Anyone ever deal with a "low muscle tone baby"? m....

[Stacey in MA]

Just had DS1's 12mo check up at the Dr's office.

DS1, who is newly one, has several physical issues that are needing investigation. One is his low weight (5% since at least his 9mo appointment, though at birth he was 8lb13oz and around 70%), another is is "low tone" (as the dr. calls it - for example, he doesn't grab on when you pick him up. He is sort of limp), and the third is bowel-movement issues since day one (he is usually constipated, and had to start prune juice and/or glycerin supp's since the 2-4mo. range. We're off the prune juice now, but still need the supp's far too often).

ANYWAY, I know I can google and do tons of research to find info. We are stepping forward with our pediatrician with some blood tests presently. Might have to face some specialists - gastro and/or others - to make sure it's not a disorder or disease, and might have to face some PT along the way to encourage the proper muscle development.

I am simply curious if any of you other moms have dealt with this before, and where the journey has brought you. Care to share your story? A friend (who used to work in an early-aged daycare and preschool enviroment) recently told me that she saw plenty of babies who had "low tone" who had no real disorder, and whom she witnessed outgrow the troubles. This comment made me feel better!

Thanks for listening and sharing if you can....

- Stacey in MA

[Kathy in MD]

Just had DS1's 12mo check up at the Dr's office.

DS1, who is newly one, has several physical issues that are needing investigation. One is his low weight (5% since at least his 9mo appointment, though at birth he was 8lb13oz and around 70%), another is is "low tone" (as the dr. calls it - for example, he doesn't grab on when you pick him up. He is sort of limp), and the third is bowel-movement issues since day one (he is usually constipated, and had to start prune juice and/or glycerin supp's since the 2-4mo. range. We're off the prune juice now, but still need the supp's far too often).

ANYWAY, I know I can google and do tons of research to find info. We are stepping forward with our pediatrician with some blood tests presently. Might have to face some specialists - gastro and/or others - to make sure it's not a disorder or disease, and might have to face some PT along the way to encourage the proper muscle development.

I am simply curious if any of you other moms have dealt with this before, and where the journey has brought you. Care to share your story? A friend (who used to work in an early-aged daycare and preschool enviroment) recently told me that she saw plenty of babies who had "low tone" who had no real disorder, and whom she witnessed outgrow the troubles. This comment made me feel better!

Thanks for listening and sharing if you can....

- Stacey in MA

Low muscle tone is a common symptom of SID or SPD, it's newer name. If your ds does have it AND it's caught early, it's generally curable. If it's not caught til the child is 7 (the age it was caught in my ds), it can be remediated, but not entirely.

If your ds does have SID, it can affect far more than muscle tone. It can affect fine muscle control. That in turn can affect hand writing and possibly eye control. In my ds it affected his inner ear and language development. It can affect motor planning, organization and eventually executive thinking skills when they hit puberty.

But caught at your ds's age and treated by a good OT, he should have no long lasting repercussions and minimal delays.

[KIN]

My 2nd son had gross motor skill delays. We started PT/OT at 8 months and he was walking by 15 months. He hasn't had any other delays, we were watching for speech delays at the least. This year he is in K and is doing great! My advice would be to get PT/OT going as soon as possible. The earlier the intervention the better the outcome - that's my thought anyway.

[Quiver0f10]

My 15 yo had low muscle tone. As a baby, He would be crawling along and his arms and legs would go out from under him. He was late to walk and as a small child he couldn't get off the floor without crawling over to a chair and pulling himself up ( even at 6-7 years old). He had some PT, but other than that no services and is fine now, although he is not the most coordinated of my kids. No other issues.

My advice would be to get PT/OT going as soon as possible. The earlier the intervention the better the outcome - that's my thought anyway.

I second this!

[Canada_Mom]

This response probably won't be as helpful as I wish it could be, but here goes..

I have an acquaintance who has a baby with low muscle tone. He just turned 2. He has the same digestion issues that you mentioned. Two things that I know they have done that have worked tremendously for him is to take him to see a chiropractor on a regular basis- they started this around 15 mos as they were unsure about going this route. They have been completely amazed from day one with the results and the changes they have noticed in their son. I will add, though, that it's very important to find a good chiropractor as a lot of them are questionable. The second thing they do is supplement his diet with high quality, Kefir. They feel this has made a tremendous difference.

I don't know her that closely so I'm sure that they followed up in other ways with his condition but these are 2 things that she has mentioned repeatedly in conversation.

[Karin]

Yes, my ds had low muscle tone. He was in Early Intervention for OT for 2 years. How much of his improvement came from that and how much was on his own is subject to debate, but I think it did help. He tested behind in EVERYTHING at a year, but now the only thing that has just come up is he's now speaking nasally.

Ds also was born with poor eyesight, but I had no idea until he was nearly 4. One of my nephews moved his bowels once per week but wasn't considered constipated because the stool looked healthy, albeit large. While this doesn't seem normal to me, he's always been healthy, so I'm guessing the MD knows what he's talking about, lol.

Now, in your case there are other issues, such as size, that we didn't have. Ds was very thin for a baby, but put on a normal amount of weight and grew very long (4 inches in 2 months--the clothing size changes indicated it wasn't just an error in measuring). I think it's a good idea to get further testing done to rule out anything that might be wrong, but OT might be a very good idea as well. Our med insurance paid for Early Intervention because the pediatrician prescribed it, so you may wish to check into that.

fwiw, as your child gets older, swimming is a trememdous OT addition. You could start now if you haven't already.

[Stacey in MA]

Thank you! I am considering all you have said.

I want to add one thing, which I plan on telling the Dr. when I speak to her tomorrow.... DS does a weird thing with his hands and feet when excited (and always has, since he could wiggle at all!).... He "twirls" them (for lack of a better word). Both at the same time. Literally, they all start to go round and round like windmills! I'd get a foot cramp if I tried it myself! ;-) This happens almost every time I set him in the high chair getting ready to give him food. It's a sign to me that he's excited and eager. It's normal for HIM, so I overlook it, I guess. But it obviously isn't "normal", or "standard" or "ordinary". It's a bit unusual, when comparing him to other kids I suppose. I thought of it when I looked up the SID info referred to in the previous post. Could this be a symptom of some funky processing going on? My brief understanding of the SID is that the senses take IN info just fine, but it can come OUT in all kinds of unintentional/unsystematic/mis-wired ways. This seems to be the case with the twirling.....

On a different note, DS CAN cruise now (FWIW, he's 12m4w), and this week has been pulling up on his own to walls and other furnishings. But he still can't crawl (he does "scootch" on his bottom though - very mobile - just not an actual forward crawl). Also, when he does fall forward onto his arms, he cannot catch himself and ALWAYS lands on his face. It seems there is just no strength or coordination in his arms. YET, he does self feed with his fingers AND a fork. Weird, I know....

Anyway, just thought I'd add a few extra bits of info, in case you have more to comment. And also to say thanks for taking the time to give me some info to chew on, and for sharing!

- Stacey in MA

[Cricket]

This is an interesting thread. My now 4 yo dd was never diagnosed as having low muscle tone but I had concerns about her when she was a baby. She was always at the bottom of the charts for weight but my other dc were too. I remember at 5 mos old she still had problems holding her head up. Sometimes her head would drop. She didn't walk until 17 months. (My now 6 yo ds didn't walk until 18 months old. But that is very consistent with his very cautious personality.) She had several food allergies as a baby and was always covered with eczema. I took a more active role with her when she was a baby to develop her muscles. I made her do things she didn't want to do--like laying on her belly, encouraging her to crawl. She seems fine now. Her fine motor skills seem okay. She is learning to write letters but doesn't seem quite as advanced with fine motor skills as my 9yo ds was at that age. But it is hard to compare since I think he was exceptional for his age.

The constipation thing is interesting. When my dd had several kidney infections last year and the urologist did an ultrasound and CT scan, he said her bowels were compacted and had me put her on a mild laxative for a week or so.

Definitely go with what your doctor suggests. Maybe my dd's "problems" were overlooked since every time we were in the doctor's office she had other problems like asthma and a few unexplained infections (most likely kidney infections).

[Ottakee]

I would ask the doctor to see a pediatric neurologist. Your son sounds a lot like my now 11dd, even down to the constipation.

Ends up she has very mild hypotonic cerebral palsy. Don't let the name scare you, it just is a big word for lower tone. She sat at 9 months, crawled at 12, walked at 18, potty trained at 4 1/2, etc. It does not mean they have a mental impairment, etc. either.

She also has a mitochondrial disorder but that is very rare.

The neurologist could help get you the services you need---likely OT and PT for a while---mostly likely in home through the local 0-3 program. You might also talk to a gastro about the bowels. We ended up with her on Miralax and that has worked wonderfully long term.

On postive notes though, she is now horse back riding, riding her 2 wheel bike, running around, etc. Only those that really know their stuff would be able to pick out any problems.