First Timer Question re: Hypotonia, Visual Inattention, Failure to Thrive

[sony2883]

Hi, my dd is 5 months, and has been diagnosed with hypotonia, and visual inattention. We first became suspicious when she was 3 mths when she failed to meet some milestones, for example didn't fix and track with her eyes & severe head-lag. Also her weight gain had slowed down (never lost weight - but very small gains that pushed her below the percentiles)

We were refered to a peaditrician, a nuerologist (for an MRI scan), and an opthalmic surgeon at GOSH.

Initial suspect was CP, but they seem to be backtrackking from that as her birth was uneventful and the MRI came back clear. The VEP tests at GOSH indicated that she can see to a moderate level.

Now they are focussing on a metabolic disorder (awaiting results from a lumber puncture) - but I dont think they have much idea of what they are looking for. I've been warned that there may in fact never be a diagnosis.

My ds has no dysmorphic features, she is my third child (the other two - a dd of 13 and ds of 10) were unaffected by any of this. She does not smile but babbles ok. Her head circumferance is ok, and she's now on Infatrini to boost calorific intake

Has anyone else seen these symptoms? I love her to bits but am naturally worried at what this could be.

I know there's probably hundreds of conditions that fit this picture - but any help or guidance would be appreciated.

Thanks

Hi Sony2883

I have no idea what might be your DDs problem; I'm sorry. It must be very frustrating not kowing what's causing your DD's problems. I would suggest that you might want to get in touch with Contact a Family as they offer support if you don't have a dx. There are a number of other organisations that support families with children sho have visual impairments, many of whom also have other SNs; so there is a lot of support out there, even without a dx.

My DS has a visual impairment as well and I'd really recommend getting in touch with a Qualified Teacher of the Visually Impaired (QTVI) - just self-refer through your Local Education Authority as they can help you with stimuating her vision and get you further help with other aspects of her development.

You're probably not in the right head space to hear this (I wasn't) ; but I've just missed out on a huge amount of money I would have been entitled to as I couldn't get my head around claiming DLA and other things when I should have done as soon as I found out that DS had a VI. So you should look into the benefits / tax credits situation sooner rather than later.

Thanks Crimplene - I cant claim DLA without a diagnosis - or could I?

I will also get onto Contact a Family as you suggest.

Thanks

Oh yes you can! You don't need a dx - the whole from is horrible and it's worth getting professional help with it, especially in relation to the VI as lots of parents complain that the form is weighted towards physical disabilities rather than sensory impairments, but it's about your DDs extra care needs over and above those of a child without SN of the same age - not about the labels a child has - although you do have diagnoses for her VI and hypotonia, even if you don't know why.

It can be hard to explain what the extra care is with a young baby, especially when you're still finding out about all the extra things she needs which is where the professional help comes in handy. The DLA can also give you access to other benefits (notably Carer's) and substantially more tax credits.

I was going to recommend you look on the hypotonia web noticeboard, but having just looked on there, I think you've already found it! If that isn't you, I can let you have the web address...

Hi Sony2883,

your DD sounds like my DS2, down to a "T". He is 12 months now, but he wasn't smiling, weight gain slowed at around the same time as your DD, and head circumference was "small". We have no official diagnosis yet. We have been to several London hospitals, for a whole range of tests, but so far no word on even what they are thinking he may have (we think it may be CP, but noone, other than the neurophysiologist, has ruled it in or out). His MRI was clear, as were his EEG, ERG, EMG and VOP. The only dx we have so far is Delayed Visual Maturation, so while for a while we thought he was blind, his vision is improving. With a lot of work, he is sitting now, and is reaching a lot more, and is a lot more interested in his surroundings, but he still weak in the upper body so he is not crawling (his legs want to do it so badly but his arms just won't!).

He is having regular physio and OT now (both private unfortunately) and we have been to BIBIC in Somerset, and in January we are going to the Bobath Centre in north London for some more ideas on exercises etc that may help him. We have found the NHS fantastic on the testing front, but sadly lacking on the therapy side.

I haven't got my head round the idea of claiming DLA etc yet, part of me hopes that he'll end up "OK" and so won't meet the "disability" bit, but maybe I am in denial.

All the best to you and your DD, it is such an awful time,

I should have added too that when he was assessed by the Child Development Team, and BIBIC, they found that his hearing was quite bad as well (profoundly deaf in his left ear, moderately in his right ear). They measured him for an aid for his right ear, and recommended he have grommets. We had that done a month ago, and his hearing now is practically normal in both ears. We hope that with his improving vision, and much better hearing, that as his "inputs" have improved, what he can do will also develop.

Other test I forgot he's had - He also had an ECG, and that too was normal. He too has no dymorphic features, and other than slightly raised TSH (thyroid hormone) his blood and urine tests were normal.

All the best,

Hi All
Were your children ever diagnosed? How are they now? My son is 12 months and has similar signs, he has hypotonia, Delayed Visual Maturation (we think), only now he's started touching/reaching for things. This post was a few yrs back so it would be nice to hear the outcome xx