Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Hi, my almost 2 yo daughter has been on ProEFA for a week now. Within a couple days of starting, she began moving her mouth in funny positions and making funny sounds and noises. Would this be considered good? She has always attempted to talk and babble w/ her mouth in a smile position. Now she is putting her mouth in different positions. But I have to say she looks funny and it doesn't look natural. Just wondering if anyone else has experienced this. Thanks, Traci, Mom to Kennedy 2 GDD, Apraxia, SID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Aloha Traci!! (Lucky you in Hawaii!) I remember when Tanner first started on Efalex, which is the formula most of us found to be the best before ProEFA was invented, that I posted to a list one week later that Tanner was going into corners and whispering sounds to himself. Just like you I asked if this is normal activity for an apraxic child because I thought it was kind of strange. I don't remember if anyone answered, however I do know that one week after that -so two weeks after starting the Efalex- is when Tanner said " lellow " for the first time. I posted that it was like Bambi when he learned to say " flower " and instead of saying flower - Tanner walked around looking for things to call " lellow " -he was just as excited as us to be talking!! What's most amazing about this is that prior to supplementation Tanner was in therapy 2 to 3 times a week one on one for half hour to 45 minute sessions for about 5 months and had learned in that time to blow bubbles, make more facial movements, say simple sounds like " ch " or " ooo " with lots of encouragement and animation -however he still was not able to take the " ch " and the " ooo " and put them together to say " choo " His only words essentially at 2 years 10 months prior to EFAs were " mmmm " and " ma " -and this was with lots of therapy. Just two weeks later was a world of difference. I don't know exactly why your child is moving her mouth in unusual positions, or groping -however to me any changes outside the norm when you start your child on the EFAs is a great sign that something is clicking and that the surge may be soon approaching. (Please let us know when you see the surge in speech in the next week or two!) Since I receive lots of calls about this -I wanted to list the most common changes in an apraxic or other speech disordered child on EFAs from what I've read and heard and seen. 1. Increase in babbling or attempts at sounds. 2. Increase in imitation. Changes also can be looked for in (what you see as positive or negative) sleep attention appetite focus behavior stools Next will come a breakthrough of something you were probably working on for a bit -so you will be excited but will think " Well -I don't want to get my hopes up we were working on that for awhile now -maybe it's just a coincidence " However after the second or third surge in a short period of time -and then another - you are pretty sure things are different and it's at this point the professionals and the rest of the family and your friends are noticing it too -maybe about two to three weeks now. OK -the next stage is pure elation and hope -you see the light and no longer feel as desperate and want to share this new information with everyone and anyone. As the months go by and your child continues to progress at a much more rapid rate -you may even start to doubt the original diagnosis -especially if you started EFA supplementation at two -and perhaps the SLP that diagnosed the apraxia who also was at first excited is starting to second guess if the original diagnosis was correct as well. Unless you have to stop the ProEFA (or other Essential Fatty Acid) and literally have the chance to see the regression of acquired speech and language skills, attempts, and changes in behavior like we did with Tanner (and/or have a chance to again witness the second surge when your child is put back on the EFAs) -that doubt will probably remain somewhere in your mind and in others around your child. So the " I told you that he would start talking when he was ready " comments should be expected of course. Up to this point is understandable to me -it's the point after this that is confusing to me, and perhaps not the best stage for our children and for raising awareness or having research done to find out what is happening to our children and why. Perhaps because we have truly hit a paradigm shift. " paradigm shift (pair uh dime shift) 1. a profound and irreversible change to a different model of behavior or perception. 2. an epiphany with staying power. 3. a sea change of such magnitude that it alters the course of all who pass through it. " As Dr. Agin states the EFAs actually appear to be in some ways " curing " the apraxic child -even those diagnosed with severe oral and verbal apraxia, hypotonia, sensory and behavioral issues. Especially those started at younger ages. The child on ProEFA or some other EFA formula's like it no longer fits the criteria of the classic definition of apraxia -and yet doesn't fit the classic perception of what a late talker is either. When this new group of parents reflect on the many (in most cases now two to three years) of intensive therapy - they appear to forget that years ago the apraxia diagnosis meant years and years of intensive therapy that went into and through school years -as many of the parents of older apraxic children can remind us of. For new parents on the list they even at times forget to mention the EFAs and only credit therapy or the therapist that happened to be with the child at the time -you would have to know them or check the archives to know that, so new to the list parents don't know. To read the list now a days it appears that you don't always need a knowledgeable, or experienced therapist to help your severely apraxic child. We all know that may be true some of the time -but to give that advice on a world wide list and leave out the rest of the details? Some of the parents become more focused on other everyday activities with their child and start to drift away from the support sources (for those who ask why there appears to be trouble with support groups in the US and outside the US now a days) I found it amazing that at the New Jersey Speech Hearing Association Conference that a higher than average number of the parents that attended had children that did not respond to ProEFA. Basically only parents that were still desperate for help for their child, or new parents showed up. Problem with this attitude is that unless your child is really up to speed on all aspects of speech and language, the support sources that helped in the beginning will still benefit your child today. ProEFA alone is not the only answer and until we know how and why it works we can't improve on it. My son Tanner will be six this June -is now able to talk back and forth and explain what he wants -order for himself at a restaurant and be understood by a stranger, and ask people their name or if they want to play a certain game and carry on a conversation with other children or adults. Most people don't know there is something " wrong " with his speech because he tends to keep most of his sentences shorter with words he is sure of -however he can talk in longer sentences here and there and use words that are new and harder to pronounce -and you'll hear the breakdown a bit more then. I too am very grateful to the therapists, teachers and doctors who have helped Tanner along the way. I am grateful for opportunities to learn more such as this weekend when I just learned so much from and all the experts at the NJSHA conference for social and academic or educational strategies to further help Tanner and my other son Dakota. And last but not at all least I too am very grateful to grouplists such as this one for it was on a grouplist like this that I first learned about EFAs and that they have helped other children with apraxia -if it wasn't for that -most of you today wouldn't know about it. Together we really can make a difference as long as we keep learning and sharing. (PS And on a final note -please do not just go by the name of the product which means nothing without a trademark -and it's hard to trademark EFA since it's a word anyone can use. ProEFA the product name is used by various companies -the formula is the only thing that matters -and in most cases it's the formula that contains various amounts of DHA and EPA with smaller amounts of GLA (Omega 3 and Omega 6) that we have seen works the best for our children. Most have found the Nordic Naturals ProEFA to be the best. Complete EFA sold at GNC is not at all the same formula as ProEFA which you can even see online -the Nordic Naturals line called Complete Omega Ultimate Omega is the commercial and slightly more expensive line than the ProEFA professional line -but the exact same formula. Again just check the formula dosages. And on a final note -for those that believe the ProEFA is stinky -go buy the Efalex or just about any other fish oil and compare -you'll never call ProEFA stinky again. I guess we all hope Roche manufactures their odorless and tasteless Omega 3 and Omega 6 product that I posted about a few weeks ago out to all of us soon though!!!) ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Thank you for everyone's reassuring comments! I have more great news! Last night after dinner my husband was in the kitchen and yelled " who wants sundaes? " Before anyone else could say anything my little quiet apraxia Kennedy raised her hand and yelled " me! " My husband said " ok Hunter (my 4 yo who doesn't stop talking) - what about you Kennedy? " " That was Kennedy!!! " , I said. Everyone was jumping up and down! The only words she says spontaneously is baby, titty (kitty), and baba for eveything else. Sometimes she will attempt to imitate or use signs if I request, but she never answers a question like that! She was so happy and pleased w/ herself. And this is only day 7 of ProEFA! Traci mom to Kennedy almost 2 yo GDD, Apraxia, SID > Hi, my almost 2 yo daughter has been on ProEFA for a week now. > Within a couple days of starting, she began moving her mouth in > funny positions and making funny sounds and noises. Would this be > considered good? She has always attempted to talk and babble w/ her > mouth in a smile position. Now she is putting her mouth in different > positions. But I have to say she looks funny and it doesn't look > natural. Just wondering if anyone else has experienced this. > > Thanks, Traci, Mom to Kennedy 2 GDD, Apraxia, SID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 > > Hi, my almost 2 yo daughter has been on ProEFA for a week now. > > Within a couple days of starting, she began moving her mouth in > > funny positions and making funny sounds and noises. Would this be > > considered good? She has always attempted to talk and babble w/ > her > > mouth in a smile position. Now she is putting her mouth in > different > > positions. But I have to say she looks funny and it doesn't look > > natural. Just wondering if anyone else has experienced this. > > > > Thanks, Traci, Mom to Kennedy 2 GDD, Apraxia, SID Hey Traci! its amber! I hope I am replying correctly. Anyhow, let me know if I am not. I just started crying when I read your post about Kennedy. That is so so so awesome. I pray that someday that might be Sammy. I am so excited for you guys. I still haven't talked to her doc about the proefa, but I have heard nothing but good things about it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 > > Hi, my almost 2 yo daughter has been on ProEFA for a week now. > > Within a couple days of starting, she began moving her mouth in > > funny positions and making funny sounds and noises. Would this be > > considered good? She has always attempted to talk and babble w/ > her > > mouth in a smile position. Now she is putting her mouth in > different > > positions. But I have to say she looks funny and it doesn't look > > natural. Just wondering if anyone else has experienced this. > > > > Thanks, Traci, Mom to Kennedy 2 GDD, Apraxia, SID Hey Traci! its amber! I hope I am replying correctly. Anyhow, let me know if I am not. I just started crying when I read your post about Kennedy. That is so so so awesome. I pray that someday that might be Sammy. I am so excited for you guys. I still haven't talked to her doc about the proefa, but I have heard nothing but good things about it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 Traci, That is such awesome news for your Kennedy, this is just the begining. A good Idea for you Now before you can't keep up with her NEW sounds words is to keep everything in a journal, it will be a good reference for DR.s Evals and just for your own personal reference of how many words she can say, and even ones she may not end up saying so well, she will eventually. Also I liked doing to track progress with his therapist. Great Job EFA's congrats Kennedy and continued jumping and cheering! Regards, Eileen mom to JAck almost 3 oral apraxia, sid and 17 months and takes pro-efa since 11 months. --- damom4000 <ahauskins@...> wrote: > > > > Hi, my almost 2 yo daughter has been on ProEFA > for a week now. > > > Within a couple days of starting, she began > moving her mouth in > > > funny positions and making funny sounds and > noises. Would this be > > > considered good? She has always attempted to > talk and babble w/ > > her > > > mouth in a smile position. Now she is putting > her mouth in > > different > > > positions. But I have to say she looks funny and > it doesn't look > > > natural. Just wondering if anyone else has > experienced this. > > > > > > Thanks, Traci, Mom to Kennedy 2 GDD, Apraxia, > SID > > Hey Traci! its amber! I hope I am replying > correctly. Anyhow, let > me know if I am not. I just started crying when I > read your post > about Kennedy. That is so so so awesome. I pray > that someday that > might be Sammy. I am so excited for you guys. I > still haven't > talked to her doc about the proefa, but I have heard > nothing but good > things about it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 Hey funny seeing you here! I came here a few weeks ago when I was looking for info on giving Kennedy the ProEFA. I found lots of info and support. I hope you do too. I have also seen posts from parents of children w/ seizure disorders who give their children ProEFA. So, if you have any questions about that aspect you might want to post here. Good luck, Traci > --- In @y..., " roddyt001 " <roddyt001@h...> wrote: > > Thank you for everyone's reassuring comments! I have more great > > news! Last night after dinner my husband was in the kitchen and > > yelled " who wants sundaes? " Before anyone else could say anything > my > > little quiet apraxia Kennedy raised her hand and yelled " me! " My > > husband said " ok Hunter (my 4 yo who doesn't stop talking) - what > > about you Kennedy? " " That was Kennedy!!! " , I said. Everyone was > > jumping up and down! The only words she says spontaneously is baby, > > titty (kitty), and baba for eveything else. Sometimes she will > > attempt to imitate or use signs if I request, but she never answers > > a question like that! She was so happy and pleased w/ herself. And > > this is only day 7 of ProEFA! > > > > Traci mom to Kennedy almost 2 yo GDD, Apraxia, SID Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2002 Report Share Posted October 25, 2002 Lora, Just want to say you must be a fabulous grandmother! I'm also curious how much your grandchild weighs. My son with apraxia is about 35 pounds and takes two capsules. Jody Quote Link to comment Share on other sites More sharing options...
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