Low Tone

Hi Ladies..Anyone experienced with low muscle tone? Baby B, Dylan, is weak in his upper body/trunk and legs. He is in EI for PT for Torticollis. Pt said his body has a "C" curve. We are doing exercises and a lot of tummy time..however I am extremely worried about the cause of his low tone. Ive heard it could be CP, MS or Downs Sydrome. He had a normal catscan in NICU and no signs of IVH. He was on CPAP for about a week and 1/2. Im worried that there was maybe a lack of oxygen that caused some kind of damage that wasnt detected. This may be a stupid question but is it possible to have low tone without brain damage(or anything of the sort) as the cause? Could it be he is weak and just needs some PT and will eventually be OK? Has anyones baby had this and had it turn out to be just a minor issue with no diagnosis of CP, MS or DS?

 

My DS had (and still has to some extent) low tone. He is a floppy kid. He was at least two months behind his twin on most milestones and we also had him evaluated. They took a 'wait and see' approach. At a year old they removed him from their books. He is still floppy and behind on most milestones. I had exactly the same concerns as you, but he is fine. I have slowly come to accept that he has his own schedule for milestones and that he will just be a floppy kid. We are currently waiting to be seen for speech and language therapy for him because our new family doctor has said he is behind on that milestone also. But I know he will be fine, just taking more time. So in answer to your question, low tone is not an indication of brain damage at all. My little guy is very intelligent and is so funny. Good luck. I know it took me a long time to accept his floppiness as being ok.

 

I'm sorry you're experiencing this worry. How bad is the torticollis? My Twin B had a very severe case and was also experiencing difficulties with his physical development. His body listed off to the right and he had a lot of trouble using his right side. He also goes to PT (and has been since he was 2 1/2 months.) I had a lot of CP worries, too, especially since my son was born with IUGR and on the small side (4lbs 14 oz). What we thought was low tone was caused by the torticollis--it caused his whole body to curl up, and he had little to no range with his right side. It took him quite a while to roll and sit. Once he started stretching, his body realigned itself and he was able to start using his right side. EI just evaluated him because his therapist was concerned about the way he sat up (he was slouching forward,) but he didn't qualify. He's standing, cruising and bending at the knees to pick things up. Mentally he is about 2 months ahead. He saw a neurologist for twitches, but it turned out to be nothing--so I hope it's safe to say he doesn't have any brain damage. He's also sitting straighter now. I really think the torticollis wreaks so much havoc on their little bodies. Is your twin hitting other milestones? Is he vocalizing? Does he move his legs/trunk on his own? What does your therapist/EI think? I hope everything turns out OK. In the meantime I would keep up with the exercises and the stretching--once my son started coming around he improved in leaps and bounds.

 

We had one boy with low tone and one boy with high tone. Both boys had little IVH, both boys had torticollis, both boys had PT since they came home from the NICU. Both boys are doing great, PT signed off on them when they turned 1, and no signs of any further problems. I know its hard to be patient and watch them develop, but I think that a lot of babies grow right through their tone issues. Good luck!

 

Thanks for the replies. Its comforting to know others can relate. Never would have thought id be in such a dark place consumed by worry and fear. I am just very confused, scared, and angry at this situation..and to be honest, I dont think I have gotten over the pre term labor and having 2 preemies. The moment the DR said I was going into early labor(32 weeks 5days), I was traumtized and often think about the whole thing and feel horrible..and now I have to wonder if my poor son has something wrong with him? This is NOT easy! Sorry for ranting..onto the topic at hand lol...Both boys had scans in NICU and were normal, however, Ive read that although having a normal result, a bleed can happen afterwards. I dont know what to believe. I will be requesting an MRI for Dylan at next appointment. The Torticollis is moderate. He slumps to the right when in swing and always lays with his head towards the right. His therapist noted he has a "c" curve. He feels like a rag doll when picked up and just feels very weak. He is vocalizing, babbles and coo's, smiles a lot and kicks his legs. His brother, Devin, is complete opposite, I have no worry about him at all.

 

I have a floppy baby. He has always felt 5 lbs heavier than his brother. Currently he is 2lbs heavier but both have been the same weights, too, & he still feels heavier. My floppy baby is perfectly healthy. He is extremely intelligent, runs, jumps & is much healthier than his brother, actually. :hug:

 

I teach early childhood spec ed (birth -5yrs) I have had numerous "low tone" students and literally maybe one was diagnosed anything (cp) literally about 98% of them were completely fine cognitively (average or above avg IQs)

 

I've been thinking about you a lot since reading this post and the first post you wrote on the subject, because your situation sounds so similar to mine -- one twin who is apparently behind and "floppy" and one twin who is right on schedule and very active. I've come to the conclusion that part of my problem is that one twin is SUCH a firecracker, she makes her brother look even more sedate and floppy than I would probably even notice otherwise. After a scary neurological appointment and an EI evaluation that gave me pause, though, I had the MRI and have felt so much better ever since -- it was completely negative. Jack has had PT and OT through EI for about six or eight weeks now and they are very pleased with his progress BUT at the 3 month re-evaluation by EI, the developmental therapist started expressing some concern about his social interaction and visual skills. She wanted to add DT to his schedule. Having the information about the negative MRI and knowing that there wasn't a damn thing wrong with my baby's social skills when there weren't three strangers passing him around like a sack of flour, I said no thank you (although I do plan to ask about a vision appointment at our next doctor's appointment). I didn't even worry about the re-evaluation -- after reading so many stories on this board about moms who were in the same situation and knowing their babies were just fine, I'm able to say to myself that babies just develop at different rates...some are floppy and some are not...having two to compare against each other just makes it harder to deal with the uncertainty and worry that there might be something wrong. I highly recommend the MRI, and I was dead-set against it to begin with because I didn't want to have to sedate Jack. It turned out to be a fast, easy procedure and the peace of mind it has given me is priceless.

Hope you can find some peace with this in the near future because I know how exhausting and terrifying it is to worry about this constantly -- I have been there. Best of luck and please keep us posted -- I would love to hear updates.

 

Just to clarify two things -- the 3-month re-eval was last week, when Jack was 10 months, not 3 months. They're coming every 3 months to keep an eye on him. Also, I totally respect the opinion of the EI therapists -- didn't mean to imply otherwise -- just that I realized that the developmental therapist was only seeing him for thirty minutes and I had never seen anything that would have concerned me about his social interactions before that. I realized after posting that I sounded disrespectful and didn't want to leave that impression. The EI therapists have been great and I very much appreciate their expertise.

 

TY.This brings some comfort knowing im not alone. Our stories are indeed similar. To say this has been terrifying and exhausting is an understatement! I am consumed with worry but it has been slowly lessening. We will be requesting an MRI at his Neuro app next month. Although his cat scan was normal while in NICU, I still would like an MRI to be on the safe side. His PT should be starting within the next 2 weeks. I am hopeful he will be getting the help he needs & will thrive and this will just have been a distant memory. Will keep you updated, thanks again.