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hypotonic one year old Rss

My one year old daughter has been diagnosed with global developmental delay including gross motor delay and she's hypotonic (very floppy) not yet sitting or crawling. She also undergone squint surgery for congenital estropia and horizontal nystagmus which is almost completely fixed thanks to an awesome eye surgeon when my daughter was five months old. We've begun physio for her hypotonia which she is responding well to. She is a delight and I am continually strengthened by her beautiful nature. However, at times I am very fatigued by the great task ahead. I was wondering if there are any other parents out there experiencing the same thing and are having to work ever so closley with their child through every developmental milestone as I am. I am told she'll need occupational and speech therapy as well. It would be good to know that I'm not the only one. I am also wondering if sign langauge would be helpful. PS I also have two healthy children of school age as well.

My one year old daughter has been diagnosed with global developmental delay including gross motor delay and she's hypotonic (very floppy) not yet sitting or crawling. She also undergone squint surgery for congenital estropia and horizontal nystagmus which is almost completely fixed thanks to an awesome eye surgeon when my daughter was five months old. We've begun physio for her hypotonia which she is responding well to. She is a delight and I am continually strengthened by her beautiful nature. However, at times I am very fatigued by the great task ahead. I was wondering if there are any other parents out there experiencing the same thing and are having to work ever so closley with their child through every developmental milestone as I am. I am told she'll need occupational and speech therapy as well. It would be good to know that I'm not the only one. I am also wondering if sign langauge would be helpful. PS I also have two healthy children of school age as well.



Hi Monique,

My DS 5 has Hypotonic Cerebral Palsy - (hypotonia is severe), he also have severe sensory sensitivities and frontal lobe damage.
I definately understand the enormity or keeping up with therapy and everyday care its exhausting. We have done all the early childhood physio, speech therapy, psych, occupational therapy etc etc. Now he is school age its not as full on and they tend to see him at school rather than at home or elsewhere.
They organisation which ashy is registered with in SA is Novita and they run a course (or did in the past) for registered clients called the Hanen Programme which is all about speech. Its fantastic and it teachs you all about communication and gives you practical things to try at home. The course is run by a hanen trained speechy and they work closly with you and your child. It also might be good if you are thinking about sign language as it teaches you about that to and you could decide if its something that is going to be effective for you.
Personally I like using signs sometimes even for ashy (and he has no hearing problems), because of his sensory problems its great as an extra re-enforcement .

Nway if you want to chat or anything feel free to PM me

Cady smile

Hi Monique,

My DS 5 has Hypotonic Cerebral Palsy - (hypotonia is severe), he also have severe sensory sensitivities and frontal lobe damage.
I definately understand the enormity or keeping up with therapy and everyday care its exhausting. We have done all the early childhood physio, speech therapy, psych, occupational therapy etc etc. Now he is school age its not as full on and they tend to see him at school rather than at home or elsewhere.
They organisation which ashy is registered with in SA is Novita and they run a course (or did in the past) for registered clients called the Hanen Programme which is all about speech. Its fantastic and it teachs you all about communication and gives you practical things to try at home. The course is run by a hanen trained speechy and they work closly with you and your child. It also might be good if you are thinking about sign language as it teaches you about that to and you could decide if its something that is going to be effective for you.
Personally I like using signs sometimes even for ashy (and he has no hearing problems), because of his sensory problems its great as an extra re-enforcement .

Nway if you want to chat or anything feel free to PM me

Cady smile
You are not the only one. DD (18months now) was very similar at 12months, she could sit unassisted, but was not crawling or even bearing weight on her feet. She has improved heaps in the last 4months. She is going to physio every week and also seeing speech pathologist and dietician. Some days are great days and there are some days where I worry if she will be able to do the same things as other kidseg skip and jump. Dd is now able to cruise around furniture and will take steps if she holds my hand. progress has been slow, but she is slowly getting there.

PM if you ever need to talk.
Hi Monique, how are things going? We too have two completely normal girls at school, and our 2yr old Ruby with development delay. It feels like it has been a long two years, full of specialist appointments and test after test. Ruby just started walking before her second birthday, she could pull herself up and cruise furniture for a while ... but like everything, she just needs that extra few months that normal children don't, to gain strength and confidence. We have done a bit of sign lanquage, just a few basic signs so she could communicate ... but I have given up on it a little, as she recently had grommets and now that I know she can hear better I'm trying to concentrate on making her say Ta when she wants something etc.
We are in NZ and i haven't really talked to anyone in the same situation. It is hard going, and the bit I hate most is the Drs can't say how Ruby will end up "we really have to wait and see". She is 90% of the time happy and healthy with a cheeky personality, which keeps us positive!
Keep in touch with how you are getting on, Mel.
Hi Ladies, at the end of a very long week I almost cried when I read this post as we are going thru the same thing with our 17 month old son, Liam. He was diagnosed with Hypotonia at about 10 months after being unable to sit unassisted and not crawling, it wasn't until we started seeing the Dr's that I actually realised all the things he was unable to do. He has had so many tests and the dr's have so far ruled out any major impairments (eg. cerabal palsy, autism etc) They say he is about 6 months delayed but I'm scared that he is getting further behind.

He sees our local Paed. Physio & O.T fortnightly and the same at the W&CH every 6 weeks, this week we have also started with a Speech Pathologist too. He now crawls like a pro and can pull himself to stand on almost everything and is starting to take a few side steps but is sooo wobbly and crashes atleast 100 times a day, usually hitting his head forming an instant bruise. His right ankle and foot are severely pronated (rolled in) which is making walking almost impossible, the specialists do not recommend orthodics/splints until they have been walking for a few months but as it is hampering his progress so much he is being fitted for a set next week so fingers crossed this will help him progress. He has very little strength & co-ordination in his hands.

Other than the physical delays do your children suffer from any mental delays or lack of understanding? Eg. Despite trying for months, DS still can't/won't say Ta on receiving something nor will he hand something to me. We have a split level (as do parents in law) with 2 steps and he can go up fine but despite being shown and helped numerous times a day he can't grasp the concept of turning around and coming down backwards, my 1st son (now 3) learnt this very quickly. There are so many things that arise daily....(now crying..)and I just feel so helpless, I know I'm doing all I can and have all the right people backing me but I just feel helpless!

I try not to thing about his future and just focus on the next stage, in our case walking, but as a parent it is so hard not to think about the future and what it holds. I get so upset at the thought of him finding everyday 'kid' things hard and we all know how nasty & hurtful kids can be to others that are different, it just breaks my heart.

Please don't get me wrong, I know that my son having hypotonia is a drop in the ocean compared to the 1000's of kids & parents that are going thru terrible, horrible diseases and conditions...like I said it has been a long week of many appointments with all the Specialists and unfortunately alot of these tend to focus on the things that he can't or is unable to do rather than the small (but in my eyes major) progress he is making.

I have a beautiful, gorgeous, happy and super affectionate little man that makes me smile 100 times a day and for that I am sooo grateful.

[img]http://bd.lilypie.com/Oj53p9.5/.png

haha omg i too am now bawling

I have a 17 month old son with all of the above issues. He still has head lag, really low muscle tone, has jsut started to try to stand but usually only last a few seconds and his feet are so rolled in that his ankle bump bits actually hit the floor when he stands.... we have just filled out the form for the referral to get splints for him.

It has been such a long road for us, as im sure all of you. My biggest fear is that all of this is caused by a fall which i had while holding him when he was only 7 weeks old.... an ABI is being investigated. I have so much guilt that half the time i dont even know what to do with myself when i start thinking about it.

He still has no spoken a single word, and goes babble but only ever single sounds, like da da da da da there is no 'conversation' in it. He is a very loving boy, and definitely a mummies boy smile, he gives me kisses all the time which melts my heart. I have a 3 year old daughter who is amazing with him, she has such a gentle soul naturally and she really cares for him, what makes it extra hard for me is that she is so far advanced with her milestones and always has been that i find it hard to know what he is 'meant' to be doing!

He has no pre-language communication skills, no pointing at what he wants and he is unable to make decisions easily, even when its really obvious! Like offering his bottle and a newspaper he can't decide which one even tho it is clearly bottle time!

I love my little man soooo much, he is a really lovely little boy, but i fear for what his future holds sad I went to the footy a few weeks ago and at half time the litte auskick kids came out and i all of a sudden lost it, it scares me that he might not be able to do that.... and salt in the wound is that it could all be my fault! sad

And if i hear one more person tell me im 'lucky' coz i have my baby as a baby for longer then i may actually slap them, i would give my life for him to be 'normal'

ahh well i prob talked the ears off everyone, thanks for ur time if u got this far....

He has his appointment at the royal childrens in 8 weeks for the department of developmental medicine so hopefully they can give us some answers!!
Sorry its been a while but I have just read everyone's messages and feel very fortunate to be able to read your stories because I realise I'm not the only one going through these difficulties. As I mentioned, my daughter has global development delay and is hypotonic with some sight issues. She is 18 months now and is making slow progress. Every week we get closer to understanding her and how we can help her. Just last week she got glasses for short sightedness.Next month she'll get gromits and perhaps hearing aids. Of course, she has severe low muscle tone. But she is improving everyday. I met a 17 year old girl yesterday who was born with hypotonia and bad eye sight. She is a beautiful girl, quite intelligent and with a great sense of humour. She is attending high school. She leads a normal life, despite having a few odd party tricks due to her over flexible arms. The only thing she can't do is long distance running! Her mum told me she didn't walk until she was 2 1/2. She was also in plaster for hip displacia (sp?) at birth. She didn't crawl for ages either. She rolled everywhere. I guess what I'm trying to say is that if we put in the hard yards now, our children will be able to catch up. Just this week, a friend who I met on this site is starting up a hypotonia play group in Marrickville. If you want more info, just DM me. Hang in there everyone and focus on the small victories our lttle angels reveal to us everyday!

Sorry its been a while but I have just read everyone's messages and feel very fortunate to be able to read your stories because I realise I'm not the only one going through these difficulties. As I mentioned, my daughter has global development delay and is hypotonic with some sight issues. She is 18 months now and is making slow progress. Every week we get closer to understanding her and how we can help her. Just last week she got glasses for short sightedness.Next month she'll get gromits and perhaps hearing aids. Of course, she has severe low muscle tone. But she is improving everyday. I met a 17 year old girl yesterday who was born with hypotonia and bad eye sight. She is a beautiful girl, quite intelligent and with a great sense of humour. She is attending high school. She leads a normal life, despite having a few odd party tricks due to her over flexible arms. The only thing she can't do is long distance running! Her mum told me she didn't walk until she was 2 1/2. She was also in plaster for hip displacia (sp?) at birth. She didn't crawl for ages either. She rolled everywhere. I guess what I'm trying to say is that if we put in the hard yards now, our children will be able to catch up. Just this week, a friend who I met on this site is starting up a hypotonia play group in Marrickville. If you want more info, just DM me. Hang in there everyone and focus on the small victories our lttle angels reveal to us everyday!




Hi Ladies,

Its great to hear you so up-beat monique. Its definitely a roller coaster of emotions and experiences having a special needs child.
I agree with you when you say focus on the little victorys. It may not seem like much to others but boy does it feel good when they learn something new or accomplish something you've been working towards for such a long time. Theres nothing fast about hypotonia and its hard to stay focused on the good stuff when progress seems to take forever - but just remember that it will happen!!! and all the therapy and effort you put in now definitely pays off in the long run. And when those little victorys happen its even more special.
My DS didnt walk until he was 3 and a half. He is six now and he is still walking, both his legs are perminitely in splints and he falls all the time!! but he walks!!

I*Love*My*Bub
What is a ABI investigation??? Are you afraid that a brain injury is the underlining issue and the hypotonia a symptom of a brain issue?? Im really sorry to hear you are suffering so much uncertainty. The hardest thing I found was not knowing. I think its normal to feel like as a parent you've caused it somehow or that there may have been something you could have done to prevent it when in reality there wasnt. I know I went through all of those emotions. I really hope you find some sort of answers and some reassurance that it wasnt your fault.

I've also had people tell me how lucky I am that my DS wasnt walking yet because once they start walking you wished they'd stop because they get into everything. This used to really upset me - and after a while I would start telling them that actually no I just wantedmy son to walk and I would follow him all day if thats what it took. I think people just dont know what to say sometimes and the wrong thing just comes out. I think its important for yourself and your own sanity to speak up - maybe you could just say that as you wrote you'd give anything for your bub to be 'normal'. I dont think its rude when its said right,and I think its important so your not stewing on it later.

Newtothisbabystuff
My DS was fitted for splints before he could walk. I was warned that they would not help him to walk or 'make him walk' but you know what - not long after he had them fitted he started walking! I think they gave him more stability and confidence. He still falls over all the time but he definitely walks much better with them on and he is now six. He had them fitted when he was 2 - almost three. His ankles also roll right in. I think its looks a bit horrible, it almost looks like he's walking on his ankle/side of foot.


Anyway as I've said before im happy to answer any questions and feel free to PM me. I look forward to hear how your all doing.

Take Care
Cady
It's been a while since this post was started and I was just wondering how everyone was getting on?
Our DS is now 4 weeks off his 2nd birthday and is doing well. He is the most beautiful little man and we are truley blessed to have him in our lives.
He has been in a ankle/leg splint for 7 months and is cruising the furniture like a pro, he is starting to get his balance and confidence enough to let go and stand alone for a few seconds however like his other milestones, although walking seems soooo close I think it will be a while off yet.
Only last week, after months of testing he has been diagnosed with a Chromosome 22 Deletion, it has been attributed to his Global developmental Delay which at the moment puts him about 12 months behind where he should be. It's a horrible thing being so uncertain about yor child's future and what may or may-not become of them, and if I'm told once more "we'll just have to wait and see" I'm gunna punch them in the nose!!

I hope that all your babies are well and making progress towards their next milestone....just remember that as slow as that progress may be it is progress and a step in the right direction.

Would love to hear how you are getting on.

Mel xoxo

[img]http://bd.lilypie.com/Oj53p9.5/.png

I know its been a long time since these post but I have a 14 month old with hypotonia and I am going out of my mind with worry. I knew from early on that something was not quite right and was told by drs, family and friends she was just a baby and give her time. She has been having physio since 4 months old. She sat at 7 months, rolled at 13 months. She can't go from a lying to a sitting position or stand to pull. She will weight bear if someone holds her hands. She use to hold onto furniture but is now refusing to do so. She babbles a lot and says muma, dadda and 'more'. She is having an MRI in two weeks. I know that no one can tell me what her furture holds but its driving me crazy and its all I think about. I would love to hear how you little ones are going and any tips/advice/exercises would be great.

Michelle x
Hi Ladies

I have an 22 month old girl who was diagnosed with Mild Hypotonia and also Autism. She was diagnosed at 16 months and it was the biggest shock for me and my husband. We had never even heard of hypotonia and didnt know a single person with it or thing about it. Autism we had heard of but that was the extent of it.

She was progressing completley fine up until about 6 months when she just stopped advancing. She held her head up early and rolled early as well so when she stopped we were told all kids are up and down and not to be concerned as she was probly just stubborn and would start again soon.

We got a referal after her first birthday for an appointment with our paedtrician as she was sitting, weight bearing, was slightly floppy, wasnt chewing would only eat very soft things. While seems obvious to other people and me now as i read/write this, but as a first time parent we didnt know and also didnt want to think there could be anything wrong with our baby either.

After finally seeing our paedtrician several times doing several blood tests wait for results then do more tests it took 4 months for them t diagnose her with autism. Looking back on home videos the charastics of autism developed from 9 months onwards her eye contact slowly dissapered speech got less accurate which i find hard to determine as what speech is perfectly accurate in a 9-12 month old

Once she was diagnosed and i cried for days i couldnt even talk to anyone about it or id just start crying and even just thinking about it would make me cry. I just wanted to go to bed hide under my covers from the world as this was a big horrible dream and i was in complete denial and i wasnt ready for sympathy or hearing "it could be worse" and other such phrases, i was miserable. My husband took it better than i did and he was amazing.

After a few days of what feels like just going through the motions of parenthood i was thinking of all the things that she cant do and then it hit me that this is bullshit and no one was gona tell me what my kid could and couldnt do, who are they to say what my child will be like and what she is capable of!?

So like any crazy obsessed mother i hit the internet, library, read blogs, went to coffee groups and got first hand knowledge from parents dealing with it longer than i have. Its hard to hear some stories and others give you hope. Some attend main stream school and have teacher aides 1-2 days a week others with hypotonia play in sports teams and ive met one girl who was diagnosed with severe hypotonia as a child she was incredibly floppy and shes now on the school track team grin.

The children that seemed to be doin the best were the mothers who were past they why me phase(I still have those moments and then I stomp on them!)they were upbeat and positive and were focused on giving their kid every possibly advantage that they could to help them in life. But what they stressed to me was the importance of taking time out for yourself as it can be so full on, as your no good and neither is your patience if your tired and cranky and everyone knows patience is a key thing here.

As for me and my precious little poppet, after she was diagonosed a month later she was been receiving therapy from an occupational therapist and also does hydrotherapy on a weekly basis and we also take her to the pools for extra help and also do excersises with her at home as well.

She is 22 months can sit, roll, crawl, weight bear on her legs but hasnt learnt how to pull herself up on things. She babbles and says mum, nana, dad-dad and ta. We can say "up" to her and she puts her hands up or will put her hands up to be picked up. Also knows that when i hold socks and shoes up she puts her feet in the air and waits for me to put them on and giggles the while time. Also knows that when i have her hat and sunglasses in hand its time to go on her swing so will sit very still while i put them on.

So everything we do with her we have one word association, our occupational therapist and paedtrician and family all know the words so we can keep it the same. We also use 1,2,3 slow counting to teach her patience so if shes upset and wants something once she hears us counting she knows she will get it on 3 and will wait.

Not an easy thing to teach. We started by teaching her in the swing because she loved it so much, we would push her once, stop, then she would get grizzly and we started counting 1,2,3 and we did it over and over again more times than i can count and now shes got it. Working on extending it further no luck as of yet.

Although i have to say the biggest help that has increased her leg and trunk strength and has gotten her used to standing would be the standing frame we got on loan from our occupational therapist. Just had it adjusted today as she has enough body strenght so straps were removed around the chest area when shes in it. So just around the butt now to help strengthen her legs. She absolutly hated it at first it was like trying to wrestle a cat in the shower. Now loves it will crawl over and tap it till i put her in it, likes to stand and gets excited when shes in it or im holding her hips and she looks at her feet, when her whole face lights up makes every little struggle worth it grin

As for food thats the biggest battleground of all aside from taking 30-45 min every meal time as shes such a slow eater/not interested/stubborn or all of the above. Shes has a slight chewing motion and has inmproved alot in the texture we give her she can have semi solid food but its the hardest battle of all. Was told giving her peanut butter will help increase the throat muscles as its a lot of effort to move around the mouth.

She is also haveing an MRI done on the 1/03/12 and while she is sedated they are also doing a lumbar puncture and taking more blood for blood tests *sigh* at least she will be sedated.

So if anyone has suggestions on the food front or anything else id be eternally grateful, as you can read and talk to people everyone has differant ideas/suggestions so im open to anything and everything or if you just want to rant like i did feel free, you always feel better afterwards grin

Gosh sorrys its so long. Didnt realise I had ranted so much till i got to the end smile
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