Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 CONGRATULATIONS!! WAHOO!! WOW!!! YAY!!! Trish you were just under the wire as the second on the rooftop today! Just a quick word of advice to save you a few bucks. The " Jr. " fish oils are great if you want to teach your child how to swallow the capsules or provide a 1/2 dosage of what most of us as a group use (the ProEFA -the regular sized) There is no such thing as " children's fish oil " since..well fish oil is fish oil. The Jr version has a cuter bottle -I'll give it that! The ProEFA Jr. and the ProEFA bottles both have the same amount of capsules and are around the same price -but you have to use 2 of the Jr. to equal one of the regular. If you do the math you'll see what I mean in price. (hint -twice as expensive) And Trish you really didn't go as high as you may think in dosage. Even though you " doubled " the dosage on the bottle (2 per day which equals 1 of the ProEFA) by doubling to 4 you merely went to 2 capsules of the ProEFA a day which is considered by all the researchers from The First Apraxia Conference to be " extremely conservative " http://www.cherab.org/news/scientific.html -and 2 ProEAF a day is pretty typical of what many use in this group before has raised awareness of how higher dosages may work even better and faster as they have for her child. About dosage and following what is on the bottle -no disrespect to anyone who believes that is to be followed since I too once thought of course that they put actual dosages on the bottles. Until a particular brand of EFA has clinical research behind it -they are not allowed to put more than the one to two capsules a day dosage I was told by Nordic Naturals. This is why brands like EyeQ and Efalex have way way way higher dosages on the bottle - because...that's what is typically used in research and those two brands have been used in research. Because of this group and the low dosages we've always have used the small amount of research done with ProEFA was with the low dosage of one to two capsules a day. When talks about the higher dosage that is more typical of what a researcher would use. As a group we've always stuck to the one or two a day to start as it says in this EFA 101 archive message http://www.speech-express.com/boards/viewtopic.php?t=620 -but I'd follow 's new lead on this and I applaud her as a brilliant Mom who brings much insight and medical knowledge to this group to help remove the dreaded " fear of fish oil " that most of the population seems to suffer from. (I mean really as I always say if you blot oil off a slice a pizza your kid would have consumed more pizza oil then the amount of fish oil we give them!) So Trish -take the " dosage " on the bottle with a grain of salt and know that once there is clinical research on ProEFA that uses higher dosages (ProEFA is the professional line of the Omega 3 6 9) that the dosage on the bottle will change -but that the proof of what works best for your child you are the best judge of right now. And one more word of advice -instead of going to 3 capsules of the ProEFA (which would be 6 of the Jr. brand you are using and at that point you will be going through a bottle like every 2 weeks vs. 4 weeks for the almost same priced ProEFA) Add one ProEPA to the 2 ProEFA you are already currently using right now (again 4 of the Jr = 2 of the ProEFA) I don't know what the ProEPA is called in the commercial brand -perhaps someone else knows. Again cheers YAY! to you and your little one! I know just how you feel! (hope and happiness and the light at the end of the tunnel) ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Just wondering, what is pro-epa and at what point do you add that to Pro-efa. What results have been seen? Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Congrats!! I am happy to hear of her progress, we as parents appreciate little things they do that other parents don't even realize comes natural. How long did the cranky period last out of curiousity? [ ] WOW!!! JACKIE IS DOING AWESOME!!!! Hi everyone, Just wanted to thank everyone and give a little update on Jackie. Wow what an awesome week we have had. Jackie is 34 months old. She has not been diagnosed, but is possibly appraxic. She has been in ST since around 15 months. Very, very slow progress. I started her on Omega 3,6, 9 Junior one month ago. In december she had approximately 50 word " APPROXIMATIONS " (not understood by many). A month ago I started giving her 2 of the omegas. I saw a little improvement. I posted and asked if I was giving enough. THANK YOU CLAUDIA. I have to say, I was a little nervous about doubling the dosage, but I went for it. OH MY! When I was putting her to bed last night, without even realizing it I said " OK Jackie, night night time, YOU HAVE TO STOP TALKING! " And then I cryed my eyes out. NEVER, EVER, did I think I would say that to her. She likes to bring a book to bed with her. She had one of the No books. She kept saying, NO !!! No tus dat! (Dont touch that) Night essei (night Jessie) her siser. Night night mama...Mornin (I always say see you in the morining). This is just amazing. Also I see improvements with her Physically. Is this possible? She is now running and jumping much better than prior to the Omegas. I see improvements in all areas. I did however see a fussy point. First two she was crying alot at bed time. But it stopped. Anyway, I just wanted to thank all, and thank Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 > > CONGRATULATIONS!! WAHOO!! WOW!!! YAY!!! > > Trish you were just under the wire as the second on the rooftop today! > > Just a quick word of advice to save you a few bucks. The " Jr. " fish > oils are great if you want to teach your child how to swallow the > capsules or provide a 1/2 dosage of what most of us as a group use > (the ProEFA -the regular sized) > > There is no such thing as " children's fish oil " since..well fish oil > is fish oil. The Jr version has a cuter bottle -I'll give it that! > > The ProEFA Jr. and the ProEFA bottles both have the same amount of > capsules and are around the same price -but you have to use 2 of the > Jr. to equal one of the regular. If you do the math you'll see what > I mean in price. (hint -twice as expensive) > > And Trish you really didn't go as high as you may think in dosage. > Even though you " doubled " the dosage on the bottle (2 per day which > equals 1 of the ProEFA) by doubling to 4 you merely went to 2 > capsules of the ProEFA a day which is considered by all the > researchers from The First Apraxia Conference to be " extremely > conservative " http://www.cherab.org/news/scientific.html -and 2 ProEAF a > day is pretty typical of what many use in this group before > has raised awareness of how higher dosages may work even better and > faster as they have for her child. > > About dosage and following what is on the bottle -no disrespect to > anyone who believes that is to be followed since I too once thought > of course that they put actual dosages on the bottles. Until a > particular brand of EFA has clinical research behind it -they are > not allowed to put more than the one to two capsules a day dosage I > was told by Nordic Naturals. This is why brands like EyeQ and > Efalex have way way way higher dosages on the bottle - > because...that's what is typically used in research and those two > brands have been used in research. Because of this group and the > low dosages we've always have used the small amount of research done > with ProEFA was with the low dosage of one to two capsules a day. > > When talks about the higher dosage that is more typical of > what a researcher would use. As a group we've always stuck to the > one or two a day to start as it says in this EFA 101 archive message > http://www.speech-express.com/boards/viewtopic.php?t=620 -but I'd > follow 's new lead on this and I applaud her as a brilliant > Mom who brings much insight and medical knowledge to this group to > help remove the dreaded " fear of fish oil " that most of the > population seems to suffer from. (I mean really as I always say if > you blot oil off a slice a pizza your kid would have consumed more > pizza oil then the amount of fish oil we give them!) > > So Trish -take the " dosage " on the bottle with a grain of salt and > know that once there is clinical research on ProEFA that uses higher > dosages (ProEFA is the professional line of the Omega 3 6 9) that > the dosage on the bottle will change -but that the proof of what > works best for your child you are the best judge of right now. > > And one more word of advice -instead of going to 3 capsules of the > ProEFA (which would be 6 of the Jr. brand you are using and at that > point you will be going through a bottle like every 2 weeks vs. 4 > weeks for the almost same priced ProEFA) Add one ProEPA to the 2 > ProEFA you are already currently using right now (again 4 of the Jr > = 2 of the ProEFA) I don't know what the ProEPA is called in the > commercial brand -perhaps someone else knows. > > Again cheers YAY! to you and your little one! I know just how you > feel! (hope and happiness and the light at the end of the tunnel) > > ===== > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Hi there! Jackies cranky stage, was only at night and only lasted about a week. Not really sure if the fish oil had anything to do with it. Could have been just her trying to get out of crib!!! Good Luck to you! Trish > > Congrats!! I am happy to hear of her progress, we as parents appreciate little things they do that other parents don't even realize comes natural. How long did the cranky period last out of curiousity? > > [ ] WOW!!! JACKIE IS DOING AWESOME!!!! > > > Hi everyone, > > Just wanted to thank everyone and give a little update on Jackie. > Wow what an awesome week we have had. Jackie is 34 months old. She > has not been diagnosed, but is possibly appraxic. She has been in ST > since around 15 months. Very, very slow progress. I started her on > Omega 3,6, 9 Junior one month ago. In december she had approximately > 50 word " APPROXIMATIONS " (not understood by many). > A month ago I started giving her 2 of the omegas. I saw a little > improvement. I posted and asked if I was giving enough. THANK YOU > CLAUDIA. I have to say, I was a little nervous about doubling the > dosage, but I went for it. OH MY! When I was putting her to bed > last night, without even realizing it I said " OK Jackie, night night > time, YOU HAVE TO STOP TALKING! " And then I cryed my eyes out. > NEVER, EVER, did I think I would say that to her. She likes to bring > a book to bed with her. She had one of the No books. She kept > saying, NO !!! No tus dat! (Dont touch that) Night essei > (night Jessie) her siser. Night night mama...Mornin (I always say > see you in the morining). This is just amazing. Also I see > improvements with her Physically. Is this possible? She is now > running and jumping much better than prior to the Omegas. I see > improvements in all areas. I did however see a fussy point. First > two she was crying alot at bed time. But it stopped. Anyway, I just > wanted to thank all, and thank Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 I am so glad to hear this good news. I am sure that my son is not the only one out there. There is something to this - and there has got to be a link to the underlying mechanism of disease. But for now, all we have is the information we are sharing among ourselves. I will tell you, I went against my decision to not increase dosing any further because I thought maybe we were about as high as we could go, but then added a second capsule of EPA at night. (I was thinking of how many teaspoons of " oil " go into french fries and friend food that we don't blink about - even though its not good for us). Now we are giving 1/2 tsp (omega 3/6/9) 3 times a day plus a pro-EPA capsule in the am and pm. Yet another surge. We are getting 5 WORD SENTENSES!!! Spontaneous new sentence combinations (in addition to him trying to repeat everything we say). My SLP is very impressed at how well he is doing in such a short time. Its amazing. But you heard me mention before that the biggest change we saw initially was improved balance and coordination. He still falls more than a child his age should - but only a couple of times a day (at the most) as opposed to a couple of times an hour. Its very promising. - [ ] WOW!!! JACKIE IS DOING AWESOME!!!! Hi everyone, Just wanted to thank everyone and give a little update on Jackie. Wow what an awesome week we have had. Jackie is 34 months old. She has not been diagnosed, but is possibly appraxic. She has been in ST since around 15 months. Very, very slow progress. I started her on Omega 3,6, 9 Junior one month ago. In december she had approximately 50 word " APPROXIMATIONS " (not understood by many). A month ago I started giving her 2 of the omegas. I saw a little improvement. I posted and asked if I was giving enough. THANK YOU CLAUDIA. I have to say, I was a little nervous about doubling the dosage, but I went for it. OH MY! When I was putting her to bed last night, without even realizing it I said " OK Jackie, night night time, YOU HAVE TO STOP TALKING! " And then I cryed my eyes out. NEVER, EVER, did I think I would say that to her. She likes to bring a book to bed with her. She had one of the No books. She kept saying, NO !!! No tus dat! (Dont touch that) Night essei (night Jessie) her siser. Night night mama...Mornin (I always say see you in the morining). This is just amazing. Also I see improvements with her Physically. Is this possible? She is now running and jumping much better than prior to the Omegas. I see improvements in all areas. I did however see a fussy point. First two she was crying alot at bed time. But it stopped. Anyway, I just wanted to thank all, and thank Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Dear Trish, So it seems now you are dosing at 4 omega 3/6/9 juniors? That's a teaspoon a day. Push up the dose further - that's still not much. Try giving it twice a day for 2 weeks, then add a pro-EPA. We saw the biggest move towards " normal " when EPA was added. ph yelled out to his sister last night " Nana (for na) GO TO BED " - clear as day, when we heard her still chatting after bedtime. It was beautiful. Honestly, this response to supplements is nothing short of amazing. - [ ] WOW!!! JACKIE IS DOING AWESOME!!!! Hi everyone, Just wanted to thank everyone and give a little update on Jackie. Wow what an awesome week we have had. Jackie is 34 months old. She has not been diagnosed, but is possibly appraxic. She has been in ST since around 15 months. Very, very slow progress. I started her on Omega 3,6, 9 Junior one month ago. In december she had approximately 50 word " APPROXIMATIONS " (not understood by many). A month ago I started giving her 2 of the omegas. I saw a little improvement. I posted and asked if I was giving enough. THANK YOU CLAUDIA. I have to say, I was a little nervous about doubling the dosage, but I went for it. OH MY! When I was putting her to bed last night, without even realizing it I said " OK Jackie, night night time, YOU HAVE TO STOP TALKING! " And then I cryed my eyes out. NEVER, EVER, did I think I would say that to her. She likes to bring a book to bed with her. She had one of the No books. She kept saying, NO !!! No tus dat! (Dont touch that) Night essei (night Jessie) her siser. Night night mama...Mornin (I always say see you in the morining). This is just amazing. Also I see improvements with her Physically. Is this possible? She is now running and jumping much better than prior to the Omegas. I see improvements in all areas. I did however see a fussy point. First two she was crying alot at bed time. But it stopped. Anyway, I just wanted to thank all, and thank Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Trish or , Can you give me the exact brand you are using? Also what is the proper dose and how much does Jackie weigh. Thanks Mark [ ] WOW!!! JACKIE IS DOING AWESOME!!!! Hi everyone, Just wanted to thank everyone and give a little update on Jackie. Wow what an awesome week we have had. Jackie is 34 months old. She has not been diagnosed, but is possibly appraxic. She has been in ST since around 15 months. Very, very slow progress. I started her on Omega 3,6, 9 Junior one month ago. In december she had approximately 50 word " APPROXIMATIONS " (not understood by many). A month ago I started giving her 2 of the omegas. I saw a little improvement. I posted and asked if I was giving enough. THANK YOU CLAUDIA. I have to say, I was a little nervous about doubling the dosage, but I went for it. OH MY! When I was putting her to bed last night, without even realizing it I said " OK Jackie, night night time, YOU HAVE TO STOP TALKING! " And then I cryed my eyes out. NEVER, EVER, did I think I would say that to her. She likes to bring a book to bed with her. She had one of the No books. She kept saying, NO !!! No tus dat! (Dont touch that) Night essei (night Jessie) her siser. Night night mama...Mornin (I always say see you in the morining). This is just amazing. Also I see improvements with her Physically. Is this possible? She is now running and jumping much better than prior to the Omegas. I see improvements in all areas. I did however see a fussy point. First two she was crying alot at bed time. But it stopped. Anyway, I just wanted to thank all, and thank Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 No one knows the " right " or exact dose. It may be that the ideal dose and ratio will vary from child to child. I can tell you what we are doing, but that is based on one child, and the dramatic surges we saw with each increase in dosing. These are doses much higher than previously recommended - so all I can tell you is that is what we are using, and you have to make your own decision. I believe higher doses are safe, but you have to understand that there really is no information or safety data out there. For us, with every surge in speech and coordination, I am wondering just how normal we can make him with increasing doses. But we are totally in uncharted waters here. I can also tell you that it seems that there are other kids out there like ph, who are experiencing amazing improvements by higher daily doses and multiple daily doses. It seems that it doesn't work for everyone - but for those of you who see what I'm seeing - it feels like a miracle. Given that the biggest improvement came with adding pro-EPA - maybe its not worth " waiting 6 months until there is a clear plateau " to see just how much benefit can come from this. I still think its good to go slowly like increasing the dose every 2 weeks to see if you notice changes, just so you know if its helping. But I also can't help but wonder that in kids who saw no improvement with a trial of 1/2 tsp EFA a day or less, whether a higher dose or higher EPA ratio would have made the difference. I can also tell you that I am now having CONVERSATIONS with my 2.5 year old. I was praying for clear 2 and 3 word sentence at Christmas, and back in august we had 3 word approximations and lots of grunting or silence, and a child who fell down and ran into the walls constantly (several times an hour). He is still hard to understand at times, but we are getting a great deal more clarity once EPA was added. He is negotiating stairs and falls down maybe 2-3 times a day now, and usually avoids the walls. He is jumping (not well yet), and running and climbing. Our current dosing (from Nordic naturals - bought on-line). 1/2 teaspoon of omega 3/6/9 (which is the same as Pro-EFA, but cheaper) plus one EPA capsule squeezed in and mixed, given 3 times a day. So the total he is getting is about 3/4 tsp of fish oil with a very high EPA ratio. There is about 1 gram total of omegas in each adult-size capsule...so this translates to 3 grams, 3 times a day for a total of 9 grams a day - which translates to 250 mg/kg/dose in my 12 kg boy. The main thing I've been worried about is the increased risk of bleeding (just like giving aspirin)...my son has a chronic petechiae condition (etiology unknown) so we are worried he's already at increased risk for bleeding. We have seen no worsening of his petechiae, and when he skins his knee he bleeds (and stops bleeding) like any other kid. I still don't feel like we've maximized the omega benefits in my son. But we are going to keep him at this dose for a while and see how it goes. But so far I like what I'm seeing. - [ ] WOW!!! JACKIE IS DOING AWESOME!!!! Hi everyone, Just wanted to thank everyone and give a little update on Jackie. Wow what an awesome week we have had. Jackie is 34 months old. She has not been diagnosed, but is possibly appraxic. She has been in ST since around 15 months. Very, very slow progress. I started her on Omega 3,6, 9 Junior one month ago. In december she had approximately 50 word " APPROXIMATIONS " (not understood by many). A month ago I started giving her 2 of the omegas. I saw a little improvement. I posted and asked if I was giving enough. THANK YOU CLAUDIA. I have to say, I was a little nervous about doubling the dosage, but I went for it. OH MY! When I was putting her to bed last night, without even realizing it I said " OK Jackie, night night time, YOU HAVE TO STOP TALKING! " And then I cryed my eyes out. NEVER, EVER, did I think I would say that to her. She likes to bring a book to bed with her. She had one of the No books. She kept saying, NO !!! No tus dat! (Dont touch that) Night essei (night Jessie) her siser. Night night mama...Mornin (I always say see you in the morining). This is just amazing. Also I see improvements with her Physically. Is this possible? She is now running and jumping much better than prior to the Omegas. I see improvements in all areas. I did however see a fussy point. First two she was crying alot at bed time. But it stopped. Anyway, I just wanted to thank all, and thank Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 where can i get proepa?? Isn't it the same as efa?? <claudiamorris@...> wrote: Dear Trish, So it seems now you are dosing at 4 omega 3/6/9 juniors? That's a teaspoon a day. Push up the dose further - that's still not much. Try giving it twice a day for 2 weeks, then add a pro-EPA. We saw the biggest move towards " normal " when EPA was added. ph yelled out to his sister last night " Nana (for na) GO TO BED " - clear as day, when we heard her still chatting after bedtime. It was beautiful. Honestly, this response to supplements is nothing short of amazing. - [ ] WOW!!! JACKIE IS DOING AWESOME!!!! Hi everyone, Just wanted to thank everyone and give a little update on Jackie. Wow what an awesome week we have had. Jackie is 34 months old. She has not been diagnosed, but is possibly appraxic. She has been in ST since around 15 months. Very, very slow progress. I started her on Omega 3,6, 9 Junior one month ago. In december she had approximately 50 word " APPROXIMATIONS " (not understood by many). A month ago I started giving her 2 of the omegas. I saw a little improvement. I posted and asked if I was giving enough. THANK YOU CLAUDIA. I have to say, I was a little nervous about doubling the dosage, but I went for it. OH MY! When I was putting her to bed last night, without even realizing it I said " OK Jackie, night night time, YOU HAVE TO STOP TALKING! " And then I cryed my eyes out. NEVER, EVER, did I think I would say that to her. She likes to bring a book to bed with her. She had one of the No books. She kept saying, NO !!! No tus dat! (Dont touch that) Night essei (night Jessie) her siser. Night night mama...Mornin (I always say see you in the morining). This is just amazing. Also I see improvements with her Physically. Is this possible? She is now running and jumping much better than prior to the Omegas. I see improvements in all areas. I did however see a fussy point. First two she was crying alot at bed time. But it stopped. Anyway, I just wanted to thank all, and thank Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 No - its actually a higher EPA concentration. YOu can order it directly from nordic naturals. Pro-eFA has a lower EPA to DHA ratio. Experience on this site suggests a 1:1 ratio of pro-EFA and Pro-EPA. We are at 2:1 now. I'm going to see how things go over the next few weeks before adjusting again - but wondering if it really is a greater need for the EPA in apraxia. I heard from my babysitter today that OT didn't go as well as usual " because he wouldn't stop talking " . I think that's great. - [ ] WOW!!! JACKIE IS DOING AWESOME!!!! Hi everyone, Just wanted to thank everyone and give a little update on Jackie. Wow what an awesome week we have had. Jackie is 34 months old. She has not been diagnosed, but is possibly appraxic. She has been in ST since around 15 months. Very, very slow progress. I started her on Omega 3,6, 9 Junior one month ago. In december she had approximately 50 word " APPROXIMATIONS " (not understood by many). A month ago I started giving her 2 of the omegas. I saw a little improvement. I posted and asked if I was giving enough. THANK YOU CLAUDIA. I have to say, I was a little nervous about doubling the dosage, but I went for it. OH MY! When I was putting her to bed last night, without even realizing it I said " OK Jackie, night night time, YOU HAVE TO STOP TALKING! " And then I cryed my eyes out. NEVER, EVER, did I think I would say that to her. She likes to bring a book to bed with her. She had one of the No books. She kept saying, NO !!! No tus dat! (Dont touch that) Night essei (night Jessie) her siser. Night night mama...Mornin (I always say see you in the morining). This is just amazing. Also I see improvements with her Physically. Is this possible? She is now running and jumping much better than prior to the Omegas. I see improvements in all areas. I did however see a fussy point. First two she was crying alot at bed time. But it stopped. Anyway, I just wanted to thank all, and thank Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 --- In , " " < I am mom to Mark, 39 mo old with significant global delays and suspician of apraxia. We started 1 capsul of PRO-EFA on his third birthday. I squeeze the liquid onto a spoon and he will take it just like that in the morinig. He was making many more noises fairly quick. Since then, he is still making the noises, but nothing new. I have been reading about PRO -EPA. I am wondering if I should try two pills a day and no PRO -EPA or one PRO-EFA and one PRO-EPA? Any suggestions. Mark currenlty saya no words at all. He is about 36 pounds. If I go to 2 pills, when should I give the second pro-efa? I cannot give it too late becuase it gives him ENERGY!! If I give pro-epa, can I give him the pro-efa and pro-epa at the same time? Thank you for any suggestions Quote Link to comment Share on other sites More sharing options...
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