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so did my son just get diagnosed with hypotonia?
12 replies to this topic
Posted 17 September 2011 - 07:11 AM
I have concerns about my DS's developmental milestones for some time. He gained good head control quite late, sat later, smiled later and at 13 months has not crawled, bum shuffled or walked, no pointing, clapping, waving, and pincer grip is more like a claw than being able to isolate finger and thumb. I brought this up with our nurse when he got his one year vaccinations and she referred us to the Children's Developmental Team. My partner made and went to the appointment as he is a SAHD, I actually wasn't aware DS was about to be assessed, I was told it was a physio appointment as otherwise I would have taken some time off work and gone to the appointment as well. Most of the concerns about DS's progress are mine as I am a teacher and very aware of the many different developmental needs of children. As DS is a gorgeous funny little boy I think my partner thinks there just couldn't be too much wrong. I've got to admit, whilst DP is an awesome dad, I'm suspecting some serious denial on his part when it comes to DS's development.
I have been concerned particularly about developmental delays and possibly ASD. When I really started looking at where he should be developmentally at around 10 months, I found he was probably more around the 7 month old mark in a lot of ways. That and a tendency to hand flap which got worse and worse for awhile and a lack of showing behaviours and some communication milestones got me wondering. Initially I just went with the flood of "you're worrying about nothing, he'll get there" advice, months on the gap between where he should be and where he is has widened.
My partner rang me after the appointment much relieved. Whilst obviously the person assessing could not rule out ASD at 13 months, she wasn't concerned at this point. According to DP, DS just had some strength issues in his legs and some delays in his gross and fine motor skills and there were some exercises for him to do and a playgroup run by the CDT that he should attend but otherwise nothing to worry about. I was a bit surprised but definitely relieved and happy to defer to an experienced professional. I asked about the exercises and information sheets that DP was given but they were in the car and it was late at night etc and didn't get them until yesterday. DP just summarised what was on it whilst we were having lunch and left them on the coffee table. DP went out for a well deserved break last night to a friends place and I finally picked up the info sheets when doing some cleaning up and found I had a handout for Low Muscle Tone (Hypotonia). I was like WTH. Is this what's going on with my son? Was he just diagnosed with this?
I txted my partner asking about it and he seemed mystified by the whole thing. He thought that the sheet was given to him as a set of exercises and that the majority of the information about hypotonia had nothing to do with DS. The "exercises" are actually a list of suggested activities kids with hypotonia, most for kids much older that DS can do to increase muscle stamina etc.
I'm just curious if any parents who have children that have formally been diagnosed with hypotonia have been diagnosed in a similar fashion. From what I can tell it was a questionnaire and a short physical examination of DS by the CDT physio. Other forum posts by mums and dads seem to involve a lot more testing than this to come to a diagnosis. I guess I'm trying to work out what the hell just happened. I'll be contacting the person at CDT and looking over report that's supposed to be coming out for clarification but I guess I'm just after what other parents experiences with the diagnosis process so I can fill in some of the gaps in DP's recall of what happened
Posted 17 September 2011 - 08:39 AM
For DS, his hypotonia was diagnosed by the neurologist picking him up under the arms and dangling him to see if he slipped down. He did do some other checks, but that was the main one that was a big indicator. Kids with low tone are often floppy and kind of squishy if that makes sense. Your son sounds a lot like my DS - late head control, and at now 18 months has just mastered rolling round the lounge room. DS also has a scoliosis which contributes to it. His tone issues are more related to his core strength rather than the peripheral (arms and legs), though the core affects these too.
In your position I would be looking into whether you qualify for an Early Intervention service too. We have some fantastic therapists who really do put their heart and soul into the kids, and the improvement in DS over the last 9 months is amazing. I love love love our team.
If you can afford it, a good paediatric physio is a great investment. You may be eligible for up to 5 visits rebated by Medicare too, through your GP. Worth asking.
One thing I was told about hypotonia is that the muscles can have a lot of strength, but low tone, meaning there isn't much control or stamina. DS for example has great leg power, but he can't stand yet (or take weight on the legs for that matter!). Yet when we put him in the bath or take him to the pool, he is like some kind of splashy dolphin-type creature, he splashes the water so high it hits our bathroom roof!
There is a boy at our school with low tone caused by Cerebral Palsy, and at age 5 he is still a squishy little creature, but just the most adorable little thing, and he is able to walk and run like a regular child, albeit a bit slower with the Phys Ed stuff, and he has an aide for some tasks. Both his mum and I refer to our kids as Squishies So whilst low tone can mean he needs a bit of help, and may do things later than others, it definately does not mean that he won't be able to eventually do them
I have also found that DS flaps his arms and legs a lot, usually when he is frustrated about not being able to get around like he wants. It's kind of like a tantrum really. His team don't have any concerns about ASD and have said its quite common in kids with motor delays as they get frustrated. Obviously you would still monitor the behaviour, as we are, but it can be normal
All the best, if you'd like more info please do send me a PM. Even if you just want someone to unload on I've learnt a lot about low tone over the last year or so, and am happy to share
Posted 17 September 2011 - 09:35 AM
My DS was diagnosed by a Pediatrician (Hypotonic Cerebral Palsy) with Hypotonia at first in a one hour app. Then later with Hypotonic CP after physio, hydro, and OT, and MRI. Now being tested for Myopathy (muscle Disease) by Pediatric Nuerologist and many many more tests.
A physio would be able to asses the presence of Low Muscle Tone but I would go to a pediatrician to have it formally diagnosed and assessed because although Hypotonia can be congenital and benign (born with it for no underlying reason) it is usually a symptom of some other bigger picture issue. I would see a pediatrician for this reason to monitor his progress and rule out anything else but the physio is also the way to go with the excerises as a course of management.
If it is Hypotonia I would make sure you have a good grasp of what Low Muscle tone is because it is not the same as muscle weakness/strength.
Posted 17 September 2011 - 10:02 AM
Thanks guys, that's very helpful. What you're saying reflects what I've been reading. We have an appointment with a paed in November (earliest we could get) and will be following this up. From what I can tell CDT is Early Intervention in the NT. I spoke to my partner again and at this point they are just recommending attending a playgym they run for kids with gross and fine motor delays, for a more specialised type of session than the general one we have been going to which is supposed to features the kinds of activities and exercises good for kids with these issues. The impression I'm getting, though I am waiting for the actual report and will follow this up with the paed, is his muscle tone issues are on the lower end.
I guess I was just put into a bit of a tailspin by the process. It wasn't particularly informative or transparent. We had initiated the conversation about our DS's progress from the perspective "Does he have a developmental delay or something else going on that's impacting on his development." My partner's impression was that the whole assessment was kind of cursory and not very straightforward: "Yes/No and here's why." The fact sheet I got actually said that hypotonia can be associated with other conditions, but no "so you might want to go and get that checked out..."
Anyway, thanks for the info. It's confirmed my sense that following this up with other people might be worthwhile
Posted 18 September 2011 - 06:52 AM
Okay - my oldest, on the spectrum, was diagnosed with hypotonia by the Development Assessment Team at age 5.
My youngest (not on the spectrum) was diagnosed as more severe than oldest at age 7. He had fine motor skill issues but pushed through, we were quite surprised when he was diagnosed at a higher level than DS1.
I too have it but did not know until DS1 was diagnosed (and my darling Mum pipped up with: "Low muscle tone? Oh, we were told you had it when you were little...").
The best way of describing it was this.
Our aide came to an OT session for DS1. She asked about his lack of ability to sit for 15/20 minutes during quiet time at school, he slumped or lay, or had to continually change his position. The OT explained to her that with the hypotonia him sitting for that time was the equivilant of an unfit, overweight 40 year old running 20 klms! And yes, the unfit, etc was referring to both of us woman sitting learning, lol.
Posted 18 September 2011 - 06:53 AM
Oh, and I have also been told many times that low muscle tone is very common for kids on the spectrum.
Posted 18 September 2011 - 08:35 AM
I can't comment on ASD, but my DD2 was suspected with mild low muscle tone/hypotonia by the early childhood clinic who suggested we see a physio for an assessment, and the physio agreed that it was mild but delaying her. We underwent a few months of physio and continued it at home, which helped her immensely. It was a slow process, but she eventually she achieved what she needed for her age.
Posted 18 September 2011 - 11:58 AM
Our aide came to an OT session for DS1. She asked about his lack of ability to sit for 15/20 minutes during quiet time at school, he slumped or lay, or had to continually change his position.
Thats really interesting....this sounds just like my 8yr old!
Edited by LittleMissPink, 18 September 2011 - 12:05 PM.
Posted 18 September 2011 - 12:04 PM
Another part of it is that the muscle or nerves do not transmit the signal to the brain in the same way as those without problematic muscle tone do.
My youngest (and myself) are leg jiggers. You know, the really irritating constant movement that drives others nuts? It is, according to our OT and physio, because normally if you are sitting the brain is aware of your leg positioning/posture without movement, with the lmt that signal does not get through and so the jigging is a "here they are" reminder from the legs, etc.
Edited by madmother, 18 September 2011 - 12:05 PM.
Posted 18 September 2011 - 05:32 PM
I can understand your frustration at not knowing "exactly" what was said at the appointment. I hope you can follow it up soon and get all the details.
My DD2 was diagnosed with severe hypotoina at 10 days old. Hers was not only in her limbs and trunk but also with her internal organs. She was very floppy, couldnt suck on a bottle, couldnt keep much food in her stomach because the sphincters were not able to do their job properly.
Over a long period of time physio was what helped her the most. We kept sessions short and they really did improve her over all health. We also found that hydrotherapy helped alot as well. Usually your physio can refer you to a hospital that has paed hydrotherapy
good luck with your next appointment xx
Posted 20 September 2011 - 09:47 PM
Thanks guys. Keep the info coming. I found this during my pregnancy that you have to be your own (and now my child's) advocate and be as informed as possible when walking into any appointment. We got the report today, apparently mild hypotonia in his lower regions. I'll be checking this with the paed when we have an appointment in November as I think he is also double jointed in at least his hands. I've read that this is sometimes associated? I remember some of the crazy things a friend could o to her joints in primary school and very very carefully and gently tested some of his fingers and they definitely look that way. Too scared to try anything else! He has always been a very clicky baby and am wondering if this is all related. We are thinking of trying to get him into baby swimming lessons as heard was beneficial and will talk to our chiro who was working on his hip for awhile (flat spot on head when little, always slept on one side = tight hip apparently) and see what she has to say. He has been put down for OT and physio and a speechie. Apparently 18 month wait for speech therapist! Thinking of private but no idea where money is going to come from. I just get freaked as a teacher as it can be so hard for some kids to catch up.. Anyway, thanks for all the feedback, been a bit more informative than the physio!
Posted 21 September 2011 - 12:37 AM
Lethe, I'm sorry you're hurting at the moment. I think the best thing you can do is attend a Physio appointment yourself so the Physio can have a chance to explain. Hypotonia is NOT a medical condition it is simply a description of muscle behaviour (a little like saying your hair is limp versus her hair is bouncy). It can be associated with some medical conditions but it also can just be--> my muscle tone won't be the same as yours, low tone can be helpful and a hinderance in movement. If you have been seeing a chiro for a while why on earth don't you already know your child has low muscle tone? If your child has a hip complaint Part of the assessment of that would be to look at the muscles surrounding the hip--> I assume the chiro hasn't done that or informed you of their state of tone?? Sounds like the Physio visit has been very helpful. Keep being your child's advocate But sounds like they have put you into the right system now
Posted 21 September 2011 - 10:12 AM
I don't have experience with this but my friend does, her now 3 yo didn't start walking until he was well over 2 and boot scooted from around 18 months. His language was also underdeveloped. I don't know how to describe it but he always felt light in his bottom half when you would lift him up.
He has been tested for everything and has low tone in his legs. He attends the hospital playgroup and it was then that he started to walk. In terms of his language he had a hearing test and was diagnosed with fluid on the ear and had grommets put in. His language through this and play group has improved dramatically over the last 9 months.
You can tell that there are some issues as he walks with bent legs, it is the same action as that of a puppet having it's strings pulled at the knee (Please parents don't take this the wrong way, I know this doesn't sound great but I don't know how else I could describe it in written form). His language is a lot better (his only words at 2 were ma and dada) but he is difficult to understand at times.
I think that it is great that you are getting treatment asap. The earlier the intervention, the better. My friend didn't see it, just thought he was a late bloomer like his older sister and her DH. He was 2 before she sought further help.
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