Guest guest Posted May 16, 2011 Report Share Posted May 16, 2011 Hi ,We live in Olney, MD. Riley actually has alot of words--you can understand her about 75% of the time, although her speech certainly does not sound " normal " . When she talks, she almost sounds like she is hearing impaired. Her speech therapist has been working on R's, CH's and V's lately. She also does cranio-sacral therapy with her once a week. It has been a long road. We tried sign when she was little but she wasn't very cooperative. She had a dynamite, but she didn't want to use it-she preferred to write. She will be getting an iphone for next year when she starts middle school. christina To: polymicrogyria From: mspranger@... Date: Sun, 15 May 2011 14:44:45 -0400 Subject: RE: Therapies - CHRISTINA Hi - My son is almost 6 with BP PMG, where are you guys located? Does your daughter have many words? Just curious what types of things you've done with the speech therapist. www.danielspranger.com From: polymicrogyria [mailto:polymicrogyria ] On Behalf Of doyle531@... Sent: Sunday, May 15, 2011 12:19 PM To: polymicrogyria Subject: Re: Therapies - message to all Hi My 10yr old also has bilateral perisylvian PMG. Where do you live? She was diagnosed at 2. I got referrals for a speech therapist right away. She has had speech twice a week since then. Why are you on waitlists for therapies? Have you seen a neurologist? Our therapists have all been private. Sent from my Verizon Wireless BlackBerry Re: Therapies - message to all I'm grandma to is with bilateral perisylvian PMG. She is turning 3 in July. I am so frustrated as we seem to wait on endless list to start therapies. We had to fight long and hard to get a referral and eventual diagnosis from our peditrician. She just tried to tell us that her drooling was normal, her lack of speech was nothing to be concerned about.... The left side weakness we saw was invisible to a trained medical eye..... Grrr sorry for my rants. My daughter while calling again to see where we were on the list was called " dragon lady " by the medical staff for being persistent in pursuit of therapy. I'm a special education teacher and so we do our best and providing our own stimulation during our " wait time " . I would love a concise list of available therapies so that we can begin pursuit outside the local medical profession. I feel we are wasting precious time! I am curious has anybody used hyperbaric chamber therapy? Please let's pull together and organize resources for our kids! Tammy On May 15, 2011, at 8:02 AM, " kswinster " <kswinster@... <mailto:kswinster%40hotmail.com> > wrote: > Hi all > > The recent discussions have been really useful. Jenna, my 7 month old daughter has right sided PMG and is currently having a surgery assessment. She has severe cortical visual impairement (nothing in the left eye, recently started to pick up lights in the right), early signs of CP, global development delay and 15-20 seen seizures a day. > > We've started occupational and speach therpy and are due to begin speach and physio in June with the NHS. I'm paying a private physio every 5 weeks and hydrotherpy with physio for 20 mins every 2 weeks through a charity. > > I'll get the the reason for my message - We're due at the neurologists (Dr Ferrie at the LGI) a week on Fri and i'm compiling a list of therapies i've read about on here or on other sites. As there seem to be alot! Would you all be interested in creating a document on here listing the therapies we've tried, what for and how useful it was/is (maybe in one/two sentences). > > Whhat do yout think???? > > Katy, mummy to Jenna :-) > > Quote Link to comment Share on other sites More sharing options...
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