Guest guest Posted May 3, 2006 Report Share Posted May 3, 2006 ERika did e-stim when she was 3 yrs old. We did it for 3 weeks, 7 days a week w/Marcy Freed. It did hot help . HOWEVER, was trached at the time. THere was 1 other child trached as well in our session, i dont think it helped her either. THe other kids, that were already swallowing and eating small amounts by mouth improved. SO after thinking back about all of it I think if the child already knew how to swallow, it improved it. did not really even have a swallow. After realizing all of this, i did, last year buy her a vital stim unit and used it for a while. Then we got caught up in hip surgery etc and stopped. I saw it making improvements, however, very small. I think it may be time to try it agian. I was told when we got it that you needed to be consistant with using it. ie; 7 days a week, minimum 1 hour a day. there was controversy as to the " rest " time in between cycles. ie: 30 secs on 15 secs off, or longer on, shorter off. Cathie, mom to 10 yr CHARGEr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 The age of the child is not the indication of appropriate timing. Is the child ready to learn to swallow? What developmental stage is the child at: bilateral tongue movement, gag reflex all the items that would clue you into a child who is ready for more solid food. Then if you think the child is ready have an evaluation to see if the child will tolerate the electrodes. All this goes into knowing if the child is ready. Some are ready at 2 1/2 some much older. There is no right or wrong answer to this question. , Randy & Garland Goodwin ---- Meg Hefner wrote: ============= I got a call today from an OT who had questions about e-stim therapy for swallowing in kids with CHARGE. She wondered at what age children were treated. That hasn't been a topic on the list for quite a while. If any of you did e-stim for your kids, could you let me know how old your child was at the time and how successful you thought it was (completely, it helped, not at all)? You can either reply to the list or to me privately meg@... Thanks! Meg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 The age of the child is not the indication of appropriate timing. Is the child ready to learn to swallow? What developmental stage is the child at: bilateral tongue movement, gag reflex all the items that would clue you into a child who is ready for more solid food. Then if you think the child is ready have an evaluation to see if the child will tolerate the electrodes. All this goes into knowing if the child is ready. Some are ready at 2 1/2 some much older. There is no right or wrong answer to this question. , Randy & Garland Goodwin ---- Meg Hefner wrote: ============= I got a call today from an OT who had questions about e-stim therapy for swallowing in kids with CHARGE. She wondered at what age children were treated. That hasn't been a topic on the list for quite a while. If any of you did e-stim for your kids, could you let me know how old your child was at the time and how successful you thought it was (completely, it helped, not at all)? You can either reply to the list or to me privately meg@... Thanks! Meg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 I left off the most important piece of information about Garland. Garland had 5 sessions a week for 9 weeks (our drive was 1 hr one way). It is now 2 years later and he does not use his g-tube. Yes, he is totally oral feed! He still has problems with meats and raw veggies, however that is coming along also. Yes, well worth it for us. , Randy & Garland Goodwin ---- & Randy wrote: ============= The age of the child is not the indication of appropriate timing. Is the child ready to learn to swallow? What developmental stage is the child at: bilateral tongue movement, gag reflex all the items that would clue you into a child who is ready for more solid food. Then if you think the child is ready have an evaluation to see if the child will tolerate the electrodes. All this goes into knowing if the child is ready. Some are ready at 2 1/2 some much older. There is no right or wrong answer to this question. , Randy & Garland Goodwin ---- Meg Hefner wrote: ============= I got a call today from an OT who had questions about e-stim therapy for swallowing in kids with CHARGE. She wondered at what age children were treated. That hasn't been a topic on the list for quite a while. If any of you did e-stim for your kids, could you let me know how old your child was at the time and how successful you thought it was (completely, it helped, not at all)? You can either reply to the list or to me privately meg@... Thanks! Meg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 Hey, Meg! Libby just started VitalStim Therapy at Arkansas Children's Hospital this week. Next Tuesday, Libby will be 4 years old. We are doing 50-min. sessions 4 consecutive days a week with a total of 30 therapy days. Today was our 3rd day and we are already exhausted from the hour+ drive. Gross wife to Wesley and Mom to Madalyn and Libby (CHARGEr) e-stim for swallowing I got a call today from an OT who had questions about e-stim therapy for swallowing in kids with CHARGE. She wondered at what age children were treated. That hasn't been a topic on the list for quite a while. If any of you did e-stim for your kids, could you let me know how old your child was at the time and how successful you thought it was (completely, it helped, not at all)? You can either reply to the list or to me privately meg@... Thanks! Meg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 lesly e stim is a techique used for swallowing ive never tried it dont knwo if its done in aus ellen > > Hey, Meg! Libby just started VitalStim Therapy at Arkansas Children's > Hospital this week. Next Tuesday, Libby will be 4 years old. We are doing > 50-min. sessions 4 consecutive days a week with a total of 30 therapy > days. Today was our 3rd day and we are already exhausted from the hour+ > drive. > > Gross > wife to Wesley and Mom to Madalyn and Libby (CHARGEr) > > e-stim for swallowing > > I got a call today from an OT who had questions about e-stim therapy for > swallowing in kids with CHARGE. She wondered at what age children were > treated. That hasn't been a topic on the list for quite a while. If > any of you did e-stim for your kids, could you let me know how old your > child was at the time and how successful you thought it was (completely, > it helped, not at all)? You can either reply to the list or to me > privately meg@... > Thanks! > Meg > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 lesly e stim is a techique used for swallowing ive never tried it dont knwo if its done in aus ellen > > Hey, Meg! Libby just started VitalStim Therapy at Arkansas Children's > Hospital this week. Next Tuesday, Libby will be 4 years old. We are doing > 50-min. sessions 4 consecutive days a week with a total of 30 therapy > days. Today was our 3rd day and we are already exhausted from the hour+ > drive. > > Gross > wife to Wesley and Mom to Madalyn and Libby (CHARGEr) > > e-stim for swallowing > > I got a call today from an OT who had questions about e-stim therapy for > swallowing in kids with CHARGE. She wondered at what age children were > treated. That hasn't been a topic on the list for quite a while. If > any of you did e-stim for your kids, could you let me know how old your > child was at the time and how successful you thought it was (completely, > it helped, not at all)? You can either reply to the list or to me > privately meg@... > Thanks! > Meg > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 lesly e stim is a techique used for swallowing ive never tried it dont knwo if its done in aus ellen > > Hey, Meg! Libby just started VitalStim Therapy at Arkansas Children's > Hospital this week. Next Tuesday, Libby will be 4 years old. We are doing > 50-min. sessions 4 consecutive days a week with a total of 30 therapy > days. Today was our 3rd day and we are already exhausted from the hour+ > drive. > > Gross > wife to Wesley and Mom to Madalyn and Libby (CHARGEr) > > e-stim for swallowing > > I got a call today from an OT who had questions about e-stim therapy for > swallowing in kids with CHARGE. She wondered at what age children were > treated. That hasn't been a topic on the list for quite a while. If > any of you did e-stim for your kids, could you let me know how old your > child was at the time and how successful you thought it was (completely, > it helped, not at all)? You can either reply to the list or to me > privately meg@... > Thanks! > Meg > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 Karlee was 16. She had 26 sessions. It did help improve the strength of her swallow. The strength of her voice improved also. Her swallow studies show that she is safe. from IL (Karlee 18) e-stim for swallowing >I got a call today from an OT who had questions about e-stim therapy for > swallowing in kids with CHARGE. She wondered at what age children were > treated. That hasn't been a topic on the list for quite a while. If > any of you did e-stim for your kids, could you let me know how old your > child was at the time and how successful you thought it was (completely, > it helped, not at all)? You can either reply to the list or to me > privately meg@... > Thanks! > Meg > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 Karlee was 16. She had 26 sessions. It did help improve the strength of her swallow. The strength of her voice improved also. Her swallow studies show that she is safe. from IL (Karlee 18) e-stim for swallowing >I got a call today from an OT who had questions about e-stim therapy for > swallowing in kids with CHARGE. She wondered at what age children were > treated. That hasn't been a topic on the list for quite a while. If > any of you did e-stim for your kids, could you let me know how old your > child was at the time and how successful you thought it was (completely, > it helped, not at all)? You can either reply to the list or to me > privately meg@... > Thanks! > Meg > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2006 Report Share Posted May 4, 2006 Karlee was 16. She had 26 sessions. It did help improve the strength of her swallow. The strength of her voice improved also. Her swallow studies show that she is safe. from IL (Karlee 18) e-stim for swallowing >I got a call today from an OT who had questions about e-stim therapy for > swallowing in kids with CHARGE. She wondered at what age children were > treated. That hasn't been a topic on the list for quite a while. If > any of you did e-stim for your kids, could you let me know how old your > child was at the time and how successful you thought it was (completely, > it helped, not at all)? You can either reply to the list or to me > privately meg@... > Thanks! > Meg > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 Adele has done 2 rounds of VitalStim therapy, with mixed results. At 10 1/2 months, she had it every day for 2 weeks. Her swallow study did not show improvement but we noticed an AMAZING difference in her coughing/gagging episodes. She went from coughing every hour at night to sleeping 5-6 hours uninterrupted. We were sooooo excited about VitalStim and couldn't wait to do more. However, we had to wait several months for our local Children's Hospital to get the equipment, training, etc. (We had gone out-of- town for to try it.) She was about 14 months when we started again. This time we saw no improvement and probably some regression. Her coughing got worse and she had reflux problems (she has a Thal fundo). You cannot do VitalStim with uncontrolled reflux, so we stopped after about 2 weeks of therapy. We are not certain if VitalStim caused the reflux problems or not - but her reflux did improve after we stopped. We will probably try VitalStim again but not for a while. -- mom to Adele (almost 2) www.brandrup.com username: baby password: sugar > > I got a call today from an OT who had questions about e-stim therapy for > swallowing in kids with CHARGE. She wondered at what age children were > treated. That hasn't been a topic on the list for quite a while. If > any of you did e-stim for your kids, could you let me know how old your > child was at the time and how successful you thought it was (completely, > it helped, not at all)? You can either reply to the list or to me > privately meg@... > Thanks! > Meg > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2006 Report Share Posted May 5, 2006 I cough all the time when i sleep. This is interesting. I know i cant sleep over at my one grandma's place cause she wakes me up to give me caugh syrop cause i cough so much. I cough a lot at night. Im having a sleep study done eventiualy so maby they will catch that too. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 Meg - We did e-stim for Ethan for about 12 months from about 2 1/2 yrs to 3 1/2 yrs. We saw good results with the vital stim on, but not a lot of carryover when it was off. We also did it during that time for 4 x week for 3 weeks and then went for a swallow study. He didn't aspirate at first, but after 3-4 swallows, he had residual in his throat. After that point, he seemed disinterested in eating food so we stopped the vitalstim. In the next month, we are going to Milwaukee Feeding Clinic to see what they suggest we do next. Jody - mom to Ethan (almost 4 yrs - ChARGE) r wrote: I got a call today from an OT who had questions about e-stim therapy for swallowing in kids with CHARGE. She wondered at what age children were treated. That hasn't been a topic on the list for quite a while. If any of you did e-stim for your kids, could you let me know how old your child was at the time and how successful you thought it was (completely, it helped, not at all)? You can either reply to the list or to me privately meg@... Thanks! Meg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 Meg - We did e-stim for Ethan for about 12 months from about 2 1/2 yrs to 3 1/2 yrs. We saw good results with the vital stim on, but not a lot of carryover when it was off. We also did it during that time for 4 x week for 3 weeks and then went for a swallow study. He didn't aspirate at first, but after 3-4 swallows, he had residual in his throat. After that point, he seemed disinterested in eating food so we stopped the vitalstim. In the next month, we are going to Milwaukee Feeding Clinic to see what they suggest we do next. Jody - mom to Ethan (almost 4 yrs - ChARGE) r wrote: I got a call today from an OT who had questions about e-stim therapy for swallowing in kids with CHARGE. She wondered at what age children were treated. That hasn't been a topic on the list for quite a while. If any of you did e-stim for your kids, could you let me know how old your child was at the time and how successful you thought it was (completely, it helped, not at all)? You can either reply to the list or to me privately meg@... Thanks! Meg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 Meg - We did e-stim for Ethan for about 12 months from about 2 1/2 yrs to 3 1/2 yrs. We saw good results with the vital stim on, but not a lot of carryover when it was off. We also did it during that time for 4 x week for 3 weeks and then went for a swallow study. He didn't aspirate at first, but after 3-4 swallows, he had residual in his throat. After that point, he seemed disinterested in eating food so we stopped the vitalstim. In the next month, we are going to Milwaukee Feeding Clinic to see what they suggest we do next. Jody - mom to Ethan (almost 4 yrs - ChARGE) r wrote: I got a call today from an OT who had questions about e-stim therapy for swallowing in kids with CHARGE. She wondered at what age children were treated. That hasn't been a topic on the list for quite a while. If any of you did e-stim for your kids, could you let me know how old your child was at the time and how successful you thought it was (completely, it helped, not at all)? You can either reply to the list or to me privately meg@... Thanks! Meg Quote Link to comment Share on other sites More sharing options...
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