Hi All - I have copied and pasted the questionnaire into the e-mail below so I hope you can all read it?? Let me know if not. Laura you are right - I did it in...
Hi All, Laura has raised a couple of interesting issues in her questionnaire that I had not thought about, so what I propose to do is that if anyone can think ...
I have a question for everyone. Justin always shakes his head back and forth (as if he is saying no) and he has does done it since he was an infant.. Does...
molly did this for 2 mths adoctor said it was somthin she had done and liked and coulnt stop she was put on halperidol (a drug i didt mention in questionnaire...
Hi, Kristan did this also when she was a baby. We were told by the neuro it was a form of stimulation for her, but always thought something was bothering her,...
Hi all.  I just registered to participate in the National Epilepsy Walk in Washington DC on 3/28/09. I know many of you do not even live in the USA, but I...
Hi Becky, We live in Alaska, and would love to make it but it is quite a distance to Wahsington from here. I made he trip once by myself with a child to go to...
My gosh the fundo surgery sounds ok but the other blood catheter with 5 days on a ventilator I would be so scared Isaak wouldn’t come off it!! Explain to me...
Sarah, Micah is on a high volume of Dilantin. It has been his best drug and we have had a really hard time regulating it since he got sick with pneumonia this...
Rachael – that does explain it better Isaak would have trouble giving any blood out if he had to have t tests per week. Does Dilantin have a different...
Sarah, The other name for Dilantin is Phenytoin, or fosphenytoin. Phenytoin is found in our bodies and I guess having more has helped Micah to have some...
Hiya, it's interesting to hear you talking about temperature issues - Maddie's arms and legs are almost always cold, with one side being noticeably colder than...
HI all. Are your kids on Topomax? Justin is on Topomax and although I have not noticed any problems with his temperature yet, our Neurologist said that...
Hi all, V interested to hear about the temperature control (or lack of) with our kids. Niamh has what they call "temperature spikes" where she will be normal...
Hi Nikkie, As I was reading about Maddie I was reminded how it was for Micah this last year. We started stimulating him with normal glisserin suppositories....
Hi guys Sorry ive not been on here for a while. To be honest, some days its just too much of a painful reminder that i don't have my baby any more. Also i...
Hi Nikkie, we use prune juice with Kristan to keep her regular, she gets 20 ml in the morning and she goes on her own. Even before the got the feeding tube I...
Hi All, We used to give Rylie a suppository (for kids) and that worked very well. She had an anal fissure from pushing so hard and it just broke our hearts to...
Hi Everyone, I just wanted you all to know that Micah made it through the surgery. He spent one day in PICU. They took him off the ventalators around 5am...
Rachel - That's just brilliant news. I am so glad for you all that Micah has got through another challenge and even more pleased that he seems to be doing so...
Rachel, So happy to hear that Micah is doing well after the surgery. I also wanted to mention that the day after Rylie was born, the doctor that checks all...
Rachel, I am so glad to hear that Micah has come through all of the surgery so well. I too believe that God has his hand on your son as well as all of our...
Hi everyone. I have kind of a random question. Justin is 15 months and has only two bottom teeth. Has anyone else had this experience? Is there a...
... and has only two bottom teeth. Has anyone else had this experience? Is there a reason why in releation to MPEI or is Justin just extremely slow to get...
Hi Rebecca, Rylie was 22 months old when she passed away and she only had four teeth and not fully in (two top, two bottom). The others you could tell were...
Hi Everyone, Jocelyn is now 14months old and is almost constantly arching her back and screaming! This has been going on for months and months now and I have...
Justin sees a neuro at Boston Children's Hosptial (Boston, MA USA) and he currently has four patients with MPEI. We like him a lot and seems knowlegable with...
Hi Everyone, Does anyone happen to know of any good websites for buying special equipment? I am looking for seating equipment etc- at the moment if I am not...
Hi Rebecca, It must be something to do with the condition Den was very late getting teeth, but lost his baby teeth early. I think he was over 1 before he got...
Having problems with message search?
Fill out this form to ensure your group is one of the first to be migrated to the new message search system.
