Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hello : My granddaughter, Lindsey who will be 2 May 10th, was diagnoised with PMG about a year ago. I help my daughter and son-in-law with her care as well as there 4 year old. I have become more familiar with medical terms than I would like to be. Ha! The only symptoms she had up until that time were developemental delays as well as high and low muscle tone in different areas of her body. Oh yes, she cried all the time due to acid reflux. The therapist, until Lindsey was diagnoised, thought it was CP except that in CP most of the times a body will have high or low muscle tone and it will remain but Lindsey's changes from time to time. This confused the physical therapist not ever hearing of PMG. As far as seizures go, Lindsey had an EEG done for seizures last May when she was 1 year old. At that time, there was no seizure activity. To this date, we don't see any signs of seizures but, the neurologist told us that she will always be at risk for them due to her diagnosis. Like Carole said, some children have them from birth, some later in life, and some escape them altogether. Addressing you question about physical therapy. Yes. Early intervention is essential. The sooner the better.We now know that the doctors in the neonatal unit advised Lindsey to start pt immediately. That message didn't get to her regular peditriation right away so we didn't get started till about 5 months. It is most definitely worth taking the time and effort to do this. I attribute all that she has gained to PT and her parents working with her as well. Lindsey receives physical therapy 2 times/wk, occupational therapy for her fine motor skills 1 time/wk, speech therapy 1 time/wk for feeding issues, and now a developemental therapist 1 time/wk. They come to my daughter's home because that is how the system works here in NW Indiana. Anyway, I hope this helped answer your questions. Good luck to all of you. Just take a day at a time and try not to look too far into the future since this is such a baffeling disorder. No one knows what to expect. Just enjoy her the same as you would if you knew nothing. There are alot of good things possible for ! Never give up hope. Blessings, Bonnie - grandmother to Lindsey Quote Link to comment Share on other sites More sharing options...
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