Floppy Baby syndrome

[max74]

Does anyone have experience of this and how your baby developed. My 4 month old girl is v floppy and isn't reaching her milestones -not holding her head, hardly smiling, a bit unattentive to toys and noise etc.
Do you know of any groups for support?

no expierence myself as dd has cp. sure someone will come along who will be a ble to advise.

Have you spoken to your Health Visitor? Ds2 has Downs so I know how you are feeling but can't really be of any practial help. Sorry.

Hi, your DD sounds like my DS2, who is now one. He is globally developmentally delayed, no known cause (but currently being investigated). At a similar age to your DD, he was similar, not holding head up, not really smiling, and very in attentive to toys.

He has Delayed Visual Maturation, and he was hearing impaired for a while (miraculously almost entirely "cured" with grommets, yes he had glue ear, and he was very young for the grommet op), and I really strongly believe that now that his vision and hearing have improved he is starting to come on. Still very behind, but he is getting there, with lots of extra stimulation (flashing lights in his eyes, etc), and physio.

We don't know what has caused DS2's problems...but he is coming along.

I hope you are able to get some good advice, support and information. When he was 10 months old (it took almost 3 months for the assessment to come through - what a waste of time!) he had a comprehensive assessment with a physio, OT, SALT, Social worker and pediatrician. Maybe your DD could have something similar.

We have found NHS mixed - great on the testing / assessment side, but almost non-existant on the therapy side.

All the best to you and your DD, it is such a worrying time, I still look back on his assessment in September as the low-point, but we got the report today (yes more than two months later!) and while it is depressing reading, it is already so out of date!

Good luck,

Oh, I don't know of any support groups for hypotonic babies, other than some on yahoogroups (easy to search on...)

Hi

You have just described my 6yr old when he was that age!! I first noticed something was wrongwas well before his 6 week check when he didn't startle to noise!...over the years he has collected a list of diagnoses incl hypotonia, right hemi paretic cp, muscle weakness and joint hypermobility syndrome.

I do belong to a support group, though not for one specific condition,and i have gained alot of help and infomation from them. I'm not sure if I am allowed to post links to other gvroups on here so if you would like info please email me on [email protected]

Hi,

Floppy baby syndrome, or hypotonia, can be a sign of masses of different things. My eldest son is hypotonic - at 15 months he could sit up if put in that position, but apart from that could only lie on his back, although his fine motor skills were OK. After physiotherapy, he learnt to roll over, bottom shuffle, then crawl at about 18-19 months, then finally walk just before he was 22 months old. He is now 3 and 2/3 and doing really well. His intelligence is completely unaffected (in fact, he is exceptionally bright), as are his vision, hearing,co-ordination and speech (although he was late to start talking). They are currently wanting to look into the possibility he has a connective tissue disorder, as he is also very hypermobile, or very rare myopathy (where the muscles are affected, but the condition doesn't get worse over time as it would with muscular dystrophy). Whatever it is that has caused it, he seems in other ways to be a very healthy, happy boy who can run and jump and it's unlikely his life will be much affected by it in the long term.

So, your child being floppy may not be such a serious thing in the long term as it may seem at the moment, although obviously there are serious conditions that can cause it. Hypotonia does tend to delay smiling (low muscle tone in the mouth makes it hard to form a smile), can cause a baby to drool for longer than average, can cause constipation and feeding problems and obviously delays motor milestones, depending on how severe it is and how much of the body is affected. Sometimes it does seem to get better over time, or the child learns ways to get around it and lead a completely normal life (bar ever winning a running race). It doesn't necessarily signify problems with intelligence, sensory processing or sociability. The problem with it is that, since there are so many possible causes, there are multiple tests that may need to be taken to establish a cause, if they ever find one.

Only time can tell whether it will be a big problem in your child's life, or will become an increasingly minor one. In the meantime, I've found one website/posting board very helpful, as mothers from all round the world whose children are hypotonic use it to post information and ask questions. The address is: messageboards.ivillage.com/iv-ppchdhypoton

My DD2 has profound hypotonia as a result of her genetic disorder.

Have you seen a paediatrician? Are they investigating her floppiness? You should be referred for physio, OT, Portage etc to help maximise her abilities.

Otherwise let me know if you have any specific questions and I'll try and help

Thanks all for your help. She is being investigated as it was obvious from day one she wasn't quite right and still no known cause.
OT, SALT, Physio and portage all under way. We are getting a referral to GOSH in case they are any the wiser.
So happy to hear improvements of your litle ones so I am hopeful now bu8t also realistic

Hi Max74,

It's great all the therapies are in place. DS2 was referred back in June / July for his assessment, and we only had our first NHS physio session yesterday. Portage hasn't started yet!

Sounds like we are following a similar path, DS2 is one now and we still don't know what condition he has - we've been to GOS for nerve conduction studies and following a referral across to Hammersmith for investigations into neuro-muscular disorders (which luckily he doesn't have!) we still don't feel like we are any closer. The dr at HH wants DS2 to have some quite invasive procedures including a muscle biopsy and a spinal tap. He told us some rare conditions can be treated - and we don't want to leave anything out that might help DS2, we are not in a hurry though - he also has to have an op for retractile testes in the New Year.

I counted up over the weekend how many days DS2 has seen drs / therapists since his assessment in September - there have been 12 weeks, and out of those 60 days he's had an appointment on 42 of those days!

We saw a ped in Oz in May, and he found a few issues with DS2 then - he told me that DS2 would be a busy boy, how prophetic!

All the best and good luck at GOS,

My son was delivered 9 weeks early as he was not moving on the scans we had, he was a very floppy baby and only cried once the whole 8 weeks he was in NICU after investigation he was diagnosed with a genetic condition called Prader Willi Syndrome. He is now 8 months old and still very hypotonic but is improving with physio, swimming and yoga. Its hard work and will be but it was a relief to get a diagnosis so at least we can find out about the condition and be as prepared as possible for the future. hope your get some help/diagnosis soon. take care