, Rachel To: MPEIparentsupportgroup@yahoogroups.com ...
Hello, Katelyn has been doing pretty good for the last week- and then the other night she woke up at 4am screaming. When I took her out of her crib she...
Hi Jennifer, Niamh used to have lots of gagging seizures. We caught a nasty one on video so I am going to try and attach a clip of it to see what you think? ...
... Luke is really sick,i think he may have a really bad chest infection so it looks like we may be off to hospital for some IV antibiotics.Freyja is really...
Hi Jennifer, That sounds like a normal Seizure for our boy Micah. Is Katelyn on anything for reflux? It is a typical issue for our babies. I am so sorry that...
Hi Jennifer, Maddie often has gagging seizures - when she was younger it happened with almost every seizure, now it is 3 or 4 times a day (about a quarter of...
Hi all, off to hospital on Thursday for Lukes back op,his chest has settled a little so hopefully the op will be done on Friday. I feel sick & aprehensive but...
Hi Lee, Will be thinking of you and Luke on Friday. I will say an extra prayer that the op goes well and recovery is smooth. Hugs Rebecca & Mary  ...
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