Guest guest Posted March 4, 2004 Report Share Posted March 4, 2004 Hello Aimee Hang in there, this is a very slow process!!! At 26 months my son only had maybe three word approximations. He would use ii for hi & ii ii for night night & maa for almost everything else including me. We had not begun therapy at that point so he had no signs then. He too was a sweet & bright little boy but I could see the frustration starting about this time for him. We began speech therapy at 32 months of age, 2 times a week for 30 minutes with a very good therapist. But for months nothing!! I began giving one Pro EFA a day at the age of around 3 1/2. No, he didn't start talking in sentences like I would have liked but there were small improvements. He began attempting new sounds. He became more aware of his mouth & tongue. The only people who might have noticed these things in the beginning were his slp & myself. This all started about 3 1/2 weeks after beginning the ProEfa. was small for his age so I felt to stay at one would be fine, he is almost 6 now & weighs only 40 lbs. Others may want to comment on dosage for your little one. Keep giving him the ProEFA & maybe try to get his therapy increased to at least 2 times a week, more if you can. It will get better, now is in mainstream kindergarten & speaks in 5 -6 word sentences. He is about 65% understandable, maybe?? Everyone in the family understands him & his teacher understands him most of the time. His teacher has quite a few of the kids that are hard to understand. still has a long way to go but it is getting better. You are in the right place for help this list is great & keeps us all educated!! Tammy I. in FL mom to From: " jackandaim " <irishamc@...> Reply- Subject: [ ] Frustrated!! Date: Thu, 04 Mar 2004 03:40:25 -0000 _________________________________________________________________ Get a FREE online computer virus scan from McAfee when you click here. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2006 Report Share Posted December 28, 2006 Hi All, Hope you all had a blessed christmas and happy holiday. My dr is changing my meds from humira to rituxan. We are waiting on insurance authorization. Ive been waiting over a week now, i havent had a humira shot in 2 weeks and am starting to feel it. I am so sick of this disease. Nothing has helped, and i just see myself going downhill all the time. thanks for listening! Stacey in PA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2006 Report Share Posted December 29, 2006 I haven't heard of it...but good luck with it. Do you inject this also? I can't take the humira or enbrel either and I have two shots sitting in my frig. I feel like a junkie lusting after them. Joy Stacey Singer <hampie_100@...> wrote: Hi All, Hope you all had a blessed christmas and happy holiday. My dr is changing my meds from humira to rituxan. We are waiting on insurance authorization. Ive been waiting over a week now, i havent had a humira shot in 2 weeks and am starting to feel it. I am so sick of this disease. Nothing has helped, and i just see myself going downhill all the time. thanks for listening! Stacey in PA __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2008 Report Share Posted April 5, 2008 Hi - I can totally understand your frustration. It's tough dealing with tort and repo, it feels like it consumes your life. My son had tort and was in PT for about 2 months (from 2-4m old). I did most of the stretching myself and it was tough when he would just scream his head off. But it was worth it, because he's fine now. I don't know how severe Darcy's tort is, but I guess my son's was pretty mild, since it didn't take that much PT and he hasn't had any lingering effects (i've definitely heard of worse cases than his). If your husband doesn't feel comfortable doing the stretches, you should encourage him to help in other ways. I bet he would be great at stability ball work (are you using one? they're great for tort!) and tummy time play. They're just as important as the stretching to help with the tilt and muscle strength. Also, I have an older daughter and it was impossible not to go out with both children in tow. And my son was just too big/heavy for a front carrier. Have you tried the boppy noggin nest? http://www.amazon.com/Boppy-Noggin-Nest-Head-Support/dp/B00009K2YU Our PT recommended it and I really liked that it gave me the option of laying him down or keeping him in his carseat without putting pressure on his head. Plus it helped align his head straight up and down which also helps with the tort tilt. Hang in there! I know it's tough. Feel free to vent or ask questions whenever you feel like it. Good luck! Jake-19m (tort resolved/rt plagio/DOCBand 7 weeks) Jordan-4 > > Well, we have been repositioning for 6 weeks and doing tort PT for 4, > and my frustration is mounting. I have come to term with banding my > daughter, i have already been in touch with CT in DC, but the > tort..thats another thing altogether. I am the only one doing her > stretches, my husband is affraid hell hurt her,(men are not as gentle, > hmmm), sometimes i see progress, others i see none at all, she screams > when we do the aggressive stretches which I HAVE to do, but gosh it > hurts to see her in pain, and then the stretch is not as effective b/c > shes tense...ugh!! I am not very comfortable going out with both kids > b/c of having to keep her off her head and do stretchs at every diaper > change+. Also, I read online (a dangerous place) that she could always > have a little tilt??. Coping advise would be appreciated, somedays i > feel like im drowning in plagio and tort!! > > > Darcys mom > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2008 Report Share Posted April 8, 2008 Hi , I can definitely understand your frustration. We have been banded for almost 4 weeks. is 7.5 months, has tort and plagio and has been in PT for almost 4 months. We have the most success when we do her stretches first thing in the morning. (I try to do them about 3 times a day when I take off her band to dry her head, after naps) She is still sleepy and very therefore cooperative. Have you tried distracting toys, anything with lights and music. She loves the ring tones in our cell phones and the tv remote. Here is a link to her favorite "distracting toy" Good luck! Keep us posted. http://www.nextag.com/Princess-Spinning-Light-Up-78648513/prices-html?nxtg=1ebb50a1c052d-F2032A30E3D6096D , mom to 7.5 months, almost 4 weeks in DOC band Quote Link to comment Share on other sites More sharing options...
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