Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 My son has DS and apraxia. He is 5 yrs old. I am taking him to a PROMPT slp and I have been given him PRO EFA for about a year. I started with 2 juniors dosage. Then I bought the adult version and gave him one capsule. 2 juniors equal one adult capsule. It is just easier for me to open one capsule instead of 2. I haven't seen much improvement. But I am still trying. I now have experimented with 2 adult dosages and there are no side effects. He is starting to say " I do " to a question. He is using his voice a little more. I am not sure if the different dosage helped but I am hanging in there as long as there are no side affects. I read the Late Talker and found that to be helpful too. Debbie [ ] down syndrome/apraxia I have a 3 1/2 year old boy with DS with a recent diagnosis of apraxia and just wanting to know if there are others of you like me out there and what level of intervention your child is getting. Is your child getting ESY? Also wondering if any of you have tried Pro EFA for your child and if you have had similar success stories as shared on the Cherub web site? If your child is taking the Pro EFA, what dosage and how did you determine the dosage. My son does not take pills and I was thinking about buying the kind that is not in the capsules and putting it in his juice. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 My son has MDS (50%). Does your child have a " sad " expression (indicating low tone in facial area) sometimes or all the time? If so, then the BECKMAN ORAL MOTOR method, helps with the tone in the face. You have to be consistent and repetitive (4-6 times per day, everyday) and it does help if you do the Beckman exercises first and then do a round of speech sounds. The temporary speech therapist that comes to our home for him on Mondays has taught me these and given me sheets to do when she is not here. I personally have heard him say CVCV combinations right after these exercies;so, I know they work. A spirometer may help if there is low tone in the trunk area, which would make it more difficult to exert the sounds. Can't help you on the fish oils because after a couple of months we discntinuedthem due to behavioral issues that did not quit. They may work for you, but I am assuming since there is genetic overexpression of the chromosome, then you might experience the same problem I did with them. I believe that maybe the difference with my child versus other cildren here, whose symptoms went away. > > I have a 3 1/2 year old boy with DS with a recent diagnosis of apraxia and just wanting to know if there are others of you like me out there and what level of intervention your child is getting. Is your child getting ESY? Also wondering if any of you have tried Pro EFA for your child and if you have had similar success stories as shared on the Cherub web site? If your child is taking the Pro EFA, what dosage and how did you determine the dosage. My son does not take pills and I was thinking about buying the kind that is not in the capsules and putting it in his juice. Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 I'd put it into yogourt or applesauce instead. If you put it in juice, most of it sticks to the side of the cup. Gelcaps are more stable. Just use a push pin to prick open the capsule and squeeze it (i've found that i give the gelcap 1 good squeeze, release, then squeeze the rest out. Alot less waste that way) i started my son on 2 caps PROEFA, and 1 cap PROEPA sandy ________________________________ From: thomastara34 <thomastara34@...> Sent: Tuesday, April 7, 2009 1:35:16 AM Subject: [ ] down syndrome/apraxia I have a 3 1/2 year old boy with DS with a recent diagnosis of apraxia and just wanting to know if there are others of you like me out there and what level of intervention your child is getting. Is your child getting ESY? Also wondering if any of you have tried Pro EFA for your child and if you have had similar success stories as shared on the Cherub web site? If your child is taking the Pro EFA, what dosage and how did you determine the dosage. My son does not take pills and I was thinking about buying the kind that is not in the capsules and putting it in his juice. Thanks __________________________________________________________________ Get the name you've always wanted @ymail.com or @rocketmail.com! Go to http://ca.promos./jacko/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 We used to put in applesauce. We pierced the gel cap twice. (One hole to express and one hole to vent. That way it does not explode everywhere.) We opened the little individual applesauces and squeezed it onto a spoon of applesauce from the cup. Then gave him the rest to eat on his own. That usually worked. (Plus we used fish oil caps that were ercury free and fishy taste-free.) > > I'd put it into yogourt or applesauce instead. If you put it in juice, most of it > sticks to the side of the cup. > > Gelcaps are more stable. Just use a push pin to prick open the capsule and squeeze > it (i've found that i give the gelcap 1 good squeeze, release, then squeeze the rest out. Alot > less waste that way) > > i started my son on 2 caps PROEFA, and 1 cap PROEPA > > sandy > > > > > ________________________________ > From: thomastara34 <thomastara34@...> > > Sent: Tuesday, April 7, 2009 1:35:16 AM > Subject: [ ] down syndrome/apraxia > > > I have a 3 1/2 year old boy with DS with a recent diagnosis of apraxia and just wanting to know if there are others of you like me out there and what level of intervention your child is getting. Is your child getting ESY? Also wondering if any of you have tried Pro EFA for your child and if you have had similar success stories as shared on the Cherub web site? If your child is taking the Pro EFA, what dosage and how did you determine the dosage. My son does not take pills and I was thinking about buying the kind that is not in the capsules and putting it in his juice. Thanks > > > > > > __________________________________________________________________ > Get the name you've always wanted @ymail.com or @rocketmail.com! Go to http://ca.promos./jacko/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2009 Report Share Posted April 7, 2009 -Debbie, Just curious if you are in GA getting PROMPT? And if so, do you mind me asking what location in GA. I have a list (I think I posted once here), but no PROMPT therapists were close to my area. Actually, no speech therapists are even close to my area. -- In , Debra King <dking001@...> wrote: > > My son has DS and apraxia. He is 5 yrs old. I am taking him to a > PROMPT slp and I have been given him PRO EFA for about a year. I > started with 2 juniors dosage. Then I bought the adult version and gave > him one capsule. 2 juniors equal one adult capsule. It is just easier > for me to open one capsule instead of 2. I haven't seen much > improvement. But I am still trying. I now have experimented with 2 > adult dosages and there are no side effects. He is starting to say " I > do " to a question. He is using his voice a little more. I am not sure > if the different dosage helped but I am hanging in there as long as > there are no side affects. I read the Late Talker and found that to be > helpful too. > > Debbie > > [ ] down syndrome/apraxia > > I have a 3 1/2 year old boy with DS with a recent diagnosis of apraxia > and just wanting to know if there are others of you like me out there > and what level of intervention your child is getting. Is your child > getting ESY? Also wondering if any of you have tried Pro EFA for your > child and if you have had similar success stories as shared on the > Cherub web site? If your child is taking the Pro EFA, what dosage and > how did you determine the dosage. My son does not take pills and I was > thinking about buying the kind that is not in the capsules and putting > it in his juice. Thanks > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 , I live in New Jersey. I looked through the phone book and just asked if they were PROMPT slp's over the phone. I found one 15min from my house and I am very happy with her. You may have to look around for one. She uses Kaufman cards also and works very well with him. Perhaps someone from early intervention can help you. Debbie [ ] down syndrome/apraxia > > I have a 3 1/2 year old boy with DS with a recent diagnosis of apraxia > and just wanting to know if there are others of you like me out there > and what level of intervention your child is getting. Is your child > getting ESY? Also wondering if any of you have tried Pro EFA for your > child and if you have had similar success stories as shared on the > Cherub web site? If your child is taking the Pro EFA, what dosage and > how did you determine the dosage. My son does not take pills and I was > thinking about buying the kind that is not in the capsules and putting > it in his juice. Thanks > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 I have a daughter with DS and apraxia also, almost 3 yrs old. We have been using the Nordic naturals 369 liquid. I put it in her bottle (still using) of milk. I am going to try the applesauce though cause she loves it. I have seen an improvement in her attention but it seems I need to increase little by little we are now at 3/4 tsp because she seems to go back to her little attention spans after a while. You ask about the level of intervention, but I am not sure what you are referring to. Can you clarify? Thanks, Ann > > I have a 3 1/2 year old boy with DS with a recent diagnosis of apraxia and just wanting to know if there are others of you like me out there and what level of intervention your child is getting. Is your child getting ESY? Also wondering if any of you have tried Pro EFA for your child and if you have had similar success stories as shared on the Cherub web site? If your child is taking the Pro EFA, what dosage and how did you determine the dosage. My son does not take pills and I was thinking about buying the kind that is not in the capsules and putting it in his juice. Thanks > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2009 Report Share Posted April 8, 2009 Yes, we are trying to get my 2 year old (the one that mimics the 5 year-old) early intervention services so that maybe the five-year-old can use the same in-home speech therapist. We actualy have all of the Kaufman materials :0),but still cannot find a PROMPT therapist or ANY speech therapist that is willing or able to come to the home. For now, we have one for the next month and she is teaching me Beckman Oral Motor Exercises and bringing me a spirometer for him to use.She also said she would bring me the intro DVD to VitalStim. (YAY!!!) She does state she is also trained in that and it s very hard and expensive to get trained in it. We are hoping that even though my apraxic son is too old for early intervention that we can utilize the same therapst we are hoping to get for my younger son. > > > > My son has DS and apraxia. He is 5 yrs old. I am taking him to a > > PROMPT slp and I have been given him PRO EFA for about a year. I > > started with 2 juniors dosage. Then I bought the adult version and > gave > > him one capsule. 2 juniors equal one adult capsule. It is just easier > > for me to open one capsule instead of 2. I haven't seen much > > improvement. But I am still trying. I now have experimented with 2 > > adult dosages and there are no side effects. He is starting to say " I > > do " to a question. He is using his voice a little more. I am not sure > > if the different dosage helped but I am hanging in there as long as > > there are no side affects. I read the Late Talker and found that to be > > helpful too. > > > > Debbie > > > > [ ] down syndrome/apraxia > > > > I have a 3 1/2 year old boy with DS with a recent diagnosis of apraxia > > and just wanting to know if there are others of you like me out there > > and what level of intervention your child is getting. Is your child > > getting ESY? Also wondering if any of you have tried Pro EFA for your > > child and if you have had similar success stories as shared on the > > Cherub web site? If your child is taking the Pro EFA, what dosage and > > how did you determine the dosage. My son does not take pills and I was > > thinking about buying the kind that is not in the capsules and putting > > it in his juice. Thanks > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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