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Hello And can anyone help.

(13 Posts)
mummyslittleboy Fri 08-May-09 16:35:28

Hello

To everyone I have just found mumsnet I have 3 children, but have had a few concerns over my little boy and was wondering if anyone could help me.

He is 27 months and didn't walk until he was 19 months then it became apparent that he was walking on the inside of his feet and his left foot is the worse.
I took him to the Drs and they referred him to a paedtrician, they told me he would need boots and physio but didn't tell me what was wrong just said it is nothing to worry about.
When we went to see the physio I was told that he didn't need referring for boots as they are very expensive unless I had private IInsurance for him then they would. I wastold to buy him a pair of kickers boots as they would give him the most suppport.
The Physio did show me a letter from the Paeditrician saying he has hypotonia, From what I have read so far about the condition he doesn't have it very bad he has low muscle tone in his legs and feet when I asked what that meant for his future I was told he will be fine he is not that bad but he does need to be seen by a speech therapist, have a hearing test and see a developmental paeditrican, as well as physio once a month and exercises for me to do at home for half an hour at least each day when I asked why he needed to see the developmental paed I was told it is normal?
My little boy doesn't talk but he does try to,He can be very nasty sometimes by hitting and throws things around the house, he eats well but does prefer to eat mashed up meals and if he is given things like nuggets or chips he will leave most of it, he does sleep a lot he still naps in the day sometimes for 3 hours,
Does anybody elses have children that do similar sorry to ramble on just wish that i had been given more information by the dr.

Sam

bubblagirl Fri 08-May-09 16:41:28

hi and welcome to mumsnet my ds has ASD so im unable to help im afraid

but he didnt speak until 3.6 properly although atypical speech sounds

but at 2.5 was when he was using single words i was just told to repeat everything i was doing at all times to help him understand the actions to the words

but did find when not talking he was very frustrated and temper and tantrums were often
there are pec cards that have pics of everything from every day life and these can be used so he can point at what he wants it lessons the frustration for you both SALT may recommend this

hoping someone else will come along and be able to help more

cory Fri 08-May-09 17:23:41

Hi and welcome. Hypotonia can appear with a range of different conditions. What you want is a proper diagnosis, not fluffy promises that all will be well.

His eating problems could well be caused by hypotonia, making it hard to work his jaws. I would have thought this could also affect his speech, but they will want to check him up, as hypotonia can also sometimes be associated with developmental delay and learning disabilities.

Both temper and exhaustion could be caused by the hypotonia: if it is exhausting just to keep his body together, he is going to feel exhausted and bad tempered, poor little soul.

My dcs both have a condition known as hypermobility syndrome. It's a connective tissue disorder. They have no learning difficulties, but have problems walking and using their joints.

Dd is now 12. She alternates between walking and using a wheelchair depending on whether she is having a good day or not. She can write, but needs to use a laptop for long projects or exams. Physio has done her a lot of good, but she also needs to pace herself so as not to overdo it. She had problems breastfeeding as a baby because of the hypotonia but was ok with solids. Looking at her last 5 years, it seems likely that she will always have a certain degree of disability and pain. But she is doing well at school and hoping to go to university eventually, so I think she'll still have a good life.

Ds is 8. He finds it difficult to write, and sometimes has pains walking, but is still active and able to do soccer club. He wears insoles and piedro boots, courtesy of the tax payers. We have no idea what his future holds. He could stay the same, get better or end up like dd in a wheelchair.

Some children with the condition grow completely out of all symptoms.

But this is only one condition; there are many. In fact, I am fairly certain that there are mumsnetters whose children have a combination of hypotonia and developmental delay, so someone may be around shortly to fill you in on that.

One thing I have learnt that I can tell you though: you will have to keep pushing for a diagnosis. And there will be doctors along the way who suggest that you are just being precious and over-worried. Go with your own feelings and your knowledge of your child.

Phoenix4725 Fri 08-May-09 17:31:54

hi my ds is 3.9 has hypertonia and general delay he to wears piedro boots paid for by the nhs, he was bit later walking was 2.6 before he walked

they sound like there checking eveything out but you might need to push for the appointments and its not unnormal tosee devlopmental paed for them just to check if hes making his milestones

ds also nonverbal as well but we have found using makton has helped ease of some of the frustrations

mummyslittleboy Fri 08-May-09 22:11:50

Thanks everyone for your messages I felt so alone before I posted here it is good to know that there are others with children with Hypotonia had never even heard of it before yesterday. I will push for the appointments and make sure he gets the help he needs. thanks again

bubblagirl Sat 09-May-09 08:45:08

well i have to say i too felt alone before joining mn dont be afraid to come on and rant if you need to or simply share anything were all supportive and its been my lifeline on here xx

Macforme Sat 09-May-09 12:26:51

Hi and welcome...
You son sounds a classic floppy bunny
Hypotonia affects lots of different areas for a child.. from speech to walking to eating, and it can be mild, moderate or severe..but that depends on the cause.
The majority of hypotonic children grow up into 'not athletic but not visibly special needs' children. However many will needs various types of help and assistance from professionals over the years. Hypotonia can be a 'stand alone' problem or a symptom of many many syndromes and conditions!

I think it's very poor that you have been told to buy Kickers when what he needs are Piedro boots.. he has been referred because it was already identified he needs them. The physios attitude is very typical I'm afraid 'let's save money'.. go back and say they kickers are NOT enough!

If it helps to read about another hypotonic child, my son's web site is here

http://charliesmomuk.weebly.com/index.html

Charlie still has many issues but has come a long way...

mummyslittleboy Sun 10-May-09 19:14:22

Hi Macforme,

Have had a good look at your website it has been a great help thanks for that, I would say my son has mild hypotonia from what I have read on here and on your web site.
The HV has never expressed any concern and my son has always met his milestone or be it only just but he has met them, I as his mother would be very suprised if they say he has any learning problem, but guess only time will tell. I have decided to make an appointment with my own GP again and tell him what the physio said and see if he can help at all maybe try and get another physio to see him whilst I understand he might not be as bad as other children I do feel her diagnosis was purely for financial reasons if the boots would help I would pay for them myself if that what they want. Sorry to rant just feel frustrated.

Sam

mummyslittleboy Thu 02-Jul-09 01:05:54

Hi everyone,

We have had the appointment with the developmental paed, she said little one is only 9 months behind in his motor skills and fine motor skills, she said he is further behind in his speech though,but we are still waiting for appointment for speech and language,She has now referred him to a developmental pre school, an OT and hearing test and said she would send me a copy of her report on him does anyone know how long this could take? The developmental paed asked lots of questions and it turns out that she says I have hypermobilty but not sure how to get a proper diagnosise on this my Dr is quite funny and when I asked for a speach referrel for my son they said no so am worried that he wont listen to me, all my life I have lived with pain in my hips and knees and my back, I used to pull the muscles in my legs so easily and would be in agony for months, When I was 11 I broke my wrist i only fell over and it broke but I walked around for 3 weeks with it like it as it was just a bit more pain than what I usually had. My husband has always said I was weird as used to be able to bend all ways as I have got older though my joints ache to much to be able to bend so much, I also suffer with severe cramps in my legs the pain wakes me up at night and i end up having to massage my legs for about 20 mins before it subsides. could this be something to do with the hypermobility? My parents always told me to stop being stupid there is nothing wrong with me when I used to complain to them so just got on with my life and learnt to live with it but it would be so nice to not be in constant pain and tired all time.Sorry it so long just so confused.

Sam

ChopsTheDuck Thu 02-Jul-09 07:47:42

The hypermobility website might give you some answers for your own problems. In my experience HMS tends to cause pain in the joints rather than muscular. It could explain the pain in your knees and hips.

One way you can sometimes tell a hypermobile joint is that it will move completely the wrong way to a degree. For example, ds's knees bend in the normal direction too far but also swing slightly to the left and right due to the laxity of the connective tissue.

I agree that your son needs more help and support. Unfortunately it usually is the case of having to fight for everything. In my experience GP's aren't so good with special needs, and you may find you get better support from the paed. I'd tell the paed what happened with the physio and get him referred back for the piedros again. I'm also having trouble getting them - was told they wouldn't help with hypermobility. I wonder if the NHS is cost cutting in that area!

Reports seem to take about 2-3 weeks generally.
I'm glad at least the paed is doing something and I hope you start to get the support you need. smile

mummyslittleboy Tue 18-Aug-09 14:40:28

Hi Everyone

Thanks for all your replys sorry haven't been on for a while little one seems to be having some rather nasty behaviour problems the other day we were sat at the table eating tea and he picked up the fork and stabbed his 9 yr old sister with it I had a couple of bad days as just thought I couldn't cope any more it doesn't help that none of my family see there is a problem with him they keep telling me he is normal and just being naughtyangry
Last week he had tonsilitus but we never new anything was wrong as he was eating and drinking fine but his temperature I couldn't get down it was only when we took him to the drs he said he has tonsilitus yet he didn't seem to be in any pain with it, We know have the appointment through for the OT so was wondering if anyone can tell me what to expect at ths appointment?

Thanks everyone Sam

jasdox Tue 18-Aug-09 15:52:16

Hi mummyslittleboy,

Ouch, ,sorry to hear your having a tough time at the moment.

Never had dealings with OT, but my ds was recommended to see physio, paed, Speech therapist, when I voiced concerns that he was not talking by 2ys. We went to the physio as I commented he was v. clumsy and had lots of accidents. After the physio check, she suggested piedro boots. He loved them, after huge battles of trying to persuade him to walk to nursery not faraway, in the boots he wanted to walk - which was great. It was only when I was getting the boots at the Orthopaedic clinic did she mention he was hypermobile. He was also found to have 8m delay, more so socially.

He also had problems breastfeeding, still prefers soft foods and hates drawing, I think its all connected.

Well a year on, we are out of piedros and just has insoles. Apparently his muscles have strengthened enough to help. Although still a little wobbly at times his come on really well. Developmentally his speech is still behind but not bad, and he seems to have pretty much caught up with this peers. Still hates drawing, but loves the programmes!

As ChopsTheDuck writes - I'd tell the paed what happened with the physio and get him referred back for the piedros again.
And might be worth checking yourself out too.

Good luck

mummyslittleboy Wed 19-Aug-09 08:43:48

Hi jasdox

Thanks for replying, Paed keep changing there appointment due to annual leave we were supposed to go next week now it is October after 4 date changes but when we do eventually get back there I will be mentioing it.

I couldn't get him kickers boots as they were just to expensive I have got him some other boots but he is still very wobbly in them the physio told me that if he was hypermobile he could have them but that paedro's dont help children with low muscle tone.

I did go to the Dr's about myself complete waste of time the Dr gave me a prescription for some pain killers that are ussless and told me there was nothing else they could do.

It is good to hear your little on is doing well with his walking It would be nice to be able to walk the little one to the school to meet his sisters but we still use the pushchair for that as its a lot safer.

My little one prefers mashed foods to but was told by speach that they dont think that has anything to do with his problems just its a lazy way of eating, But if you give him finger foods he gaggs so not sure how she can say its lazy.Hi is 2 and a half and only says mum no other words but lots of tantrums!

Sam

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