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Sep 14, 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.
to baby quinn mum
Hi, Babyquinn mummy, I was missing in this forum for 3 months now as my internet connection set up had some issues at my new residence. Not sure if you remember me. I asked about baby quinn a few times as my daughter also has dysphagia and reflux issues at birth. I am still trying to find a proper diagnosis for my baby girl. She is now 13 months corrected age. Is 10.5 Kg in weight and 73cm long. Dietician is trying to get us to reduce her weight in the hope of helping her achieve her physical milestones. Too heavy would not help things. She can sit independently when pulled to sit and stand quite ok when pulled to stand but is very lazy to try doing these herself. She was diagnosed as central hypotonic, the hypotonia mainly affecting her ability to swallow. We just did a swallow study (video fluroscopy) and it showed that she was unable to initiate a swallow, just moving food around in her mouth , which explains why she can't swallow her saliva and needs suctioning and regular cough outs to clear her saliva/secretions. Other than this, she is very bright, is able to follow verbal sentence instructions, is babbling a lot but not saying ma and pa yet or any other meaningful words. Can I ask please if Quinn has any similar issues with speech? And how long did she take to sit up and walk on her own? I hope you don't mind my asking as I have not found anyone else in this forum with hypotonic cum swallowing issues and hope very much to exchange learnings with you. The docs recommended for my girl to go for an MRI but it has to be done under G.A. And due to my girl's history of central weakness, they would need to have her intubated to protect her air way. They also mentioned to do all other tests at the same time, such as some genetic test where they had to get some spinal fluid from her lumbar. I am very scared to do this as I am more afraid of the side effects /damage of such tests due to the intubation and g.a. but at the same time, I am also yearning for some answers as to why my baby Jarene has such swallowing issues. It would be lovely to hear from you.
Sep 15, 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.
Contact Info
Hi just to add that my name is Sally, my screen name is Jarenemum and my email is sally.kwek@gmail.com. Thanks!
Sep 16, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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Hi Sally. I'm so sorry it took me so long to get back with you! I have been so busy lately and do apologize but I must make this short. Quinn is now 31? Months old. She will be three in January. Her swallowing issues have pretty much resolved, although I do know that she has a more difficult time than most children. We are to return to speech therapy when she is three if she still does the tongue thrust, sucks her lip as she swallows and still chokes on thin liquids. Otherwise, she no longer needs therapy for that part. She is doing quite well now. She has had issues with it though and she has history of aspiration pneumonia. I am not sure what caused it. The only clue we have is that it is associated with her low tone. Now that her tone (for the most part) has improved, so has her swallowing. i think the answer with your daughter Jarene might be that as well. 13 months is still young. I remember when Quinn was 13 months old. I was like you. I had so many questions and not enough answers. They wanted to do so many tests on her but I was so apprehensive. We are still trying to figure out just what is going on with Quinn. I can't help but wonder if the only reason she is doing so well today is because of all the intervention she has. such as: ST, PT, oxygen, g-tube, neb treatments, 8 different meds to help with her seizures, respiratory and GI system. Or it could be that she is just growing out of some things. I wouldn't recommend doing the MRI without intubation either. Quinn was heavily sedated for about four hours and she had to be admitted because she went into respiratory distress. Perhaps intubation would have helped, perhaps it wouldn't but from my experience with central low tone, they need to have a little more help breathing than normal children. I hope I was able to help you out some. OH... Quinn sat up all by herself when she was about 8-9 months old, but she could only sit up for about 5 seconds before she fell over again. She finally mastered the skill when she was about 12-13 months but even at that, if you touched her, she fell over. She started full blown walking when she was about 15 months old (I mean taking 5-10 consecutive steps) but she was so wobbly that walking was actually dangerous for her because she didn't have the upper strength to catch herself when she fell. She was still walking like she had just started walking when she wasa 18 months old and that is when we realized that something more had to be done for her. She got a leg brace on to help her and was placed into physical therapy. Although issues are still there, she does still have low tone, she is doing better.
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