Parenting: 2-Year-Olds Community

My DS1 doesn't have a low muscle tone but does have a neurological disorder called neurofibromatosis type 1, it's genetic. He was a late walker (14-15 mos) as well, and he still kind of walks funny probably related to his lower left tibia/fibula dysplasia. Anyway, so I have gone through the same "what if"'s you're going through. He goes to see a pedi neurologist once a year now. We were concerned he had some developmental delay related to NF1 but the neurologist kept reassuring us that he was fine, that he was just taking his sweet ol' time doing things. Now he jumps, runs, walks, etc. just fine, and super-smart like your LO. I guess my advice would be to 1) stop looking on the internet and 2) listen to what your mama instinct is telling you. Doctors can tell you there's nothing wrong till their faces are blue but if your instinct is telling you otherwise, you should insist on digging further. But remember that in the absence of definitive neurological deficit/disorder, it is entirely possible that she just needs to spend more time walking/running/exercising. Sometimes Physical Therapy to kind of jump-start her activity levels or even remind her that she can do all these things may help even if there's no diagnosed disorder. Then again, low muscle tone can signal degenerative neurological disorder - that can only be assessed properly by a pedi neurologist. If she's not regressing in her physical ability, I'd say she just needs more practice/exercise....then again, I'm no MD.

DS had low muscle tone, but it's usually diagnosed as an infant (he was diagnosed at 4mos). He's almost 13 mos and isnt walking, but I dont think it's due to hypotonia. He was a preemie...crawled around 9 mos (army crawled before). The potbelly is normal. If you research it, they dont have the muscle control to hold their belly in. It goes away around 3.

Lurking... my son has low muscle tone too. He was also a preemie (33w4d), so that probably has something to do with it. He had an umbilical hernia for a couple months when he was younger, and now that you mention it, the small amount of tummy he does have (he is very long and lean) does stick out a little bit. He is actually doing pretty well at this point... he is not walking yet, but is creeping around the furniture at a lightening fast pace, so I think walking is on the horizon. BUT he still has the stereotypical traits of having low muscle tone (e.g., "slipping through" feeling when you pick him up under the arms, retracted shoulders when standing, etc...)

I am just curious, but did your doctor refer your daughter to Early Intervention? Early Intervention is a free or low cost state program that provides physical therapy to kiddos that have milestone delays or other medical problems (like SP or DS) that are likely to cause milestone delays. My son was diagnosed with low muscle tone and was late to hit his rolling milestones at his 6 month d/a, so we were refered. He ended up not qualifying for therapy he seemed to catch up on his milestones super fast (I think preemies are like that sometimes), but the PT and teacher that visited our home provided us with some good advice on how to encourage his physical development. I found it worthwhile.

My first thought when I read your post is that there might be something else going on unrelated to the low muscle tone. Although the low muscle tone probably has some effect with her being a late walker due to physical strength reasons, I doubt it would have any effect on her energy level. My son was anemic for a few months after he was born, which sometimes causes lethargy.

I agree that the internet is a scary place when it comes to looking up symptoms, so I don't recommend doing too much of that! I would however, maybe get a second opinion on what else could be contributing to her low energy level and possibly get a referral to EI to see if they can provide any help with her physical development. HTH!

she doesn't have the "slip thre fingers feel", i goess it's more like, when i feel her thighs, calves, etc.. and it is what dr said, a childrens ped at Ar Childrens Hosp in LIttle Rock, Arkansas. she can climb all over, and always has been a climber, she will climb onto top of dresser, out of and down the side of crib, without falling, and into her highchair every single night, holding her sippy cup all the while. she's been wealking 4 months, and i thought the awkward walk, and sway back would get better.. i was noticing her naked walk last night, and it does appear to be better.. after 4 months, should i just give her more time?? on the weekends, she doesn't wake til like 10 in the mornings, then goes back for a nap at 1 and doesn't get up til 6 pm supper time,, so she's rarely outside- so i attribute her wanting to be held to insecurities. My question: at what point do i realize that time is not the answe-- she's NOT ok?? i am starting to wake her up more, so she can just be more mobile.. maybe she's in bed tooo much, so she's not as active....

My DS2 didn't walk until 20 mo. He is now 25 mo old and his almost running, is climbing pretty good and we are working on jumping but he can't get his feet up. He like your DD is perfectly on track cognitively. We've been seen twice by a geneticist at a top children's hospital and his advice has been to continue with therapy, he has physical therapy and occupational therapy and wait and see. The most important thing according to him is that you are seeing progress.

My advice would be...

STOP with the internet. Seriously. I almost turned myself into a crazy person googling things. I will reccomend a good message board about kids with hypotonia. The ladies on there might have more advice for you.

messageboards.ivillage.com/iv-ppchdhypoton

Like someone else suggested, if you haven't alreadycontact your state's Early Intervention office. It sounds like she definately would qualify for physical therapy and a good therapist will give you tools to work with her on a day to day basis in increasing her endurance and strength.

Has your pedi done any testing? Hypotonia is either caused by the brain or the muscles. When they can't find an underlying cause, they call it benign congenital hypotonia. Low-mucle tone kids do tend to tire more easily but in her case the amount of sleep sounds a little extreme. How much is she sleeping total in a day? Also, if she is eating a lot and not gaining weight (which can be totally normal!!! my niece was 22 lbs at age 3) I think there are some metabolic disorders that can be related to low muscle tone.

We've decided to wait on testing b/c my DS2 is making great progress and not really having any issues. We will be seeing the geneticist for the 3rd time in March or April and will also see a neurologist, at that time we will decide on doing an MRI or other testing.

GL! I know it can be scary and frustrating.

know this says 3 years ago but my son has low muscl tone and he is 2 1/2 and he can't walk i don't know what to do with him i love him so much but i have a girl that is 4 him that is 2 1/2 and then one more boy that is 1 so i am going going going i love them all and i am ok with that he just ca't walk but the thing that is getting me is that he don't sleep at night at all so i have 3 kid's and i never get sleep i work with him all the time i have people that come to my house most the time like 1 time a week to help us with him they tell us that we are doing so good with him and they think that in 6 mon that he is going to be walking so that would be at 3 so i have come to be ok with the walking now becouse they say that he is going to do it it's just going to be on his time you know but did your kid sleep i get know sleep and have 3 kids you name it i have did it with him i don't know what more to do with him put him to bed at 9 he gets up like every hor if not more and then to night at 4am i just got up came out of the room with him and put the tv on he cryed on tell like 6 and now he is sleepin and out but i can't go back to sleep my girl has school and has to get up in a hor if you can think of anything that could help me pl let me know thank you krissy