Hypotonic 18 month old ?

[haerae04]

Hello, my name is Heather. I have 18 month old twins, Sophie & Janie. Janie is going to an pediatric orthopedic @ a children's hospital.  He is sending us to a Nuerologist for Hypotonic. He didn't give us this term, but today I had to call back for them to tell me something and they read what he wrote in her chart. She has been seeing a physical therapist for about 7 months, now. I am trying to dfigure out everything I can about this. I wanted to kinda spell out what all is going on with her and see if anyone could give me any advice, their opinions, anything & everything,

Janie & Sophie are identical, they were born @ 32 weeks. Sophie is absolutely fine. Janie was born with club foot, from her positioning in the womb. She's 18 months old, she's just now standing up, but her ankle's give to the side and her knees bow backwards. If she is standing without shoes, she stands on the top, side of her foot.  I've never seen her move her toes.  Her hips are very flexible, she can do the complete splits, she pulls up from the splits, she goes from lying down to sitting or crawling by doing the splits. (If this makes any sense) She is delayed, they have said from her pt that she's on a 9 - 10 month level, she's re-eval ot this week, so I don't really know much info on this yet. She also doesn't chew any food. She sucks on it all. I still mash up her food like baby food or cut up into small soft chunks. She's just really in the last few months started picking up her food with her pointer finger and thumb. Only 1/2 the food makes it to her mouth.  

This is our situation at the time. If anyone has an questions please, ask, I'm an open book,. I'm really just looking for experince, does this sound like what she might have? Any and all advice is welcome!

Thanks, Heather & Janie

[*LoveBugMama*]

Hi! 

I don`t know much about the diagnosis you are facing, but I just wanted to welcome you to MDC! This is a really warm, informative and helpful forum, and I am sure there are others here who can give you info about this. 

[devon]

Hi Heather - Hypotonic, or 'hypotonia', just means low tone - or low muscle tone.  Which, from your description of her hips, sounds like Janie is.  From my experience with my son, hypotonia is often a symptom of something else.  In my youngest sons case, he is hypotonic because he has a genetic disorder, as well as cerebral palsy. 

The other things could be a result of the low tone as well - a lot of kids who are low tone have issues with endurance, eating (because their low tone extends to all muscle groups in some cases, including the mouth), picking foods up, etc.  The club foot probably is making it harder for it in addition.

I'm guessing that they are referring you to a neurologist to see if he has any idea of what might be 'causing' the hypotonia.  I know that you said she is getting PT - is it through Early Intervention?  If not, I'd suggest getting her evaluated through that as it can be a wonderful program, and she might qualify for occupational therapy as well (since it sounds like she's also struggling in some other areas).

My son who has low tone is doing really well.  He didn't crawl (army style) until 15 months, and didn't crawl 'normal' style until 18 months, when he also started walking.  He's taken off from there and is doing fabulous.  He gets PT 1 hour/week and has since he was 6 months old.  He also has orthotics which give him more ankle support and really helped with his walking.

Good luck!

devon

[lilmissimpatient@c]

Our son has hypotonia, also.  We've been down the line of specialists - from orthopedic to neurology to genetics.  DS is 30 months now, and has been walking for about 5 months.  He doesn't have much endurance, and uses a medical walker to get around towards the end of the day.  DS is also hypermobile, which means his joints are extremely lax.  His fingers can fold backwards to the tops of his hands, as can his toes.  We call him "jello-baby" because he really just feels like a child made of jello.  He's squishy :)  

It's a scary road, mama, but don't freak out yet.  I googled myself into a fit this summer while we were searching for a dx for him.  I know it's hard, but deep breaths, one day at a time.  Feel free to message me if you want to chat, or talk more about the hypotonia, etc

[lindsayinnc]

Hello, 

My 14 month old son also has hypotonia, and has "loose" joints.  At this point we don't have a diagnosis of anything else but have had several tests done.  He has had a normal MRI, EEG and lots of normal bloodwork.  He does have 1 test that keeps coming back, he has elevated organic acids in his urine but not enough to be diagnostic of anything.  They are currently being run again so we will see if anything changes.  

Thanks for the stories from moms of older kids, it is hard to get a good picture of what he will be able to do in the next few months/years.  My little one is not crawling yet but is starting to do a bit of an army crawl, he tries to lead with his head though instead of picking it up, any ideas on improving that are welcome :)  He is very interested in standing and walking though and will cruise holding on to the couch etc.  He gets PT weekly for an hour which has helped give us ideas of how to best help him.  

Devon - What type of orthotics is your son using?  I am curious about if this would benefit my son.

No real advice for you Haerae04 but just wanted to let the other moms of older kids know how nice it is to hear stories about what it has been like!

[Treece]

Hi! I cant offer any advice, but I am in a similar boat. My dd is both hyper and hypo tonic. Meaning that in her legs and arms she is hyper so that she is very stiff, and in her back she is hypo, like a ball of mush. So, she has a hard time with somethings. She is also hearing impaired, but I don't yet know if any of it is related and how.

But wanted to give a big and

MDC is the GREATEST place on the internet!!!

[devon]

My son has been using Sure Step Orthotics since he was 15 months. We really like them a lot.  He recently went from SMOs on both feet to an insert on the left foot (like an adults orthotic) and a slightly higher SMO on the right side (the side that is impacted from his cerebral palsy). 

I know lots of kids with Noonan syndrome (which is the genetic disorder he has) that have issues with crawling because of the head thing.  If they have low tone, it is tougher to lift the head to crawl so they do the head thing you are talking about.  Our PT actually said it is easier for kids to walk then crawl if they have low tone, because locking the knees (not a great thing for them to do, but they do) provides stability.  Many Noonan kids skip crawling and just cruise instead.  My son didn't crawl for very long, even though he had the skills to, because he preferred to walk at that point - I think it was easier for him and used less energy. 

My son has 'loose joints' as well, so he gets periodic hip x-rays to make sure that his hips are not slipping out of socket.  So far, so good.

We have been seeing a pediatric physiatrist, who I love.  She prescribes the orthotics and follows up on his other physical/gross motor skills.