Guest guest Posted November 28, 2004 Report Share Posted November 28, 2004 Hello everyone, I'm a new member and wanted to know what rehab your children receive. My son is in a special school that offers rehab ex. ot speech, physio and other services. The problem is his diagnosis of mito has not been confirmed and it is only an impression ,so his school wants to stop his rehab until its confirmed 100%.What kind of rehab programs do most of you do with your children to keep up with muscle weakness. thank you edie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2004 Report Share Posted November 28, 2004 Hello everyone, I'm a new member and wanted to know what rehab your children receive. My son is in a special school that offers rehab ex. ot speech, physio and other services. The problem is his diagnosis of mito has not been confirmed and it is only an impression ,so his school wants to stop his rehab until its confirmed 100%.What kind of rehab programs do most of you do with your children to keep up with muscle weakness. thank you edie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 Each of us do different things with therapy depending on several factors. Some things that affect the decision is how affected the child is, how fatigued they get, availability, and desire or need for less/more interaction with therapy. Some feel therapy can get to be " too much " and need breaks. I sometimes feel that way and am glad we can take breaks whenever Asenath and Zipporrah are run down or it is just getting to hectic. We get therapy in two locations; home and at a local hospital rehab center. We go to the hospital for Physical Therapy, but stay at home for Speech/cognitive/oral-feeding Therapy and Occupational Therapy. Asenath has PT. 1 hr/wk, 2 hrs/wk OT , and 2 hr/wk SP/cog. and Zipporrah gets 1 hr/wk PT, 2 hrs/wk SP/cog/feeding therapy. Our girls tend to have many strokes that combine to regress them physically and mentally, thus the amount of therapy needed. They are unspecified Mito also, but due to the obvious damage, they are able to continue therapy. We are not going through a school therapy program though so this does make a difference. Schools can be hard to work with at times. I am sure others will have more to offer on that topic. If you are having trouble getting therapy, you should speak to your pediatrician or physiatrist and request they write the school to explain the need for therapy and the expectations of it. Hope this helps you some. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) ReHab Therapies > > > > Hello everyone, > I'm a new member and wanted to know what rehab your children > receive. My son is in a special school that offers rehab ex. ot > speech, physio and other services. The problem is his diagnosis of > mito has not been confirmed and it is only an impression ,so his > school wants to stop his rehab until its confirmed 100%.What kind of > rehab programs do most of you do with your children to keep up with > muscle weakness. > thank you > edie > > > > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2004 Report Share Posted November 29, 2004 Grace is two and a half and recieves weekly speech and OT. We have been referred to PT many of times, but for now we have declined to to a fear of over doing it. I think that next year when she is to start special needs preschool we will start PT, since she will be there anyways. Best wishes. Rock, jazz, country, soul more. Find the music you love on MSN Music! Quote Link to comment Share on other sites More sharing options...
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