Hello, my daughter is 9 months old and has what we believe to be benign congenital low tone. She goes for her 9 mo well baby on Wednesday and will be the first time we talk to her doc since starting PT. Her PT insists we don't need to look for an underlying cause because she's improving.
A couple of good points before the questions. As of two weeks ago Autumn discovered her ability to roll and is now spending more time on her belly although she still gets very tired and frustrated when it comes to getting back to her back. She has also just started sitting; although very unstable still we are so excited at her improvements with PT.
I had a couple things I was looking for input on. We were just told by her PT to go get her eyes checked because they are still crossing (esotropia/strabismus). I was wondering if this is most likely related to her low tone? I see that the most common step is surgery, but if her muscles have low tone I don't see how tightening the muscles will necessarily help; won't there still be slack in the muscles that are there? I know we should to to her PO; but her appointment isn't until Dec 9th.
Also, have many of you had feeding issues with your little ones? Like I said Autumn is 9 months and she is a breast fed baby. She refuses to open her mouth for any food. Once the food is in there, it doesn't seem like she has any problems manipulating it, she's never had any sucking problems, so I'm not convinced the low tone has affected her mouth. I just can't get anything into her aside from milk. She will pick up "snacks" if they're big enough, but they don't make their way to her mouth.
Anybody have any suggestions on helping her get used to food?
It looks to me like you are doing it all right getting her going in therapy. I do have a few ideas/suggestions...
1) Have a speech therapy evaluation....that professional is the one who would be able to evaluate and maybe help with feeding issues or delays
2) It's nice your child's PT thinks you do not need to look for a reason for her issues, but you have to follow YOUR gut on this!!!!
We have no eye problems that have been diagnosed, but I think my two affected kiddos are having eye changes/problems. I would go see the eye do on this subject. Again, my sons speech therpist was the one who worked with him on eating issues.
Sooooo tired that my eyes are crossing, or I would love to share more!! Here's our web site if you want to learn about our kiddos.
Welcome!! This is an awesome group of loving comrades!!!
Garrett, 4 years old, mild congenital myopathy,possibly MITO so hypotonia, g-tube from December 06-Fall 07, constipation, gross motor and speech delay, heart PDA repaired by hearth cath. Winter 08. OT once monthly, PT two times weekly, Speech 3 times weekly, water therapy weekly and as many horseback rides as we can fit in at home!
Addie, 8 years old, mild congenital myopathy, possibly MITO. Low tone, tires easily, poor endurance. PT weekly, regular swimming and rides horses 3-4 days per week and competes in barrel racing and other timed events.
Ainslee, 6, just about too normal some days, but really patient with all of her siblings' therapies!! Oh, CONSTIPATION...how can one forget that???
It is great news that you are seeing improvement with therapy. It can be very difficult to find a diagnosis but I think you have to go with your gut on this one. I don't really feel its PT's place to make that call. I would talk to the pediatrician and see if they feel you should do any testing or see any other specialists. Issues with eye muscle weakness and eating are common with low tone. Sometimes there is a sensory component too. I second the speech eval for feeding issues. No advice on eye surgery but I do know lots of kids have that surgery. So glad shei is doing better. Hope your doctor can be helpful. Kari
Hmmm, I have to agree with Kari, that it's strange for your PT to tell you not to further your search in finding the root cause of DD's hypotonia. Many of the children on this board progressed nicely in PT, but still had medical reasons for the hypotonia that resulted in a DX further down the road. I'm not saying there is a problem, just that progress in PT doesn't mean you should ignore the hypotonia. On the other hand, there are a few children that have "graduated" PT and moved on without any other medical involvement. She's young, so a "wait and see" approach is certainly an option. Just follow your "mommy" instincts!!
Sorry, I don't have any experience with the eye surgery, but I'm sure someone will pop in on the board that can help.
HUGS as you start on this journey.... just reember you're not alone....we're all here for you!!!!
We had our appointment yesterday and the Pediatrician agreed with you guys. She said that we need to go see a Neuro and possible genetic testing just to make sure there isn't an underlying cause. She said if everything comes back fine then we can just say, it is what it is and we'll work from there, but she insists we can't just say that without making sure there's nothing else going on.
Autumn dropped from 50% to 25% in weight so they recommended a feeding specialist as well. *sigh*
Also, our Ped agreed that she needs to see the Opthalmalogist and that glasses, patching, maybe eye drops to relax her eyes and at very last perhaps surgery may be needed. We'll go from least invasive to invasive.
My hope - neuro finds nothing - genetics are fine - she keeps improving - she starts eating, glasses fix her up and all is well with the world. I have so many thoughts swimming around in my head that it's really difficult to get them into words. I do appreciate you guys chiming in though on my earlier questions.
Have a good day!
I attached a picture of Autumn, DH was off to the side ready to catch her should she topple over. She's still pretty wobbly.
