Posted By Posting
Oct 25, 2008
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
OT appt -- more questions than answers
Well, we had the OT appointment yesterday and now I am even more confused, as if that's possible... I had called to let them know that Lorenzo had started eating solids really well, so we were really just looking for input about the possibility of low muscle tone being the cause of the obstruction causing his sleep apnea. I had this conversation with the actual OT, and she said that she would be able to assess that, but when we got there, she said she really couldn't assess that kind of thing and he should go to an ENT for that. I'm feeling pretty frustrated with this medical passing of the buck...

She did note that Lorenzo almost always has his mouth open, which could indicate low muscle tone, but she said that you ordinarily see low tone throughout the body, and he most definitely does not have low tone elsewhere. Do any of yo have experience with this -- low muscle tone in the jaw, throat, but not elsewhere?

Does it seem reasonable to suspect that a minor low tone issue would exacerbate reflux obstruction? What else can you think of that would cause him to have his mouth open all the time? (The first thing that comes to my mind is constricted sinus passages, which makes me wonder if reflux can cause scarring in the sinuses -- he used to frequently have refluxed material shoot out of his nose. Environmental allergies?...???)

We've got his first GI appointment next Friday, so hopefully we will get some direction, if not answers, there....

Oct 25, 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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you know what is really funny about people commenting on the low tone... when Quinn gets admitted to the hospital, all of her records say she has normal tone and normal development, but when she goes to her follow up appointments, her therapies etc... all her records say she has a developmental delay and low tone. I just find it strange how different things can be. And it's frustrating. Maybe it is more of an oral coordination issue? Maybe he cannot coordinate the swallow well and so he lolls his tongue out so he doesn't have to swallow???
Oct 25, 2008
mommyto2
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
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I have heard that leaving the mouth open constantly can be a sign of low tone (the reason a lot of down's babies have their mouths open-I have a friend w/ a down's dd). Aubrey constantly drooled from the day she was born and they said reflux in combo w/ her swallowing and low tone she could not learn to swallow. I hope you get answers soon!
Oct 26, 2008
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Thanks for your input. It's all very confusing and frustrating... He has always had that relaxed mouth look -- I have an uncle with Down's Syndrome and everyone in the family mentioned it right away about Lorenzo, even though he is not Down's. It's just so weird, because his muscle tone in his trunk and limbs is pretty incredible -- he's always been way ahead on physical developmental milestones.

I asked the OT if there would be any speech challenges associated with low tone, but she didn't really know. Do any of you know? His biggest challenges are the "r" and "l" sounds, which I know are sounds that are often not acquired until around 2 or later, but it interests me that they are two that require a lot of muscle use at the back of the throat. (It's times like these I wish I still had a brain -- my degree, a million years ago, was in linguistics, but my ability to recall anything that I learned more than ten minutes ago is extremely limited....) It just drives me nuts when there are all these tiny pieces to the puzzle that are just beginning to get put together after all this time....

Oct 26, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Ella had hypotonia all over but it did not affect her speech, though I am sure it could have. I worked really hard with her and her twin b/c twins tend to run behind in speech anyway.

I would imagine that an having uncoordinated tongue movement etc would def affect speech. I think you can have adequate muscles in the mouth and yet be unable to coordinate them properly. (????). Maybe that is the issue?

An ENT does sound like a good next step. Had he had his tonsils and adenoids looked at as a possible issue? Humn... can babies have deviated septum? Just thinking out loud.
Check with your
doctor first!