Benign congenital hypotonia

[anna001]

Hi, am new to mumsnet and have a 3 yr old with above condition. Was wondering if anyone else has come accross this - hypotonia (or floppy baby syndrome as I have also heard it called) is a symptom usually resulting from cerebral palsy or muscular dystrophy. Fortunately, in the case of my son these 2 causes have been eliminated. We do not know why he has this condition, but have been told he always will have. Anyone else come accross this?

hiya
my friend has a 2yo dd who is going through this at the moment. I will speak to her later and get her to come on here and speak to you if that's alright.

my dd2 is hypotonic. she is 3.5yrs now. quite a few people on the special needs board may be able to help.

Hi Anna001,

My son is 3yrs.4months.

He has hypotonia and moderate to severe global development delay with severe learning disabilities.

We have had all tests under the sun and still do not know why he has it and also what has caused it.

We have an appointment with the genetisists next friday for the final illimination of possibilities as nothing more can be done or tested other than possible genetic conditions.

Does your ds walk etc...

Do you get any support at home or input from physio's, OT's or HV???

Anyway, there a fair few of us on here with children with hypotonia amongst other things and we are all here if you need to ask anything, or really have a vent about anything.

Butty.xxx

Hi anna. My ds 4 now 10 months was dx with hypotonia and gdd at 8 months.
Sees physio once a month. Has a corner chair and table to sit in to play.
He's able to roll now and prop up on his elbows a bit.
It's a frustrating condition - we've yet to get a full dx of what might be causing it.
Some v.supportive threads on mn and a good website
here\link{freespace.virgin.net/bch.hypotonia}

My links never work. I'll try again!

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Hi everyone. Thanks for the responses - my ds does now walk so seems to have it to a much lesser degree, he was approaching 3 when he took his first steps (now 3.5). Hasn't reached any more physical milestones though, steps, running, jumping seem a distant possibility. I have been fighting with NHS for some help - he's had 6 physio sessions in past 2 years. We actually went private to help him learn to walk - really did help but couldn't afford to keep it up. (£100 per hour). Don't think he has any difficulties other than physical - not that are apparent to date.Feel like my local NHS aren't interested - have had little info, less help and its not through lack of pestering.

Hi my daughter is now two and has hypotonia as yet we have no other diagnosis, benign congenital hypotonia has been mentioned but we are currently seeing a neurologist. We have been very lucky as she has had physio since she was 9 mths, have just had an appointment with podiatry clinic and are waiting for insoles. I do think it would be easier if someone would come up with a name to explain why she is so floppy and bendy, its just going to be a long time and if they cant find anything else then they will probably label her with Benign congenital hypotonia. Some people do say that as the children grow up they get less bendy, but as yet I'm still waitng for that to happen. Keep in touch and let me know how you get on, keep pestering your NHS for some physio and occupational therapy!!!
From Absmum

Hi absmum! It is all very frustrating. Is your daughter able to put weight on her legs yet? cruise? We have had a major breakthrough last week and my son managed to step up the small kerb outside our house by himself - so thrilling.

Hi absmum. We're in same boat with ds4 aged 10 months. No proper dx just bch and gdd. Making slow progress. Can grasp and play on tummy now. Still a long way from sitting alone. Has physio once a month and review at cdc in June. Frustrating isn't it. Just want to know what the future holds.

Hi Anna, yes she has been walking since 19mths first it was only on flat surfaces then she progressed to walking outside but wouldn't let go of your hand. Now she is 25mths she is more confident and can walk fast even over grass she does fall over quite alot though. Going up and down steps took alot of practise she can now walk up two steps without holding on to anything which is great. The first time she went up the front step to our house we got really excited, sad isn't it what most people take for granted we find amazing. We are now working on jumping, hopping, running which I think is a long way off. Along with being really bendy and flexible she walks a bit like a penguin with a waddle especially when walking fast. Does this sound familiar? One other thing Abbie never crawled she bum shuffled from age one, the hospital said this was her way of getting around because crawling was too hard fo her, her muscle strength used to be quite poor now its fine its just that shes my floppy baby! Did your son crawl? Sorry for rambling on! Speak soon.

Absmum and anna. How old were your two when they started to sit alone?

Hi Tallmummy, my daughter would sit with support at 8 mths with cushions surrounding her but she would flop forward and fold herself in half. At 9mths we were referred to physio for her floppiness and the fact that when placed on her tummy she couldnt lift her face off the floor, her arms would not hold her up. The physio was great the first thing she did was tell me to move the cushions from behind her and said the only thing she needed was a towel folded in two to make the floor softer for her to land on. At first i was gobsmacked here i was being told to let my baby fall backwards, sideways and to the front without stopping her. The theory is that after a few times their automatic reflex action kicks in and they learn to stop themselves falling. It was really scary to do and my husband refused to just use a towel and put a duvet on the floor for padding. After about a week you could see an improvement and by the next physio appointment she was sitting up alone, obviously there was the odd moment where she would fall but she was sitting unsupported at 9 1/2 months. If we hadn't had physio i think it would have been alot later. She took ages to roll from front to back, back to front this was about 8mths and as i said before she never crawled she hated being on her tummy, she eventually bum shuffled at one. When we used to put her on her tummy at this stage she would open her legs, do the splits and push herself back with her hands and roll through the hips to a sitting position. It would make your eyes water!! Floppy babies do eventually get there in the end it just takes them alot longer to achieve their milestones. It can be so frustrating and I have spent many a time sitting crying asking why me, why my baby?! My daughter is always making progress even if it is very slow, I think thats what you have to focus on otherwise it drives you mad!! If I can be of anymore help just shout! One person once told me that in the future it will be irrelevant when your child sat, walked etc, they said when they go for job interview what age they walked at is not important! Its very true as they get older it will all just be in the past and hopefully I will wonder what on earth was i so stressed about.

My ds does the same. He can sit with support behind but falls forward. He can now lie on his tummy and support himself with straight arms. My physio hadn't mentioned the idea of letting him fall to build up the reflex. I think I might try it with him tommorrow.

Hi there to you both. My son did not sit without flopping until around 14 months, although he was still quite unsteady. I had no advice at the time so would just always put cushions around him to protect him (natural parent reaction surely!). Walking started at 28 months but wasn't really at all steady until just before his 3rd birthday. Now 3yrs 4 months and we're working on steps / running. He really doesn't seem to understand jumping at all. He does however go to a pre-school for 2 mornings a week and seems oblivious to the difference between him and his peers. As far as I know they also are unaware - a bit young I suppose. He does not at all understand potty training - he has always had trouble with his poos (infrequent and difficult) and is constantly taking lactulose. Nobody can tell me whether or not this has anything to do with his hypotonia?? He seems to have difficulty with all things phsical - cannot hardly undress himself, dressing would be impossible. He's just so awkward with anything that needs physical coordination. However, he is very content, does not seem to get frustrated (unlike me). You just hope it all comes together before they get to such an age as it can really affect their relationship with other kids. I just have those memories of the "gawky" kids and the fact that they were at the receiving end of childish taunts. I'm sure we all have the same worries. Great to be in touch - I'm going off to centerparcs with the extended family for a week so won't be around. I'll get back on mumsnet when I get back. xxxx

Hope you enjoyed centreparcs anna001. My ds also has probs poohing. I thought it was because it is difficult to get him to drink much but even when his poohs are soft he relly struggles. I wondered if it was the hypotonia - I'll ask at the cdc next month.

Hi, I'm new to Mumsnet, just joined. My son's paed has just discharged him to community care where he has suggested physio (already started), speech and lang therapy and a dietitian. We've been told that his drooling, feeding difficulties, constipation and low muscle tone are all related and I wondered if any other mum has been through what was last week the most painful hour's consultation I have ever had to endure. The paed spoke of possible special education if things don't improve and now he is sending ds for "tests"??????
I am off work today as I am literally worrying myself sick over this. How can the paed be so negative, does he know something and he's not letting on?

Oh Worriedmyselfsick! Poor you.... you sound exactly like me, and it sounds like we have been through exactly the same horrific experiences too (where do they get these "specialists" from that devastate parents so readily?).

My DS2 is 10 months, and he wasn't reaching milestones so back in July we pushed our HV for a referral to the CDT, and he only had his appts at the end of September. After two half day sessions with a ped, PT, OT, SALT, social worker, he was dxed with severe developmental delays, at the level of a 3 to 5 month old, and we were told that he would need care for the rest of his life.

We knew he had problems, but not this bad!

He has been referred back his neuro (who is fabulous and much more positive) and last week spent two days in hospital where they ran all sorts of blood and urine tests, he saw an ENT for his non-babbling and lack of response to noises, and he also had an EEG. So far no results have come back yet other than abnormal thryoid hormone, which he's been medicated for.

We were told he may not ever get a dx, which is so frustrating as there has been nothing in my pregnancy, his birth or life events to indicate there should be a problem.

We are seeing a private physio, who has got him sitting, but he is still very weak in his arms.

The physio from the CDT is coming this afternoon to talk about the feedback, which I am dreading...

There are a few of us on the Special Needs board who are dealing with this (and worse...) together.

All the best, if you'd like to talk, please CAT me,

Hi mm22bys, sounds like you've had a similar experience. The bottom fell out of my world last Thursday. The thing is, ds is 16 months old (14 months corrected) and was never a 'floppy' baby, he just seems to have been late in doing everything. His twin brother is doing ecerything like a full-termer though so the gap seems to be widening. I think it's because of the other things, like feeding difficulties (he still doesn't like big lumps), drooling, constipation that the paed is putting 2 and 2 together.
I could have coped with "Well, you're obviously concerned parents so let's do some investigations" or something along those lines, but it was "Well, this is not nothing and it's not going to go away, prepare yourselves for hard times ahead" !!!!!! I've felt sick ever since.
How are you coping with this, because I feel like I can never get back to normal, I just don't know how I'm going to go back to work yet, I'm supposed to be going in tomorrow.
Hope things went well with the physio and it was more positive than you thought.

Hi Worriedmyselfsick, I do know how you are feeling, and I wouldn't wish it on my worst enemy....

We have been lucky in that we had had contact with a neurologist who has been very accessible, and he agreed to see DS2 within 2 days of us contacting him. He then agreed to admit DS2 to hospital for tests the following Monday / Tuesday. We are playing the waiting game, and it's so hard. The bottom has fallen out of my world too, I just look at the world so differently now, and so wish I just had the "normal" worries (which are worrying enough I know). I have a DS1 who is 3, who is a handful, but "normal", and I feel bad for all this means for him too.

On a positive note, the physio appt went well. I don't understand all she told me (she thinks his arm stiffness is due to faulty messages from the brain...), but she was much more positive, and acknowledged that when we had the feedback with her and the ped that we got too bogged down on talk about tests and the negatives, and didn't talk about his potential. She is 99% sure that because he is sitting he will walk... I did get upset but I do understand now more about their comments.

If you want to take this off-line, please CAT me.

All the best, and huge hugs. When we walked out of our assessment, DH and I told each other we would prove the drs wrong, and I know that you and DS will prove them all wrong too...

HI worriedmyselfsick I have ds2, 5yr old who has always been very delayed & we have heard some shocking predictions at appointments over the years (ds2 was also prem 28wks).
He does have some long term disabilities but is a very able little boy who has just started at our local primary school.
It is an awful time of uncertainty & worry but he is still your same little boy.
The mumsnet special needs board is full of helpful parents who have been through the same thing & give great advice.

Thanks mm22bys and mtmatemax for your replies.

I can only see the worst at the moment and I'm finding it hard to do 'normal' things.

I went back to work today after having swollen tonsils and earache for the last 4 days, still have it but felt a bit better this morning and was glad to get up and out like 'normal'. When I got to work though (I teach), friends were asking if I was OK and if the appt on Thurs went well and I just broke down! I couldn't believe it! I'm usually the strong one at home but I feel like I'm going mad. I can't be in school, with hundreds of 'normal' children and I can't be at home either, because I don't know what to do with myself.

When do you pick yourself up and do 'normal' things, like food shopping or walking in the park??

Your comments have been so encouraging though and my ds has a CDT (??) assessment meeting on Thurs 25th Oct, I don't know whether we're supposed to attend or not. I suppose we'll know a bit more about things then.

It's the waiting that's cruel isn't it? Our physio has been very good and has rushed this assessment through for us, but it's still 2 weeks after the consult with the paed.

MM22bys, glad the physio appt went well and that you got some explanations. Mymatemax, you're absolutely right, ds is the same as he was before last Thursday, we love him to bits and we are so determined to prove everyone wrong!

HI Worried
I can really understand how you are feeling, the waiting for appnts, the assessments the results it is hard.
Don't be too hard on yourself though, you are entitled to be worried, to cry, to be upset.
When my ds2 was finally dx'd with CP i went through an awful time, tried to struggle on at work,at home etc keeping a brave face but I almost cracked up. In hindsight i should of took some time off & got help with sleeping but i didn't realise how tough I was finding it all until after iykwim.

Give yourself some time, don't struggle on if you need to take time off of work take it & if you ever need someone to talk to just shout.
Max x

Thanks again Mymatemax, you don't realise what it means to talk to someone who understands. I haven't told any of my friends yet and family just keep saying "Oh, he just needs more time!", so in answer to that you feel like you have to convince people there's something seriously wrong.

Everything crossed for CDT assessment Thurs.

All the best
Worried x

Hi, Do any of you have any recommendations for speech therapists in London that are good with problems due to hypotonia - my little boy is 19 months and I think we need to now go see a speech therapist. The physio sessions have been amazing, and he is improving rapidly, finally pulling himself up this week though pretty far from walking still.

Thanks very much for any recommendations!