Posted By Posting
Oct 12, 2008
jarenemum
Mom to 26 month old baby girl. Born at 33+weeks. Severe GERD, dysphagia (even to saliva), central hypotonia. Unable to do MRI due to requirement for G.A. and intubation risks. Docs mentioned chin is on small side which does not help with swallow. Currently 10.6Kg and 83cm long. Able to sit independently, pull to sit and sit up on her own. Able to stand with support and pull/push to stand. Can cruise. Started to crawl on April 1st 09. Babbles a lot but not saying real words yet. On early intervention programme. Communicates with a lot of gestures and finger pointing. Very intelligent. Swallow study done on 11/9/08 shows no initiation of swallow but is allowed to continue with food tasting which she thoroughly enjoys. Second swallow study done in Jul 09 shows she can swallow 2 teaspoons out of 4 tea spoons of yoghurt given. But it shows some muscle coordination issues between oro motor, throat and sphincter which causes food to queue up prior to entering stomach. Feeds through nasal gastric tube. On 3 times a week private speech therapy with vital stim since June 09 and once a week Physio with local hospital. We practice with her everyday on our own which saw more progress. Couldn't get into our preferred special school for EIP due to lack of teachers and long queue for spaces. Am looking for alternatives now.
ECI Therapy and MSPI?
Dear all, can anyone tell me what ECI therapy for hypotonia or low muscle tone is about? and also what does MSPI stand for?
Oct 12, 2008
maiam
maia m - GERD. Nissen Fundoplication w/hiatal hernia repair.
Mom to
Son (10) GERD(aspiration pneumonias, apnea, tracheomalacia), Food allergy, Asthma
Daughter (6) GERD, Heart Murmur, Food Allergy, Asthma, Mold allergy
Do you mean early childhood intervention? Or another type of therapy? MSPI = milk and soy protein intolerance.
Oct 12, 2008
jarenemum
Mom to 26 month old baby girl. Born at 33+weeks. Severe GERD, dysphagia (even to saliva), central hypotonia. Unable to do MRI due to requirement for G.A. and intubation risks. Docs mentioned chin is on small side which does not help with swallow. Currently 10.6Kg and 83cm long. Able to sit independently, pull to sit and sit up on her own. Able to stand with support and pull/push to stand. Can cruise. Started to crawl on April 1st 09. Babbles a lot but not saying real words yet. On early intervention programme. Communicates with a lot of gestures and finger pointing. Very intelligent. Swallow study done on 11/9/08 shows no initiation of swallow but is allowed to continue with food tasting which she thoroughly enjoys. Second swallow study done in Jul 09 shows she can swallow 2 teaspoons out of 4 tea spoons of yoghurt given. But it shows some muscle coordination issues between oro motor, throat and sphincter which causes food to queue up prior to entering stomach. Feeds through nasal gastric tube. On 3 times a week private speech therapy with vital stim since June 09 and once a week Physio with local hospital. We practice with her everyday on our own which saw more progress. Couldn't get into our preferred special school for EIP due to lack of teachers and long queue for spaces. Am looking for alternatives now.
definitions
silly me, ya i think ECI probably stands for early childhood intervention. Was reading someone's entry in the forum and got all excited as I thought there's some specific good therapy for hypotonia. Thanks for the definitions!
Oct 12, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I noticed that your siggy says you are only going to be getting OT once every 3 weeks. My advice is the squeaky wheel gets the oil. I'd make a fuss. Depending on the delay you should be gettign it at least 1-3 times per week. Minimum. I wouldn't settle for any less.

the wante dto pull some of that stuf with us for ST and OT (for feeidng) Adn I wouldn't let them. I pushed. We ended up gettign St once a weka nd OT twice per week. We have been able to drop St, Jedd is caught up and are down to OT 1 time per week but for twice as long.

If she is just now sitting (after you help her to a sitting postition) I'd push push push for more time!!!!!

Oct 12, 2008
jarenemum
Mom to 26 month old baby girl. Born at 33+weeks. Severe GERD, dysphagia (even to saliva), central hypotonia. Unable to do MRI due to requirement for G.A. and intubation risks. Docs mentioned chin is on small side which does not help with swallow. Currently 10.6Kg and 83cm long. Able to sit independently, pull to sit and sit up on her own. Able to stand with support and pull/push to stand. Can cruise. Started to crawl on April 1st 09. Babbles a lot but not saying real words yet. On early intervention programme. Communicates with a lot of gestures and finger pointing. Very intelligent. Swallow study done on 11/9/08 shows no initiation of swallow but is allowed to continue with food tasting which she thoroughly enjoys. Second swallow study done in Jul 09 shows she can swallow 2 teaspoons out of 4 tea spoons of yoghurt given. But it shows some muscle coordination issues between oro motor, throat and sphincter which causes food to queue up prior to entering stomach. Feeds through nasal gastric tube. On 3 times a week private speech therapy with vital stim since June 09 and once a week Physio with local hospital. We practice with her everyday on our own which saw more progress. Couldn't get into our preferred special school for EIP due to lack of teachers and long queue for spaces. Am looking for alternatives now.
therapy
for months now, the hospital where we go for homecare follow up visits had therapists that only gave us worksheets and short demos to get us to do the exercises at home on our own. I was fed up and just this month pushed for them to do the therapy sessions once every 3 weeks. I will push for more, you are right! Speech once every week and OT twice a week will be very nice. Does your child do therapy only with the therapists or are you guys trained to do the exercises too with him?
Oct 12, 2008
jarenemum
Mom to 26 month old baby girl. Born at 33+weeks. Severe GERD, dysphagia (even to saliva), central hypotonia. Unable to do MRI due to requirement for G.A. and intubation risks. Docs mentioned chin is on small side which does not help with swallow. Currently 10.6Kg and 83cm long. Able to sit independently, pull to sit and sit up on her own. Able to stand with support and pull/push to stand. Can cruise. Started to crawl on April 1st 09. Babbles a lot but not saying real words yet. On early intervention programme. Communicates with a lot of gestures and finger pointing. Very intelligent. Swallow study done on 11/9/08 shows no initiation of swallow but is allowed to continue with food tasting which she thoroughly enjoys. Second swallow study done in Jul 09 shows she can swallow 2 teaspoons out of 4 tea spoons of yoghurt given. But it shows some muscle coordination issues between oro motor, throat and sphincter which causes food to queue up prior to entering stomach. Feeds through nasal gastric tube. On 3 times a week private speech therapy with vital stim since June 09 and once a week Physio with local hospital. We practice with her everyday on our own which saw more progress. Couldn't get into our preferred special school for EIP due to lack of teachers and long queue for spaces. Am looking for alternatives now.
g tube feeding - pros and cons
hi, i noticed Jedd is g-tube fed since Aug this year. Can you share with me please your experience on the operation and also post-op maintenance? The docs have been asking me to consider this a long time since but I was very afraid.
Oct 12, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
We do some exercisizes with him. but I'll admit not as much as we should. It's just soo much to try and do since he is now oral. It feels liek all I do all day long is feed him to prevent using the tube..it's hard.

for us the G tube was the best thing we have ever done, period. It helped to get rid of th eaversion partly. The tube it jsut ahrd on the swallowing patterns. We got the G in Aug. of 07. We have had it over a year now!!! Time flies!!!! I'd do it again, in a heartbeat, really.

You are already doing the NG and the G is sooooo much easie rto take care of and since you already know how to run a pump the training is very simple.

Jed got a strat MicKey insertion so NO long tube for us. If varies from hospital to hosp. You can't request to have a straight insertion or even the other way around. Each hosptial does it there way. We just happen to have one that does straight MicKeys. We had NO choice on the type of button either.

Jedd was given a full dose of morphin in the step down unti prior to us gettign to our room for the night. That was all he needed for hard pain meds. Afte rthat we gave him reg. tylenol every 4 hours for about 2 days. After that he was fine and needed NO pain meds. Kids recover fast.

We had NG'ed for 8.5 months. For us that was about 6 months too long...LOL I wish we had done it sooner but we had a crappy GI at the time and he wouldn't put the referal through to surgery.

we wnet home the day after the surgery. Jedd was still not tolerate any feeds at that pint unless they wer econtinuos feeds with thepump of pedialtye. After about 2 days we wer eable to do continuos feeds of formula. It tok about 4-6 weeks to tolerate his boluses again. Which for him was about 2-2.5oz every 3 hours and around 37 CC at night for 10 hours.

We never made it back up to pre-G tube boluses or continuos. This is an issue with gettign a G. Alot of kiddos see a flare and then it back down to normal and they can tolerate feeds just fine. Jedd wasn't one of those kids, sadly.

Orally he tolerates MUCH more at a time. He can take 8oz of food/milk mixed in one feeding session. It' sjust the un-natural stretching of hsi belly he can't tolerate.

Here is my Myspace account, I ahve picutres in their of Jedd's G surgery. You can obviously tell he is NOT in pain. Warning!!!!! He is pink in skin color. He reacted to Robinol in his sedation cocktail. It is a normal reaction that lots of kiddos have iwth that drig. They will still use it agin, if need be. It wasn't threatening or anyhting. Jsut makes the kid turn red/pink....LOL

http://www.myspace.com/theonionjewell

You can also view alot of pictures here as well!!!!!

http://www.parent-2-parent.com/forum/showthread.php?t=89713

I am a pretty active member of that forum...LOL I bounce back and forth between the two!!!! Some of the picture may be protected and you may or may not be able to see them unless until you join. It's for our kiddos safety. Let me know if you can't see them there. I can link to a differnt post.

Oct 13, 2008
jarenemum
Mom to 26 month old baby girl. Born at 33+weeks. Severe GERD, dysphagia (even to saliva), central hypotonia. Unable to do MRI due to requirement for G.A. and intubation risks. Docs mentioned chin is on small side which does not help with swallow. Currently 10.6Kg and 83cm long. Able to sit independently, pull to sit and sit up on her own. Able to stand with support and pull/push to stand. Can cruise. Started to crawl on April 1st 09. Babbles a lot but not saying real words yet. On early intervention programme. Communicates with a lot of gestures and finger pointing. Very intelligent. Swallow study done on 11/9/08 shows no initiation of swallow but is allowed to continue with food tasting which she thoroughly enjoys. Second swallow study done in Jul 09 shows she can swallow 2 teaspoons out of 4 tea spoons of yoghurt given. But it shows some muscle coordination issues between oro motor, throat and sphincter which causes food to queue up prior to entering stomach. Feeds through nasal gastric tube. On 3 times a week private speech therapy with vital stim since June 09 and once a week Physio with local hospital. We practice with her everyday on our own which saw more progress. Couldn't get into our preferred special school for EIP due to lack of teachers and long queue for spaces. Am looking for alternatives now.
G TUBE
jedd's mum, thank you so much for sharing this with us. very useful. will surely visit your sites. keep in touch! my blog is at http://mummyathome@blogspot.com . but i am not as diligent in updating it though. cheers!
Check with your
doctor first!