View Full Version : Looking for other mums who's children have "Hypotonia"
Hello,
I have two children who have both been diagonised with hypotonia. I was wondering if thier were any other mums out there who's children have the same disorder.
Hi Chontel, what is Hypotomia? i dont think i have ever heard of it before.
caitsmum
17-12-2005, 16:00
I don't know if this is any help or not but I have a five year old daughter who is hypotonic. She was born at 28weeks gestation and has several other problems.
Her low tone has ment that it has taken a long time for her to reach her milestones. Eg she didn't walk till after she was 2 years corrected. She tires very quickly and has to put a lot of work into acheiving what she wants to.
Physio was very benfical. Lots of ideas like the big ball work, compressions and ideas to use on the trampoline. She is starting school next year so we need to look at how the hypotonia will impact on her ability to keep up and her fatigue levels. We are looking at teaching her to keyboard early on as she will probably not be able to write quick eneough to keep up.
My daughter still has a sleep everyday and I make sure she eats well - high energry, high protien diet as the extra work she puts into her physical activities burns off alot of extra calories.
I hope this has been of some help. If I can give you any more info please let me know.
How old are your boys?
Take care
Therese
Hi Chontel, what is Hypotomia? i dont think i have ever heard of it before.
Hello Coopsntilly,
I would like to say thank you for responding and taking an interest and learning something new.
Basically, Hypotonia is children with low muscle tone. A bit like a rag doll cat. Our children are very flooppy and in my case have to attend physio etc to build up their muscle tone. It doesn't affect their intellect but does make things like crawling, walking and talking harder to reach.
Emotionally it would be great to talk to other parents who have the same disorder, so you don't feel like your doing it alone.
Thanks again :)
Chontel
oh ok, thankyou so much for getting back to me :) i noticed a mother with a child with the same condition has responded, so i hope you are able to start getting some support, i agree, someone to talk to who is in the same boat would be really important. all the best.
Hi Chontel and Therese,
My DD has Down Syndrome and almost all babies born with ds have low muscle tone and she is one. I know how you feel and it can be very hard but with physio and ot and a whole lot of determination milestones will be acheieved, in your childs time but they will get there.
Would love to hear more from you both.
Therese, sorry just a quick Q, how was toilet training? I'm trying to get DD trained and would like to know just how much the low muscle tone affects this.
Thanks Kris.
Hi Chontel and Therese,
My DD has Down Syndrome and almost all babies born with ds have low muscle tone and she is one. I know how you feel and it can be very hard but with physio and ot and a whole lot of determination milestones will be acheieved, in your childs time but they will get there.
Would love to hear more from you both.
Therese, sorry just a quick Q, how was toilet training? I'm trying to get DD trained and would like to know just how much the low muscle tone affects this.
Thanks Kris.
Oh nooooooo. I completly forgot about the muscles we use when we go to the toilet. To be honest my muscles aren't that great anymore either :(
Chontel
will&samsmum
18-12-2005, 22:28
Hi Chontel.....our 18 month old DS does not have hypotonis but he has a rare brain condition and that has led to low muscle tone. He works very hard at Physio and Occupational Therapy every fortnight and is slowly getting stronger. He has just been given a standing frame and hopefully that will help him stand. It's a long slow process but extremely worth it. We have him massaged once a fortnight and have a reflexologist work with him on the alternate week to the massage....we have found this quite beneficial.
Take care
Emma;)
mummycloud
18-12-2005, 23:15
Hi :)
My kids don't have hypotonia, but they have hyperflexia which, by reading the other posts, sounds similar.
My 2nd and 3rd child couldn't sit on their own till nearly 12 months because of it. They also have a problem with their joints becoming dislocated very easily. My 3rd child didn't walk till she was 2 and a half because her tendons would over stretch, so she had to go to physio to strengthen her muscles to make up for it :(
The things that bothored me most about it all ,was the fact that I had to carry around a very heavy child everywhere and it was hard on my back. It was also so sad to see her watching others kids her age running around and she couldn't do it. I was so scared she would never walk and end up in a wheelchair. It was hard work for her to get up and walking, but once she could do it, she was off like lightening..LOL :D she's absolutly fine now at 4 years old, but every now and then I have to click her elbow back into place for her :eek:
Michele Crocker
30-12-2005, 08:21
Hi,
My eldest child who is 12 has low muscle tone. I did not know it had a name. He has been having physio/OT on and off since he was born. He was also slow at doing things. He did not sit up until he was 12 months, he did not crawl until he was 18 months, and did not walk until he was 2 and a half. We had problems with his toilet training and we had to delay his start of school because he was not properly toilet trained.
His motor skills now are still behind what a normal child at 12 can do but he is slowly improving. He has other problems as well like epilepsy which he is on medication for. Even now at 12 we had a few problems with his toileting but at the moment we are on top of it.
Michele
Mother of Christopher, Luke, Melissa, Jayden and Ashleigh(8 weeks)
my son was also diagnosed with low muscle tone but it was never given a name. he is 4 now and does tae kwon do 3 times a week and san chi tai once a week (another martial arts) he also attends mainstream pre school. it was hard when he was younger and going thru the tests to see if he was brain damaged etc... we live on the gold coast and he went thru the development assesment team. keep your head up and when they achieve something it makes it so much more special. dont feel that you have to give excuses for your childs lack of development, its not any one elses business. i found it hard when jake was small and we attended a play group they were all facinated by jakes condition and i found it condescending when they cooed and wowed over jake and not the other kids like he was their project. i know they ment well but you dont want your child to be special you want them to be the same. but theyre not.... my boy is the most special boy i know... to me
:hugs: and:kiss:
sue
Roseythorn
10-04-2006, 19:20
Hi,
My son has been diagnoised with hypertonia. It was first detected when he was 4 months of age and was still not able to support his head and was just generally floppy. We have been going to physio every two weeks and she gives us lots of excercises for him to do. We have started to reach some milestones through the constant excercises, at 6 months he was holding his head up. At age 7/8 months he was rolling from back to belly and starting to use he hands to push himself up when he is on his belly. Now he is 9 months and just starting to learn to sit upright and also starting to roll from belly onto his back. It has been really trying and upsetting at times seeing other babies that can do all of these with ease and my poor bubs struggling. But things are a lot better now and he is starting to progress a lot.
Mamasusu
16-04-2006, 20:56
Two of my children both had hypotonia when they were babies and didn't walk and stand till over 18months - we found a great therapy using laser point percussion therapy in Brisbane...they are now 8 and 9 years and haven't looked back.:smiliedance:
Charlene
28-10-2006, 20:21
I know this is a really old post but i have just found it lol,
My son has hypotonia, he is 2 and cant yet walk.
He didnt sit until 16 months didnt actually sit up from laying position until 19 months and couldnt crawl until 20 months...
Does anyone know of any sites for Partens of kids with Hypotonia?
I have been looking for months and cant find any
Roseythorn
30-10-2006, 08:41
Hi Charlene,
My son also has hypotonia. When my son was diagonised, I to spent ages looking around for information, but didn't find anything. I only could find information for other problems that included hypotonia eg. downs syndrome.
I"ll also be watching this thread to see if anybody has found anything.
Goodluck
JacksDad
02-03-2007, 19:11
Hi all
Have been trying to research Laser Point Percussion Therapy and the only link found through Google lead me here.
My son (now 2.5yo) has always had some problems with physical activities. He learnt to walk at around 13 month but has only learnt to go from laying to sitting and sitting to standing unassisted in the last couple of months. Which all sounds similar to what is described above as Hypotonia
At around 18 months we were told he had Developmental Motor Dyspraxia, but a second opinion from another pediatric physio recently says it is only low muscle tone. The second physio suggested looking into Laser Point Percussion Therapy.
I understand this is an old thread but if anyone has any information, theories or contacts it would be much appreciated.
JacksDad
MamaRabbit
02-03-2007, 22:51
Hi - we started looking into Laser Point Percussion Therapy awhile ago, but are yet to investigate further. My son has a rare brain condition resulting in a little bit of hypertonia and significant development delays in all areas.
I found the attached website: http://www.health-specials.com/901/index.html they are in QLD but may have some suggestions for other states (we are in Sydney).
I also telephoned the following people in Melbourne who were very helpful: http://www.listenandlearn.com.au/.
You could also try contacting the Australian Dyspraxia Association - they are a referral service and can point you in the right direction: http://www.dyspraxia.com.au/
We will look further into the above 2 eventually but for now my 2 y/o is about to start Conductive Education http://www.thespasticcentre.org.au/services/conded/which is supposed to be particular good for motor delays. We start on Monday.
I hope some of this info is good food for thought if nothing else.
Hi
My son is now 18months he to has hypetonia, he is a bottom shuffler, he still cant go from lying to sitting and is not standing without support, He is also a big dribbler We are starting speech therapy soon to help with this.
It nice to read your letter and know others are going through the smae things its nice the hear the positive outcomes as you do worry if they will ever walk.
Bina
My son (12 months) has hypotonia. He can't sit unsupported or crawl, although he just started commando crawling. He's been going to physio for a couple of months now and he has progressed quite a bit.
We also see a speech therapist as he only started on solids recently.
The paediatrition has booked him in for an MRI in a couple of weeks, which is pretty daunting. He's also going to have some blood and urine tests (how do you get a urine sample from a baby?). It's a catch 22 - you want to know why he has it, but at the same time you hope they don't find anything.
Has anyone else's little one had an MRI? I know it doesn't hurt, but the thought of seeing him under anesthetic is worrying me a lot.
MamaRabbit
21-03-2007, 19:12
Hi Missy75, my son had an MRI at just 6 weeks of age, thankfully he slept through most of the scan and the doctors found what they were looking for so there was no need for anesthetic. He did however go under for a digestive procedure he had recently, it wasn't nice seeing him slip under, then watching him slowly come to for several hours after - but he seemed happy enough. I had all his favourite things around him and he was even eating and drinking as per normal later that day.
Re: urine sample, I seem to remember the nursing staff tell me in some cases they can get a sample from the nappy but we unfortunately had the catheter put in, they managed to get it pretty quickly so the discomfort was fairly short lived.
None of it is pleasant to watch but you soon come to see just how tough these little angels are, they really do bounce back from so much. Plenty of hugs and love will see him through.
Keep up with the physio and other sessions. We do quite alot too, it can be hard work but the benefits are so great.
Wishing you all the best for your test results.
MamaRabbit
21-03-2007, 19:24
Hi Bina, I share your concerns about walking too. In fact I worry about a lot of things but if I lose my positivity, my son will have no chance. He relies on me to teach him these things, so in a way it is also about me learning, achieving and putting in the hard work. My son has developed alot since coming off medication in January, we are starting from scratch as he seemed to be quite affected by the meds, but now he is moving in the right direction. We started Conductive Education a few weeks ago and all of a sudden he started sitting on his own unsupported. In 3 weeks he now sits for 30 minutes plus which is absolutely HUGE in our world. I can't wait to see what else he achieves during this course.
:yelclap:
Although Charlie can't yet walk or stand unsupported he is now taking alternate steps when we pull him forward to walk which is a great sign. We are also on the waitlist for a walker, we trialled one for about 5 weeks and saw results. The human body is truly capable of anything. I think it is a matter of finding the right form of education or therapy that is the key. Everyone responds to different forms.
Keep up the good work and I look forward to hearing your stories :thumbsup:
Thanks for your encouragement Elle.
I enquired about the urine sample today - the mention of a catheter had me a bit concerned. They have little plastic bags that you stick on them under their nappy. Phew! They said it's much harder for girls though.
Thanks for your encouragement Elle.
I enquired about the urine sample today - the mention of a catheter had me a bit concerned. They have little plastic bags that you stick on them under their nappy. Phew! They said it's much harder for girls though.
We had to get a urine sample when dd2 was around 6mths or so. The geneticist gave us a handful of the bags as he said it is ridiculously hard to do! It took me about 3 bags until I eventually managed to successfully collect dd2's pee:rolleyes:
With boys their penis can stick right into the hole of the bag, but with girls the bag sticks over the vagina and it really has to be in the right spot for it to work.
Moral of the story is: make sure you get a few of the bags!!
I was given some info only yesterday re Downs Syndrome and it talked about hypotomia. Until then I had never heard of it.
mikenzee also has low muscle tone she sees a OT and Phyiso for it and tomorow she is saaing a orhthapedic surgen for a problem with her legs that would have self corected if she didnt have low tone
Missy75- I had to get a urine sample from my DD when she was about 10mths i went and bought a potty and sat her on it she thought it was a game and it was actually easy for her to sit on it as it really supported her and thats how i got a sample.
My DD is 16mths old she was born with dislocated hips and was placed in a pavlik harness when she was a week old. She was also 6wks premmie and had alittle trouble feeding.
She was in the harness till she was 4mths so she never got on her belly and never moved her legs for the first 4mths of her life. We were told then that she would probably be abit behind with her milestones but would eventually catch up.
she is now 16mths old and sort of commando crawls she pulls herself along with her arms and the tips of her toes but as you can imagine she tires easily.
She has been seeing a physio since she was 1 week old and they have told me she has Lax Ligaments she hyper extends too she really locks those knees in but is slowly starting to work out that she has to bend her knees to get up but still can't do it by herself.
She wants to stand all the time but she just stands in the one stop and if she is inbetween your legs she turns in a circle but doesn't cruise furniture.
She only started talking weight on her legs when she was 12mths and even then not for long it has only been recently she has taken a few steps with our help but she is so unbalanced and she really doesn't have any idea.
She started sitting by herself at 7mths and started rolling at 9mths and now she rolls everywhere.
She was really late holding her head up too i think she was 6mths before she did it properly.
Just in the last few days she has started sitting up by herself from the laying position
She also didn't say her first words till she was 10mths but now she is a little chatter box
What you ladies are talking about i haven't heard of before but there are similarities.
My physio has given me lots of tips but i have come up with a few of my own.
Hope you can use these to strengthen there legs and arm muscles. Since i have started doing these things for DD she has been trying to pull herself up on furniture and standing more. She is also cammando crawling (well her style) more too and has started riding a little push along bike now which she couldn't do before at all.
First
Toilet Training Step you know the ones they put up beside the toilet so they can react.
I get my DD to sit on it and offer my hands to her to pull herself up and then we have alittle dance and i get her to sit back down she thinks its great and does it cause it's a game.
Good for legs
Second.
I bought a mini skateboard from the reject shop i taped a towel to the top to make it more comfortable and i lay her belly on it and she pulls herself around
Good for arms and cause it's a mini she has her knees in the crawling position so she is getting the idea that if she moves her arms she has to move her feet i'm hoping this will give her the idea.
Third
Push along bike i got one that has a support around it with toys so she can't fall out although since using this she doesn't lose her balance anymore and can actually ride it up the hall with out assistants now although i still follow her.
They are great and do a number of things, Helps them with balance and strengthens their legs muscles top and bottom
I don't know if my DD has this condition but she does have all the same problems and i will be booking in to see my Dr to ask if Lax ligaments is the same thing or does she in fact have this condition.
Hope these ideas help your little ones as they have mine.
Anymore info on this condition would be greatly appreciated
Missy75- Why does your DS have to have a MRI?
Doesn't it break your heart to watch your child look at other kids and then look at you as if to say why can't i do that. I know my DD gets very frustrate cause she wants to do it but just can't or doesn't know how.
And my biggest problem is people family and others you don't even know questioning why your child isn't walking yet and they should be and maybe there is something wrong and we should take her to a ped dr. People should mind their business i never stressed that much about why she wasn't doing things until people started saying my DD or DS was doing that ages ago
Yeah I didn't stress either, but then if other people (like my husband and our GP) hadn't worried, we wouldn't be getting the great help we are now.
It can be really frustrating when people comment and try to diagnose him. Or ask have I tried this, or tell me I should be doing that. I met some beautiful mums of premmies the other day (they have the same delays) who told me to just focus on the improvements DS makes each week, as other babies achievements and other peoples comments are totally irrelevant to us. It's so true. We really celebrate every tiny improvement, and the joy we feel reflects the work we've put in.
The paediatrition has ordered the MRI, and blood and urine tests to investigate why he has hypotonia. They did an ultrasound on his fontanel a few months ago which was all clear, but that only shows a small section of the brain, so the MRI will give them a good clear look at the whole brain.
MamaRabbit
26-03-2007, 16:31
Hi Everyone!
SKSTY thanks for the tips. They sound great. We do some of the sitting/standing at one our sessions. We also bought him a bike at Christmas. He is nowhere near pedalling by himself but his balance has certainly improved. Skateboard sounds like a cool idea!
Missy75 we are getting some ION testing done this week to check essential nutrient levels etc. They need a urine and blood sample. The doc said we put a peadiatric pad inside the nappy overnight and in the morning we are able to extract a sample from that (I'll get the test and instructions tomorrow), we then take that to pathology and do the blood. I learn something new everyday!!!
I hope everyone is keeping well.
Thanks but we did the blood and urine tests the other day. We got the plastic bags I mentioned and it was a piece of cake. Blood test wasn't too bad either.
MamaRabbit
26-03-2007, 20:11
I haven't heard of the pads before (or the bags for that matter). Either way I'm pleased there are no catheters involved. Once was enough.
Missy75- Thanks for your advice about celebrating all those small achievements and trust me i do. My husband doesn't stress about anything it's me who stresses he says she will do it when she is ready and i shouldn't push her i'm the one taking her to the physio and the dr and doing all the activities with her to get her going he just wants to play with her.
Rabbitandpoppet- Bree doesn't pedal either she just uses those legs to push herself along.
What is the difference between physio therapy and occupational therapy?
MamaRabbit
26-03-2007, 20:30
My understanding is that physio is focused more on gross motor skills - big movements like crawling, sitting, walking, propping on hands, how the body moves from one position to another like lying down to sitting etc.
OT is more fine motor skills, using the hands, pointing, holding, writing, turning, waving, tie shoelaces etc.
Thanks for that it would make sense.
Do you do occ or phsyio or both?
DS does both. Although his fine motor skills are good, he has a touch sensitivity which is why we see the OT.
MamaRabbit
27-03-2007, 10:35
We see an early intervention group in Sydney called Lifestart - they combine OT/Speech/Physio in most of their sessions, but we also have one on one sessions of whatever is most needed.
Missy75- What is touch sensitivity?
RabbitandPoppet- Did your ped Dr refer you there?
Touch sensitivity means that he's overly sensitive to the feel of things. We all have things we don't like the feel of (eg. the texture of tofu, the feel of sandpaper...) his sensitivity is just more extreme.
It's been a real struggle to get him to eat, although that is partly due to the hypotonia and partly because he hates the feel of the food (still eats totally pureed).
He used to use his feet like hands but when we found out that, although cute, it was a hinderance, we had to discourage that.
He has improved greatly. He wasn't a cuddly baby, always prefered his own space. Now we get lots of cuddles.
MamaRabbit
28-03-2007, 15:34
Hi SKSTY - the Physio and OT dept at the Childrens hospital suggested I contact Lifestart. But I don't think you need a referral to put your name down. They will do their own assessment for suitability.
Check out their website if you are interested: http://www.lifestart.org.au/
There is another place called Learning Links which I believe does the same thing but cover the areas Lifestart doesn't (that is if you are in Sydney): http://www.learninglinks.org.au/
I do pay for these services, there are free services available but I chose them because I was guaranteed sessions each week DADHC was less frequent. They do receive some government funding so the fees aren't too over the top and they also do a lot of fundraising to help keep fees down.
Hope this helps. We have found them pretty good. They also run a playgroup in addition to our regular session which is great as it is run by physio's, OT's, Speechies, Special Educators so it is like getting another session. You can attend playgroup even if you don't receive other services from them.
Let me know if you need any more info.
Elle.
RabbitandPoppet- Thanks for all that and yes i'm in Sydney and would love to find out how i get into the play group?
MamaRabbit
29-03-2007, 10:58
Hi Sksty, have a look at this link and see if there is a group near you. http://www.lifestart.org.au/category/lifestart-playgroups/
Learning Links operates in different parts of Sydney so you may find they are closer to you. Not sure if they run similar playgroups but the services they offer look much the same. Worth contacting them to see if they have an open play group.
countrygal
30-03-2007, 15:58
Hi everyone,
Firstly can I just say that hypotonia isnt actually a diagnosis. It is a condition.You can have syndromes and other diagnosed conditions and the things related to these are symptoms or conditions.
My DD whilst having a routine check at 7mths old was found to have hypotonia. At first the peaditrician thought she may have muscular dystrophy. She had an MRI at 13mths old which showed to be normal. She also had an EEG at about 2yrs old which also showed normal.
My DD didnt sit up unsupported until she was at least 18mths old she didnt crawl on all fours until she was 3. We have had extensive genetic testing and bloods,urine for lots of different syndromes and everything has come back negative or normal.My DD is going to be 5 in June and she is undiagnosed.She has Global Development Delay.She also has possibly Epilepsy and she has an Intellectual Disability.
I have seen a few different peads and they all have had this wait and see game as far as my DD goes. They didnt know if she had a muscular related problem or a neurological one.
They think that her disabiltes are because of a neurological problem they just cant find what it is. She is an enigma to them.
Forward to today. She doesnt talk but makes lots of noises and sounds and we are using PECs which is going great guns.
She doesnt walk but can stand for about 3 seconds on her own. She wants to walk but it is such a struggle to put everything in motion. She can climb up on anything and she can pull to stand but thats about it. She now has a Rifton gait Pacer walker that was kindly donated to us through a local Lions club which she loves using both at home and at Kindy. She wears her AFOs (ankle foot orthotics) whilst using the walker. She can cruise holding on to the lounge.
To look at her you would just see a normal looking and cheeky girl. Sometimes because she has the low muscle tone in her face she often looks as if she has just woken up or is very tired.
Her hypotonia has been assessed as moderate to severe.
We get services through Disabilites SA and we see a OT,speech and physio.
My DD still drinks out of a babies bottle we are trying a sipper cup but it has been a very slow process.
She still needs help with feeding but she eats finger food style and she eats anything.She loves her food.
She is still in nappies as well and TT looks to be a long way off still.
She needs help getting into the bath and out and I do quite alot of lifting getting her in and out and up and down from things.
The scary part now is that in July she starts school. She will be going to a Special School.
The best thing we can do with our kids is to give them lots of love and support. Dont ever think you are not doing enough for them because you are. My DD has certainly turned my world upside but she has made me a better person as well.
My phyiso sees alot of kids with hypotonia and with Global development delay and yes she said most of them are walking and talking. She thinks in our case that my DD disabilty is somehow realted to a neuro problem.
Thanks for taking the time to read my ramblings.
Goodluck with your children.
Cheers
JO
MamaRabbit
30-03-2007, 20:11
Hi JO,
Thanks so much for sharing your story, I found it interesting to read. My son has a rare neurological condition, he turned 2 in January but I could relate to much of what you had experienced. In fact he only started sitting at the age of 2 when he came off his meds. I often wonder where he may be at 5, will he take off now that he is off the meds and make up a little bit of ground or will those brain messages always do it tough and continue to be a slow but steady climb. Or will things stall all together? We'll just have to wait and see and continue on with our research and the early intervention and try to have as much fun along the way.
We have been looking into biomedical therapy the last few months and are about to get my son's nutrient levels tested. It is an expensive process but having his body at it's optimum health may help to clear up some of the brain messages. There has been some degree of success with this treatment. Either way, we are not expecting miracles and it won't harm him so nothing ventured, nothing gained. At least we can say we looked into it and gave it a shot. We are also waiting for an appt at the Physical Disability Unit at the Childrens Hospital to see if we might be candidates for Botulimun treatment (Botox) or another of their rehab programs, apparently they have had some success with children with CP who have troubles walking etc. Not sure if we fit the bill but again we are just looking into all options in addition to all the Physio/OT/Speech.
It would be good to hear from you from time to time to see how both you and your DD is getting on.
Cheers,
Jo- wow you are amazing person and your daughter sound like a special little person. Sometime we just need to know why so we can move on i know thats how i feel.
I hope that one day they can tell you why and maybe then have some answers for you but like you said you give them the best you can and really the rest is up to them.
Thanks Jo, and all of you, for sharing your stories. This is all fairly new to us, so although it sucks what all your kids are going through, it's comforting for me to know we're not alone. Our physio doesn't have a playgroup or group sessions for DS age group, so it's hard to find people in similar situations to talk to.
I didn't imagine that DS could still be learning to walk at 5, so that was a pretty scary thing to read about your little girl, but your strength and positivity are inspirational Jo.
How do you all deal with these situations?...
DS is mostly a happy, sweet little boy, but he can be a whinger (apparently his Dad was the same). At playgroup he whinges or cries almost as soon as any other bubs/toddlers come too close. I think it's because he can't defend himself or get away and he must feel intimidated. I 'try' not to rush to his rescue because I want him to learn how to get away on his own, and I don't want him to grow up to be a 'mummy's boy'. But then I know kids with hypotonia can hold back from trying things because of the fear. If I don't rescue him and he gets hit or sat on by a bigger kid (which has happened quite a few times) am I adding to that fear? Am I making him scared to be around those kids because he thinks I won't help him?
I do rescue him, I just try not to do it too quickly.
missy i sent you a pm :angel:
rollercoastermum
12-04-2007, 19:54
Three of my children have hypotonia.
One isnt as bad as it used to be but the other two are still quite bad.
My 8yr old son is the one who is much better.
My 11yr old son is very floppy and he also has global developmental delay and mild autism.
My 7yr old daughter has the low muscle tone/hypotonia and is also hypermobile in her hips, knees and ankles.
She also has issues with her bowel and is probably related to her low tone as she doesnt seem to feel the sensation to go to the toilet and use her bowels.
All children have had physio and my Daughter has just re-started it again recently.
She has poor balance as well and we need to work on her to not W sit as this makes her hips worse.
Hi all,
I started this thread back in Apr 05, I can't belive it is still going. I am very pleased that everyone issharing stories and helping one another.
Miss75: I know your fears, my son is 3 and I found he is an easy target for rougher kids. He also doesn't like to climb and gets frightened
Rollercoaster Mum: We are trying for a 3 child now, with both of my children having hypotonia it is a little scary, but I have managed fine with 2.
My two beautiful children are coming along nicely. My eldest boy who is 3 1/2 is now toilet trained. He has trouble holding pencils, climbing, jumping, but has improved greatly with physio. But he has such a loving and gently soul, I think this can also be a set back because he is so easy going. But I wouldn't change him for the world.
My little girl who is 19 months is unreal. Her hypotonia was worse then my son, but her determination and personality is unbelivable. She won't be left behind for nobody. She attempts everything and keeps trying and trying. We were doing physio with her up until 2 months ago, but physio said they only want to check on her every 6 months as she is fair exceeding expections. She is a very bright little girl for her age. She can count to 10 by herself and already puts 4 words in sentence, can put 5 piece puzzles together.
Well I had better go and get breakie ready.
All the best
Grace3
Rollercoastermum:
I forgot to ask, mention. When our 2nd child was confirmed having hypotonia they were suprised and said you don't see that many families where both children have hypotonia? Did your family doctor, Paed or physo mention anything like this?
Better go again.
Have a great day everyone.:wave:
Grace
yes hyptonia is genetic. my ds2 looked like he had it too so they did very basic testing as they said his brother had it so he could have it. but 5 and a half months he is trying to crawl so we were lucky :yes:
and i agree hyptonia is a condition but sometimes they never get any diagnosis like my son, so wen people ask i tell them he "had" low muscle tone. to me he has come in strides and is totally equal to peers now. we repeat pre school and it made the world of difference
Thanks Grace.
DS had his MRI about 10 days ago and it was all clear. :smiliedance: Everything's in working order.
He also seems to have gained a heap of confidence in the last couple of weeks and we're seeing big improvements every day. It's really quite amazing. I can't wait until his physio sees him.
Thanks Grace.
DS had his MRI about 10 days ago and it was all clear. :smiliedance: Everything's in working order.
He also seems to have gained a heap of confidence in the last couple of weeks and we're seeing big improvements every day. It's really quite amazing. I can't wait until his physio sees him.
I would do a similar thing when I went to physio. We would work really hard and I was keen for the physio to see them again so they could see how well they were doing.
Fantastic news Missy 75 about DS :yelclap:
Hi All
I havent checked here for a while as we have had a busy month a roh has developed eplispy and was in hospital a bout a month ago he had a wealth of tests most of which are clear we are still know closer to knowing what is causing the the seizures, he is now on medication for this I must say he is a lot more focused now We think he may have been having little fits for a while. so we are hopefull his development may come along now. This does worry me that it may be linked to other delays ah will day by day he is a great kid with a beautiful personality this keep me going great to be able to share and here other stories.
Bina
matty's mum
30-04-2007, 20:15
Hi Bina
Sorry to hear that your no closer to finding the cause for your little one having seizures.
I hope the medication works well, take care.
Hi matty mum
Thanks he is going ok this far, how old are your children & how are they going?
You are right all chn are special I have a very special 3 year old as well. every child is a gift
i know this thread hasn t been used in a while but i hope some one can help. as ive previously mentioned ds1 who is now 5 and a half had low muscle tone. he was a "floppy baby" had to hold him like a newborn for ages etc, poor head control the works.
fast forward to now ds2 who is 6 and half months loves standing but cant sit or crawl (not even commando)but its not because he is floppy, its almost like he is too stiff and chatting with the ehcn today she said some things he has are characteristics of hyptonia, such as pref to stand, arms constantly out to the side, but isnt hypotonia floppy muscles not stiff? i had a friend who's son was stiff and it turned out to be severe autism. please someone put my mind at ease
thanbks guys
i know this thread hasn t been used in a while but i hope some one can help. as ive previously mentioned ds1 who is now 5 and a half had low muscle tone. he was a "floppy baby" had to hold him like a newborn for ages etc, poor head control the works.
fast forward to now ds2 who is 6 and half months loves standing but cant sit or crawl (not even commando)but its not because he is floppy, its almost like he is too stiff and chatting with the ehcn today she said some things he has are characteristics of hyptonia, such as pref to stand, arms constantly out to the side, but isnt hypotonia floppy muscles not stiff? i had a friend who's son was stiff and it turned out to be severe autism. please someone put my mind at ease
thanbks guys
Hi,
Both of my kids had/have hypotonia. My kids never crawled till they were 14 months. My son never started walking until he was nearly 2. Both of them had different degress of floppiness in diff parts of their body, if you know what I mean.
Do you have a good family DR you can go to, and have
a talk or a pdtrian?
Sorry I am not much help, maybe someone else on the thread can help.
Grace
luckily :no:, he was also born with other problems so is seeing specialists next week for them, so i can ask them. i just dont want him to have something else wrong iykwim
luckily :no:, he was also born with other problems so is seeing specialists next week for them, so i can ask them. i just dont want him to have something else wrong iykwim
Unfortunately you can't do anything if there is, but I know what you mean.
Keep positive and wait to you see your specialist next week.
Let us know how you go
Grace
Hi Sue
HypOtonia is what your first one had, but what the nurse mentioned could be hypERtonia - basically the other way around. High muscle tone. I don't know much about it though.
Good luck.
Mel
yes I have heard to of hypertonia as more stiffness It is quite normal for a chid of six months to want to stand though and it is also very normal for a child not to sit unto 9 months cant see the licks here to autism as this is more behaviours and social skills but am no expert I am more worried about my child having autism as he has some repetive behaviours but not bad social skill so am unsure
good to get it all checked out
bina mum of
roh 16.9.05'
Li 29.9.03
owensmommy
16-04-2008, 11:35
Not sure if you are still checking, since it seems to have been awhile back that you posted. i have a child who was just diagnosed with hypotonia and now I am in the same boat you were in. I would really love to speak with a mom who has been through it. I have so many questions.
Hi owensmummy
I am glad you bumped up this thread as my son has just been diagnosed with hypotonia as well and I am interested to know more about it.
Hopefully some of the ladies on here can help us find out more information about it.
Take care
Carolyn
kiwibird27
16-04-2008, 19:19
My daughter has it too, It's part of her genetic disorder, come join us in the special needs thread!!!!
owensmommy
17-04-2008, 04:30
I am really glad I came across this. How old is your little one with hypotonia? My guy is going to be 1 next week. I have been trying to find some positive information regarding hypotonia, because a lot of the information I have been reading is scary! It's great to be able to communicate with other Moms who are going through the same thing.
We discovered Owen's low muscle tone at his 9 month check-up. I had not really noticed. We did noticed that he was very laid back and easy going, we thought it was more of a personality thing. My husband I and would joke that he was our lazy little baby. But at his check-up the ped. said she was a little concerned that he didn't want to bear a lot of weight on his legs. So, anyway we ended up visiting a Dr. of Physical Med. and he is now in physical therapy. He is beginning to crawl in just the last few days. He pulls up on furniture and cruises a bit. The physical therapy has helped so much. I am so glad that we got him started on it.
owensmommy
17-04-2008, 04:32
I don't know how to navigate this site. I just came across it when doing a search for hypotonia. Is there another place to go to get more info?
kiwibird27
17-04-2008, 07:10
Hi, My daughter is nearly 2 and she has a genetic disorder known as Congenital disorder of Glycosylation 1a. Hypotonia can happen for alot of reasons and I would suggest NOT googling it, cause there are so many causes u will probably freak yourself out. Basically good Physio , OT and persistance is the only thing to do!!!! If u go further down to the special needs chat section there are more parents down there that can help!!!
LivinOnAPrayer
17-04-2008, 16:32
lol, yes i agree, DONT GOOGLE!!
My dd is 20 months and has hypotonia. She's got other sn issues too so its just one of many, but i tell ya what, having to carry 9kg (yay :smiliedance:) of 'dead weight' is taking its toll!!
Kids with hypotonia develop a bit later and it cant be 'cured' but there are alot of things to counteract it. We see OT and physio as well as ortho's reguarly.
joyandhope
27-04-2008, 04:16
Hi, I have just registered and this is the first time I've used a discussion forum. It has been great reading some of these posts as I've been feeling so isolated. I have twin boys, 16 months, who are very hypotonal, can't sit independendly, crawl, walk or babble yet. They aren't diagnosed although they've had MRI's, EEG's and tons of other tests for genetic and metabolic disorders. We don't know what the future will hold for them and I'm so scared that they'll end up in a wheel chair unable to talk. It would be great to hear more good/hope inspiring stories from parents who've experienced similar things. :)
LivinOnAPrayer
27-04-2008, 06:14
hi there! welcome to bubhub!! What are your boys names??
My daughter Alex has had all the mri's ect and still no answers either. It makes it hard when they cant find a reason. Were your boys full term? :hugs:
joyandhope
27-04-2008, 19:30
Hi there, thanks for the welcome. I actually didn't realise there were 7 pages of posts and only saw the first page! I can't believe how many mothers are going through this same thing. Its very comforting.
My boys, Dov and Lev are identical twins and its alluding doctors as to what the cause of the problem is as its so strange that they would have exactly the same condition.
To make a long story short, they were born at 37 weeks, smiled and made eye contact only when they were 4 months, at 6 months weren't holding up their head at all, we took them to the pediatrician and so began a long long long road of doctors, specialists, tests and research. They kept many of their baby reflexes that should have disappeared after the first few months - until they were a year old.
We haven't found a genetic disease and we're doing another scary test tomorrow to look for something extremely rare that we have to send the blood over to the US to get analysed.
In response to one of the mothers before, they have hypotonal and hypERtonal problems. They are floppy in their neck, back, stomach etc but stiff in their arms, hands and legs. Its hard for them to manipulate objects as their hands are often in fists and fingers very stiff and inflexible. Nobody seems to know why this happens although we've heard from a couple of therapists that its possible that the stiffness is a reaction to the hypotonal condition... this would make sense.
We are taking them to hydrotherapy 3 times a week and physio 4 times a week. They have also seen OT's and Speech therapists who have given us advice on how to best play with them. Both seem to be helping, but very very slowly.
Its so hard keeping the 'hope' (hence my username) and also making sure we have a joyful happy positive house as we also have a 3.5yr old girl (who's very strong).
I'd be interested hearing how other mothers cope with the emotional struggle of staying positive and hopeful despite needing to prepare yourself for the 'worst' and also being OK if the worst happens...
Hi To All,
Wow I am so amazed after I read all the 7 pages. My DD was diagnosed with low muscle tone at 8 months by a ECHN. In reading everyones story maybe I am one of the lucky ones. My DD was referred to a pead physio and has been having physio ever since. DD was sitting up 7 months, commando crawled at 6 months followed by proper crawling at 7 months. Standing up and walking holding onto furniture at 12 months and then took her first steps at 16½ months. DD is having troube with the concept of jumping at the moment and I have to try and get her to jump by the age of 2. I think I might go and see the physio across the road and see if there are exercises that I can do with her. With speech I had a screener in January and the waithing list is 5 months so I should being seeing a speech pathologist in May/June. But in saying DD is saying a lot more words mainly single words sometimes a few two words merged together about 60 at this stage. DD is also starting to recognise things in books now too. DD has Glue Ear so maybe a little bit behind in talking. Sometimes I tend to think it has something to do with me as DD is not saying too many two words together and I was told she is supposed too.
DD is also on the waiting list for Occupational therapy as well.
I went to see the pead the other day and he thinks that DD is developmentally delayed and I should go and have genetic testing done. He also thinks DD is too young to have an MRI. However, at Westmead I have found out they have CT Scan that takes about a 1 minute so I will be making some enquiries tomorrow.
Kim
Hi,
I haven't read all the posts in this thread. But was told by the phsyio two days ago that my DD has low muscle tone.
I googled half an hour ago and have just calmed down now, have been freaking out for awhile thinking somethings not quite right.
We have her next pead appt on Fri arvo, but my husband can't come, boo hoo!
She seems like she may start crawling any day, and i think the physio basically said she was about to start moving. She is eight months old.
She can't situp by herself, but she can sit if i put her in a sitting position, for a minute or two, if there is a toy to hang onto or play with.
She has never been very good on her feet ie weight bearing.
Thinking about it, i have had lots of problems on and off with b/f - and was talked into supp with formula when only two or three weeks old to help with weight gain.
Here's a quick run down of some issues - past/present -
I was induced (oxytocin), pain releif - gas and peth, at 41 plus 9 days - low fluid levels approx level was 5.
large baby - 9p 12 ounces (4.42kg) at birth.
Length 54cm, head 36cm.
Lost more than 20% before release from hosp at four days of age, weighing 3.8kg approx.
Did get down to 3.6kg in coming week or two.
She was losing then putting little bit back on to and fro, until reached birth weight at about 6 weeks of age.
I had midwifes and com health nurses visiting us at home for 6 weeks! after her birth.
Including a short hosp stay - vomited blood, due to cracked nipple (feeding prob's), discovered she had reflux (20%) after testing done for 24 hours, sleep apnea, had a couple of times where they all came running due to low oxy levels, was on oxy for couple of days and antibiotics (the scariest four days of my life), she had only been home for 2 nights before she was admitted to the childrens ward, at seven days of age.
Talipes (club foot) - both feet, one worse than other, discovered by midwife at birth, referred to physio, who we have seen ever since. Who told us low muscle tone this week.
Flat head - caused by neck muscles/looking and favouring one direction ultimately caused this according to a prev physio visit. I had been concerned about this from 2 months of age and the fact her neck seemed to hurt her the different ways you'd hold her, but peads and drs, chn didn't listen.:banghead: So it wasn't till about 5 months that the physio started helping us with this too.
Sorry for rambling. I can't think of all the other stuff atm, the little darling has woken up.
Oh, she has reflux, meds from two weeks to four months old, trialling a break - seems to be going ok.
Just wanted to know if other people had similar experiences and wanted to share their concerns and advice.
DD is starting LDC next week - two days a week, and i am going back to work two weeks after she starts considering she settles in well, my work are fairly flexible.
DD only weighs about 6.2 or 6.4kg and she is about 66-68cm long and head about 43cm (big weird shaped head). She is a beautiful baby and i am not saying this to be biased, strangers always stop and comment. I think its the red hair, big eyes and cheeky smile.:raspberry:
She was in the 97th percentile at birth re;weight and now in between 10 and 25th from memory, my family gp is moderately concerned and wants to monitor and possibly do tests in future if she crosses two percentile bands by 9 months. But pead said she was thriving in last appt in jan.
Basically she weighed 5.9kg at three months, same at four months (but did grow 5cm longer in that month) and now about 6.2-6.4kg. Hasn't been weighed for a month approx.
She has been putting on around 100g a MONTH!
Baby nurse told me to feed her yoghurts and custards to try and put on some weight, since doing this she hasn't been weighed.
I made the decision about three weeks ago to return to work and felt really good about it, but now i just don't know. I think it will do her the world of good and may be just the thing she needs to start crawling, ok DD, you have four days to do this at home, before you start, yo go girl.
Anyone pls feel free to pm me with support/advice. Thanks.
Hi All Mums and Dads of kids with hypotonia. I have recently found out my 18mth old twin boy has hypotonia. However, he hit all his gross motor developmental milestones on time. I am very confused. I am told he has low muscle tone, yet he has great strength as he can climb furniture etc. BUT he keeps injuring himself, eg rolled ankle this week, as the joints are so weak. He is a big boy for his age. He walks with his legs quite exaggerated apart; thrusts his stomach forward; arches his back; and pulls his shoulders up. He falls over very easily and doesn't seem to catch himself as he falls. Yet he is happy and runs around. The physio said it is just how he is and they cannot give me any further diagnosis until at least 2 yo to see if it worsens or not. I am told there is nothing they can do to improve the situation. I am so scared that it will develop into something else as he grows older and reaches toddler world. My other two boys have their own issues - my 2.5yo has SID and ODD; and the other twin has speech delay. Could everythign just be related?? Any advise would be appreciated.
Hi To All,
I went to see the pead the other day and he thinks that DD is developmentally delayed and I should go and have genetic testing done. He also thinks DD is too young to have an MRI. However, at Westmead I have found out they have CT Scan that takes about a 1 minute so I will be making some enquiries tomorrow.
Kim
to have an mri they need to be put under general but if bub is healthy there is no reason she is too young. it shows alot more than a cat scan does. my eldest has hypotonia and had a ct scan 6 yrs ago. showed nothin
his brother had an mri a few months ago showed nothin.
Hi All Mums and Dads of kids with hypotonia. I have recently found out my 18mth old twin boy has hypotonia. However, he hit all his gross motor developmental milestones on time. I am very confused. I am told he has low muscle tone, yet he has great strength as he can climb furniture etc. BUT he keeps injuring himself, eg rolled ankle this week, as the joints are so weak. He is a big boy for his age. He walks with his legs quite exaggerated apart; thrusts his stomach forward; arches his back; and pulls his shoulders up. He falls over very easily and doesn't seem to catch himself as he falls. Yet he is happy and runs around. The physio said it is just how he is and they cannot give me any further diagnosis until at least 2 yo to see if it worsens or not. I am told there is nothing they can do to improve the situation. I am so scared that it will develop into something else as he grows older and reaches toddler world. My other two boys have their own issues - my 2.5yo has SID and ODD; and the other twin has speech delay. Could everythign just be related?? Any advise would be appreciated.
dont know about this one. my eldest had low muscle tone, but it was noticeable from early on. couldnt support his head. even now at 6 he still sits with a slump. but sayin that his low muscle tone was mainly in his torso, face. perhaps your sons is in his legs? not to scare you but my friend growin up fell over alot. and it turned out to be VERY mild cerebal palsy. the only thing it affected was it made her clumsy.
did the physio diagnose the low muscle tone or a paed? if its only the physio..no offense to them but i would consult a paed first.
if it is hypotonia only, it only improves with time. my 6 yr old with hypotonia now plays rugby league and almost a black belt in martial arts.
Hi,
I haven't read all the posts in this thread. But was told by the phsyio two days ago that my DD has low muscle tone.
I googled half an hour ago and have just calmed down now, have been freaking out for awhile thinking somethings not quite right.
We have her next pead appt on Fri arvo, but my husband can't come, boo hoo!
She seems like she may start crawling any day, and i think the physio basically said she was about to start moving. She is eight months old.
She can't situp by herself, but she can sit if i put her in a sitting position, for a minute or two, if there is a toy to hang onto or play with.
She has never been very good on her feet ie weight bearing.
Thinking about it, i have had lots of problems on and off with b/f - and was talked into supp with formula when only two or three weeks old to help with weight gain.
Here's a quick run down of some issues - past/present -
I was induced (oxytocin), pain releif - gas and peth, at 41 plus 9 days - low fluid levels approx level was 5.
large baby - 9p 12 ounces (4.42kg) at birth.
Length 54cm, head 36cm.
Lost more than 20% before release from hosp at four days of age, weighing 3.8kg approx.
Did get down to 3.6kg in coming week or two.
She was losing then putting little bit back on to and fro, until reached birth weight at about 6 weeks of age.
I had midwifes and com health nurses visiting us at home for 6 weeks! after her birth.
Including a short hosp stay - vomited blood, due to cracked nipple (feeding prob's), discovered she had reflux (20%) after testing done for 24 hours, sleep apnea, had a couple of times where they all came running due to low oxy levels, was on oxy for couple of days and antibiotics (the scariest four days of my life), she had only been home for 2 nights before she was admitted to the childrens ward, at seven days of age.
Talipes (club foot) - both feet, one worse than other, discovered by midwife at birth, referred to physio, who we have seen ever since. Who told us low muscle tone this week.
Flat head - caused by neck muscles/looking and favouring one direction ultimately caused this according to a prev physio visit. I had been concerned about this from 2 months of age and the fact her neck seemed to hurt her the different ways you'd hold her, but peads and drs, chn didn't listen.:banghead: So it wasn't till about 5 months that the physio started helping us with this too.
Sorry for rambling. I can't think of all the other stuff atm, the little darling has woken up.
Oh, she has reflux, meds from two weeks to four months old, trialling a break - seems to be going ok.
Just wanted to know if other people had similar experiences and wanted to share their concerns and advice.
DD is starting LDC next week - two days a week, and i am going back to work two weeks after she starts considering she settles in well, my work are fairly flexible.
DD only weighs about 6.2 or 6.4kg and she is about 66-68cm long and head about 43cm (big weird shaped head). She is a beautiful baby and i am not saying this to be biased, strangers always stop and comment. I think its the red hair, big eyes and cheeky smile.:raspberry:
She was in the 97th percentile at birth re;weight and now in between 10 and 25th from memory, my family gp is moderately concerned and wants to monitor and possibly do tests in future if she crosses two percentile bands by 9 months. But pead said she was thriving in last appt in jan.
Basically she weighed 5.9kg at three months, same at four months (but did grow 5cm longer in that month) and now about 6.2-6.4kg. Hasn't been weighed for a month approx.
She has been putting on around 100g a MONTH!
Baby nurse told me to feed her yoghurts and custards to try and put on some weight, since doing this she hasn't been weighed.
I made the decision about three weeks ago to return to work and felt really good about it, but now i just don't know. I think it will do her the world of good and may be just the thing she needs to start crawling, ok DD, you have four days to do this at home, before you start, yo go girl.
Anyone pls feel free to pm me with support/advice. Thanks.
theres some similarities between my ds1 and your dd.
firstly i was induced too due to leakin fluid so ds1 was bron virtually fluid free.
he had a huge head that the first thought diagnosis was hydracephales (sp) fluid on the brain. it wasnt that he just had a huge head lol
ds1 is sooo skinny . always has been and im sure always will be. but not a huge eater
but sayin that your dd is doin well for low muscle tone. my son didnt even start to try sittin till 10 months and didnt try crawl till 12 months.
as for apnea..both my boys had/have that. ds1 due to extra large tonsils adnoids which have been removed
ds2 due to malformation of windpipe called tracheolaryngomalacia
ummm as for day care. i think its good for them. just leave a day or 2 free so you can slot in paed appointments physio etc
pm me anytime
Thanks so much for your insight. I have made an appointment with my other sons paed for next week and an OT for 2 weeks time. Something in my guts tells me all is not as it seems. I have always suspected mild CP but all the profs say is they cannot say until after 2. I guess I have the advantage of having his identical twin brother around to make direct comparisons - after all they do share the same DNA. The difference was B received antibiotics at birth - he was also very quiet in utero - I always had ctg done to check on him. I hope it all means nothing really.
Thanks again and your inspiration with the martial arts is just the ticket to bring a smile on a worried mums face.
Cheers
Sarah (29, Dad 30, J 2.5yo and T & B 1.5yo):valentine:
Wow, I cant believe all the amazing stories i have just read until this morning i have felt quite alone, My little girl is 8 weeks old and has been diagnosed with hypotonia since she was 10 days old. She has had every blood test, urine analysis, metabolic analysis, EEG,MRI , cranial U/S, Speech pathologist, and physio and chromosonal disorder testing and no one can come up for a reason why she is so floppy and sleepy, She also has alot of problems with feeding and is currently being fed via a nasal gastric tube as she can only take 5ml from a bottle before getting exhausted. Did anyone elses bub do this? how long does it take to get the NGT out ? She also has congential hip displasia and is in a harness, would this be related to hypotonia? I will have to ask the neonatologist at our next appt.
thankyou to everyone who shared their stories, you have given me some hope and to take joy in her little steps
Emersonsmum
21-10-2008, 13:38
Hi eveyone. Im new 2 this site & when i googled hypotonia i saw this thread. My son was breech & i had 2 have a c/section @ 38wks. When he was born he couldnt move his left arm & his head was pretty much resting on his shoulder they they didnt know what caused it & they said he also had Hypotonia. Eventually he got strength in his arm & his head/neck is pretty much straight. He had every test done under the sun & he had an MRI when he was 11 months. All the results came back the day after his 1st bday & they said everything was normal. :yelclap: The neurologist thinks that because he was stuck in the breech position 4 so long he lost circulation in that side of his body. So now we just have to deal with the hypotonia. He sees a physio regularly & while he has made huge improvements im really concerned about his ankles & knees. They are really flexable & his ankles roll in when he walks. Does anyone elses child have this? I have asked my dr 2 refer me to the Mater hospital because im not getting anywhere at the logan. My son is now 2 & is such a happy lil boy but it is just upsetting 2 c him struggle with things. Im so glad ive found this thread it is good 2 know there are ppl out there going through the same problems. All my family live in S.A so my partner & i are pretty much dealing with the past 2 years dramas on our own :(.
LivinOnAPrayer
21-10-2008, 18:20
Hi! My daughter alex is 2 also and she has hypotonia among other things. she delayed also and has many medical problaems. pm me if you want to chat!
Nates_Mumma
15-11-2008, 14:33
Hi Gals
My Son Nathan *currently 6.5mnths* was diagnosed with low muscle tone yesterday by the Paed Physio.
She never used the term hypotonia at all....I found it when I googled the term.
We've been very concerned about his floppy neck for months but our Paed kept saying no its ok... don't worry he will come good... about 2 mnths ago i questioned him about it again and he told me to come back and have a developmental assessment done and then he gave me a referral to child development services. Got a ph call FINALLY on Thurs and had our app with the Paed Physio yesterday.
She told us that he is dominating the muscles the back of his spine rather than the front ones *i think or if not vice versa* and that his head is asymmetrical and is causing him to dominate one side rather than the other due to the weight etc...
I honestly dont know what to think.. We dont see her til 17/12 now...
would a chiropractor help at all in this case or what?
Hi. I know it's easier said than done, but try not to worry too much. You're in the right hands now, and the best thing is that you're onto it early.
From my experience, doctors and physios usually give you the worst case scenario so don't freak out when they tell you that it might take however many months or years to reach the milestones. Our first appt with the paed he told me that DS wouldn't walk before 2 and it would probably be more like 3 :eek: but he walked at 19 1/2 months.
Don't know about a chiro but I'd wait to see the physio.
All the best to you all. :hugs:
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