panicking mum alert - anyone had diagnosis of mild benign congenital hypotonia>

[mommie]

A paediatrician has mentioned this as a possible cause of my dd's late walking (she is 16 months and still doesn't like standing, let alone walking) and rather stupidly i have got onto the internet and into a panic about this condition. anyone any experience of it?

Hi Mommie,

don't panick, their are a fair few of us on here that have dd's/ds's with hypotonia.

My son has GDD and hypotonia, he is 3 years old and has started walking very recently although he does have to wear special boots, splints and a helmet, he still manages to get around bumps, bruises and all!!!!

Every one is different and hopefully your pead will give you the correct advise on what to do next including physio etc....

There will be others along later more than likely who can maybe offer you advise.

take care.

Butty.xxx

tks butty

Hello mommie, my dd was dx with this when she was 18 months old, there is an excellent site to look at that answered many questions for me, i will go off and find it for you.
It is sometimes also known as Global develop delay as Butty has said, my dd also has to wear peidro boots and has only just started walking this week, she,s 2 next month.
HTH

Hi jenk,

glad little one is walking!!!!!

i aint been around a lot recently, so will try and catch up with you soon.

Just got dylans major buggy!!!!! oh what fun!!!!!

Mommie,

Just seen your other post, have you been referred to any other specialists????

Butty.xxx

\link{http://www.lightlink.com/vulcan/benign\here}

hope you are ok butty, i will email you later, DD can take 2-3 steps before she collapses, she looks so cute!
She,s very very wobbly still though.

thanks jenk1...i did find that site in my search but thought it was a bit alarming (sorry!) because it mentions cognitive delay etc and speech delays, and learning delays generally, while other sites say that it can be just a muscular problem with no other problems and in puberty they grow out of it.

i am using a different email address at the mo, so will find you in my address book and email it to you!!!

Dylan is now walking 15 steps and refuses to crawl!!!! His helmet is helping the bumps situation and they have since put a splint on his left leg, so he looks a little funny when he walks, kinda marching!!

Butty.xxx

butty - i have been told to wait until dd is 22 months old before she has another assessment. she has seen one paediatrician twice and is under general surveillance of local hospital which is a very good one. I could go private, and see someone else, but not sure what that would achieve right now. any views welcome.

mommie- dont wait, i made a right fuss over it and asked to be seen by someone else, it is important with this condition that your dd gets the support sooner rather than later, she will need the boots and physio, DD,s physio told me that we should be glad we made a fuss as in a lot of cases children dont get seen until they are over 2 and the sooner the better, yes it is alarming reading about speech delay but my dd is talking now.
My email is jenunderscorekellyathotmaildotcom if you want to talk further as i know how frightening this can be, this is how i found out most of my information by talking to Butty as she has been through the same thing with her DS.

Mommie, do you feel happy with the rest of her development, ie, Babbling, co-ordination etc...

Does she say any words at all??

As i mentioned before, all children are different, my ds has hypotonia and severe GDD, he is pretty much reliant on me and others. he does not speak and he attends a special needs school in the nursery department, but like i say they all differ.

if you are not prepared to wait that long then dont as the process can be pretty tough and longwinded like many others will tell you on here, also, she is your child and as a mother, you will have far more knowledge about her capabillities.

Butty.xxx

butty - she has about 10/12 recognisable words and all the animal sounds. sometimes her pronunciation is a bit off, (but i blame the polish girl in the nursery!) When she was given a thorough check at 13 months, no other delay was noted in her development. she spoon feeds, holds a beaker and has just begun crawling and pulling up. she doesn't climb stairs or anything tho and sometimes i think she is a bit slow at recognising things in books - but i know nothing about these things really.

Mommie,

I would deffo ask to get her seen by a specialist sooner rather than later regarding your peads concerns, as jenk says, the sooner the better.

And she sounds like a little trooper and all their with speech etc... although dont take my word for gospel, i aint no doctor, just have a lot of experience in dealing with them!!!

Butty.xxx

So relieved I found this thread. It's the exact question I wanted to ask. My ds4 is 8 months not sitting or making sounds, just diagnosed with hypotonia. Scared myself looking at internet. Given exercises by physio. Got a bumbo off ebay EXCELLENT for him he can now sit up straight hope it will help improve his tone. Want to know cause, nothing else diagnosed as yet. Problems during last week of pregnancy but they wouldn't deliver him! Wonder if it's CP but will have to wait I guess

tallmummy - just to say that my dd did not sit at 8 months - but she did at nine! if i had known that, it would have saved me a month of worry. one website says hypotonia is basically a dx of "don't know" and i have decided not to categorise my daughter until i am absolutely sure there is a genuine problem. i think 8 months is too early to dx hypotonia to be honest.

This is an extract from a letter from Professor Brian Neville, Professor of Paediatric Neurology, Great Ormond Street Hospital, London re congential hypotonia:

A number of children will end up normal. Congenital hypotonia is therefore meant in one of two ways:

either as a definitive diagnosis suggesting no serious problem,

or as a sort of rag-bag diagnosis for the first one-two years of life for this very wide range of disorders.

Most of these children will require paediatric neurology assessment and a number will not be diagnosable early on and a follow up to at least two years of age will be required to clarify the diagnosis and prognosis. in a sense, therefore, this group comes within a grouping of babies and young children with an uncertain diagnosis.

Thought I'd give this thread a little bump. Ds now 91/2 months was diagnosed with hypotonia and developmental delay last month.

I'm finding it hard. He is ds4 and I keep remembering what the others were doing at this stage. He is still like a 5 month old. He can't sit, rolls on floor, can just about lift head for a few seconds.
What are other peoples experiences of developmental delay? His seem quite global, speech, fine and gross motor skills, still needs all food pureed.

Sees physio once a month and due big review at cdc in May.
Socially he is great. Lovely eye contact and smiley.
I'm scared really and a bit lost. Want to know if he'll improve.

Tallmummy,

i know how you feel, we only found out at 14 months old that dylan had delay and hypotonia, although i had been pushing for months.

Like i have said previously in the thread every child differs.

Dylan, now 3 years and 3 months can walk up to 15 steps, he has splints on both legs, piedro boots and a special helmet due to his very poor balence.

he can not speak, except for yes and no, although he is making new sounds all the time of which i am very hopeful that he will get their eventually, but i just don't know. He is however very good with his eye contact and letting us know his needs etc...

he is still in nappies and no where near toilet training and he also attends an SN school in the nursery department with a statement of SEN.

But all said and done, he is happy and always smiling and has definately improved since his DX.

He is doing things now that i was told not to expect of him.

But please, like i say, every child is different and will get their in their own time to the best of their capability.

I am so lucky to have my son, and yes it can be hard, but he such a delight and i wouldn't change him for the world.

Butty.xxx

Tallmummy,

i know how you feel, we only found out at 14 months old that dylan had delay and hypotonia, although i had been pushing for months.

Like i have said previously in the thread every child differs.

Dylan, now 3 years and 3 months can walk up to 15 steps, he has splints on both legs, piedro boots and a special helmet due to his very poor balence.

he can not speak, except for yes and no, although he is making new sounds all the time of which i am very hopeful that he will get their eventually, but i just don't know. He is however very good with his eye contact and letting us know his needs etc...

he is still in nappies and no where near toilet training and he also attends an SN school in the nursery department with a statement of SEN.

But all said and done, he is happy and always smiling and has definately improved since his DX.

He is doing things now that i was told not to expect of him.

But please, like i say, every child is different and will get their in their own time to the best of their capability.

I am so lucky to have my son, and yes it can be hard, but he such a delight and i wouldn't change him for the world.

Butty.xxx

Thanks Butty - it's so reassuring to hear from others in the same situation. I'd never heard of hypotonia before now.
You're right when you say we are so lucky to have them. He is such a gorgeous little boy and we have seen an improvement already - got to stop he's crying!!

Hi tallmummy

Your ds4's diagnosis is very recent, so I'm not surprised you are feeling lost and scared. Finding out your child has Special Needs is very frightening and unsettling and it is going to take time for you to come to terms with.

I have no doubt that your ds4 will improve. But what probably no-one can predict at the moment is how much and at what rate. I remember when my dd was diagnosed (she has a rare condition which results in GDD, hypotonia and epilepsy)I was almost obsessed with wondering how 'normal' she was going to be and I suspect that is kind of what you are feeling.

I can say that over time, as I have come to accept my dd and her disabilities, I don't worry about that any more. I've stopped comparing her to other children. She just is who she is. Now I concentrate on the day-to-day. Like Butty's ds, she is doing things now I never knew would be possible (she is 3.5). My aim has always been just to work with her as much as possible so that she reaches her potential, whatever that is.

I promise it does get easier.

tallmummy -i don't think my dd was so different from yr ds at that age, but she is coming on a storm,and the consultant said her prognosis was excellent. i know hypotonia comes in lots of types and ranges and all children are different, but you may be astonished at how much progress is made in the next few months. i know i was.

My dd had mild hypotonia, she walked late, and at 3.4 is still a little unsteady on uneven surfaces, does not ahve confidence on hills, can run by walking VERY fast , is learning to jump, but cna balance on one leg which most kids her age struggle with bizarrely - dd also has really bad eyesight which also affects these other balance and safety issues.
Physio is ace for sorting, we also have piedro boots, which are beautiful orthotic fitted leather boots in funky colours and styles!
Trampolining and swimming are both excellent for improving hypotonia and dd does both a lot.
Am happy to discuss at length if you need more info xx

Hi All
can't add much in the way of medical facts but my son follows all the traits below,no walking til 3, has the boots etc not very verbal, gdd etc.
the point of the message is go with it and enjoy them for who they are and what they CAN do.
he had an accident yesterday, and when i took him to be glued back together at A&E he was the highlight of the staffs day with his giggles and smile and was so brave it makes me proud the have a 'special' kid.