Please Help - Hypotonia and Mixed Muscle Tone in 4 month Old

[WavesTheWhiteFlag]

Is there anyone else here whos lo suffers from this? My DS has had blood tests, MRI and chromosome test but no dx.

He is currently having physio and is getting better at lifting his head when on his tummy, but worse at it when sitting. He curls when sitting (aided of course) and is starting to lock his body into a C shape facing right.

We've been told that he will need to see a SALT when hes ready for weaning.

I'd love to hear from anyone whos gone through this, and how long it took to get a dx, if at all.

Hiya
My dd has hypotonia in her trunk and mixed muscle tone in her limbs. She had an mri at 2 weeks old which showed basal ganglia damage. She has never been dx with anything e.g. CP though as her symptoms are lessening as she's getting older thank goodness (she's 28 months now).

My dd curled when sitting at 6 months but was pretty much upright by 9 months.

What have you been told by the paeds etc? DX is often a 'wait and see' scenario at that stage I would think..

Paeds bascially said they thought he was gonna be a 'medical mystery'!!! Very helpful. He was born with a club foot and hair tuft so originally thought it was spina bifida, but ultra sound and mri were negative. Chances are he will have another mri around 2yrs but simply a case of wait and see.

Ive read lots of post but mostly about much older lo's. Just curious so hear other peoples experiences.

Did you apply for DLA with your dd? We're about to but not sure how to do it for a baby??

I can't help regarding the hypotonia, but for DLA, think of all that you have to do for your DS, from fresh eyes.

Physio - what do you do, how often, how long for.

Positioning - do you have to do anything special, do you need to make sure he is in a safe position?

Weaning - will you have to take special precautions?

Bathing - does he need even more support than a regular 4 month old.

you won't be3 able to apply for dla until 6 mos. your paed will tell you if it is appropriate.

dd2 was initially very low tone, then went extremely high tone (around 5 or 6 months maybe?) and is now mostly low tone(6 yo now). she's had physio and slt from birth. we were advised at 6 mos that we should claim dla as her problems were not likely to resolve.

dd2 has cp (originally dx spastic quad, at 4 was re-dx athetoid)

ime paeds will often adopt 'wait and see' often for years, as some tone issues do resolve over time - but i would say that by 6mo i knew dd2 would get a cp dx eventually.

i assume you need a slt due to poor oromotor? dd2 was tube fed inititally, but our slt (from birth) was truly truly fantastic. i credit her totally with dd2 now being a completely oral feeder, albeit with a couple of particularities wrt texture.

dd2 was technically 'developmental delay' until 23 months, but all therapists freely admit she was always a cp baby and clinically presented (and given treatment) as such.

dd2 had a repeat mri at 4 (hence re-dx in line with clinical presentation lol) which clearly showed the damage.

madwoman it's actually 3 months. Rules state that the care needs must have been present for 3 months, and likely to persist for another 6 months or more. I don't think paeds always do say if it is appropriate. We applied, were successful, then a few months later the paed said "do you get DLA? You should be getting the high rate". Fortunately, thanks to MN, we already were.

It was our physio who told us about DLA, and you can apply anytime, but will only get the money after they are 3 mths. The cons pead basically said we would be daft not to apply, after all, you only get it if you go for it.

Thanks lou, I hadnt even thought about bathing. I guess he is different to a 'normal' child in that he is extra floppy in the water. We use a bath support, but what age would you normally stop using one?
He has a special corner chair to help him sit straight, is that the kind of thing to mention? Any other tips would be great, its such a daunting form to fill in.

I had intended on giving BLW a go this time round, but am concerned that he wont be able to manage, what are peoples experiences of weaning with low tone? So far he is ok with his bf, sucking seems fine, although he gets very tired doing so.

dd2 was much later weaning to lumps - effectively she existed on thick purees for over a year and then went straight to 'bite/dissolve'. you really need some advice from a decent slt to be honest - i wouldn't have gone anywhere near blw tbh - but then she didn't have any functional grasp and wasn't able to get her hands to her mouth so it wasn't really an option! even after a year i often sat with her holding a biscuit for her to suck lol

has the 3/6 month dla thing changed? just curious - have trouble remembering these things lol... i thought you could only apply earlier if the special rules applied? (quite happy to believe you - not an expert!)

yes - all those things nec to write down. tbh the 'high rate' tends only to be applied for overnight issues - and they have to be ones that do not apply to other newborns. ie 'feeding 2 x night' not really applicable, but 'feeding 5 x night as unable to effectively feed in day due to difficulties with muscle tone' does count...

think most bath supports (the lay back ones) are suitable until six mos? and then the 'upright' ones, so some use them for some time - you need to keep egging exactly why you are using eqpt etc. dla apps are extremely repetitive... saying something once in answer to a question doesn't mean they take it into account for the next question - you have to say it all again. it's v depressing.