Treatment for Hypotonia - Advice Needed Please...

[GoodyB]

My ds is 14 mths and has been diagnosed as hypotonic and developmentally delayed (gross/fine motor skills of a 6 mth old). He is now sitting unaided but is still not mobile. The docs continue to look for a diagnosis - he's had an MRI, muscle tests, blood tests and chromosome testing by the geneticists - no luck so far. He has been seeing physios since birth for tortocollis and his floppiness. He is now having physio and hydrotherapy as well as speech and language therapy (he's a pretty poor feeder just to add into the mix!). Does anybody know of any other treatments we could be trying / if they are any good? I've heard there are different types of physiotherapy...conductive treatment or smthg??? Happy to pay privately if necessary. Also we've been referred for portage. Anybody know anything about this / if it's worthwhile? Any advice greatly appreciated...

Hello GoodyB. My daughter is 3 in July and has hypotonia, hyperflexibility, GDD, severe language delay, glue ear, and some feeding issues. We don't have an overall diagnosis for her.

I don't know about the different sorts of physio that you mention. However, I can tell you that portage is a wonderful thingat least in my areawe are incredibly lucky to have such a good department and other parents aren't so fortunate.

A portage worker is a special kind of early years educator who is skilled at working with children with developmental delays. Because they aren't medical staff, the attitude tends to be more about what your child can achieve and less about the things they struggle with. They'll identify the areas where your DS needs a bit of a push and identify some ways you can help him through play: for example, playing with Rice Krispies helped DD's fine motor skills AND encouraged her to eat; magnetic blocks helped her to learn to stack one on top of the other.

Portage workers come to your home but your area might also have a drop-in session for parents on the waiting list, where you might be able to meet other parents if that's what you want. You'll also find your portage worker knows lots about local nurseries and pre-schools because they work with all the local children with SN.

Good luck, let us know how you get on!

hi goodyb

theres a few of us on here my ds be 4 in July he has hypotonai, hypermoblity, GDD, severe launguage delaym mld hes now fuctioning at about 18 months to -2 years

m ds is now up on his feet since he was 2.6 he wears pedro boots and splints but does still tire easily so we have wheelchair for day to day

we dont ahve portage here s but that and you have hydrotherapy ounds great

we dont have reason for either but then again they not looked at it either

have you looked at doing makton course its worked real well for my ds , took 1 months before he signed back and the signs are loosely formed but can now communicate what he needs

good luck with it all

Thanks Arabica - portage definitely sounds like a good idea...and it'll be nice for someone to focus on what he can do for once and not what he can't!!!

Thanks also Phoenix - I am starting a baby signing class later this month - do you know tho' if there is any evidence that signing actually delays speech - just wondered that if children had problems with speech anyway they might find signing easier and not be motivated enough to speak....just thinking aloud...anyway better go...the little fella's just woken up.

signing will not delay speech. i was worried about the same thing. we started makaton at about 18 months and i can honestly say it gave dd2 the impetus to communicate. wiggly fingers meant her signs were like reading scribble lol, but it bump-started the process for her. in our case she is now entirely verbal and age-appropriate vocab after being told she was unlikely to be verbal at all.

portage is just brill, take all you can get. it gives you great ideas about new toys to try as well.

dd2 sat at around the same time as your lo, and eventually did move on lol but had lots of help along the way starting with a standing frame. she's mostly low-toned but has some fluctuations. she wasn't dx until 2, we had 'developmental delay' with muscle tone issues until then. she's had slt from birth.

when was the first mri done? just beign nosy as very early mris can sometimes not show damage, and it is worth redoing later... i think 12 days-ish is usually referred to as the cut-off for reliability?

Great - was just wondering. Isn't it great when you prove them all wrong! First MRI was done in SCBU. It was done just before he was discharged so I'd say prob around 18 days or smthg. It was all fine at that point. Can I ask what the dx was? Not that it would make much of a difference in terms of how he is treated but i suppose I just want some answers as to why he is like he is.

our first mri was at 12 days.

dd2 has cerebral palsy - originally dx with spastic quad (her arms were quite tight as a tiny) but she is now very low toned and has an athetoid cp dx due to some fluctuations and 'athetoidy' bits, although she doesn't have the classic 'writhing' etc - just wiggly toes and a few little facial quirks, poor balance/ ataxia.

she spent 5 weeks in scbu and had no gag/ suck/swallow to start with. was ng fed etc.

she's 5 now and goes to mainstream with a bit of help.

when she was 4 we had her mri redone due to a dispute between the paed and us/ physio/ot as we felt it was a nonsense that the kid with the low tone was carting a spastic quad dx round with her (we move a lot and so new therapists see the label first and then the child lol) it showed a fair bit of obvious damage and the neuro who talked me through it was a bit stunned that dd2 walked in and had a conversation with her lol. dd2's damage is that typically seen in birth hypoxia, although we are led to believe that although there were some 'soft' signs of hypoxia (she was treated as an HIE baby) that the mri at the time was not significant....

they are doing all the right things in terms of therapies anyway, which is good. hope you both enjoy portage

I was told that sometimes achild learning to sign can help with part of the brain that controlls speech.I can not praise signing enough

The main thing is to remember to speak as you sign

have you investigated 'hippotherapy' nothing to do with hippos, it is a special type of physiotherapy done on horseback, with physios who have done extensive extra training to enable them to use the unique movement of the horse to help a variety of problems. It is not learning to ride, although some patients will transfer to a riding class later on, but a specific treatment and the child is very much a patient, not a rider. Patients really love it as it is less boring than some sorts of therapy so are more motivated to comply. It is great for CP, hypotonia, and loads of other things. Much of the research is American. If you are interested, i could find out if there is a physio near you who does it. There are not loads of RDA groups who have specific hippotherapy sessions as many RDA groups will not take riders until they are 5 and don't have physio input.

Thanks. I had heard of this but thought my ds would be too young. If you could find out whether there's a physio nr us that wld be great thanks - we're in Thame, Oxon - even if we don't do it now it is smthg we can bear in mind for when he's a bit older.

If you contact the County Chairman for the oxfordshire area she will be able to tell you if there is a group which does hippotherapy in your area, or which group might be most suitable. There is often a waiting list for groups too. The lady is called Mrs W Luke and the number is 0845 241 6322. You can look on the RDA website for more info www.rda.org.uk/

we did makaton with our boy and it was amazing - really helped with his language development - his first words were all ones that he had signs for. Now his speech is improving, the signs are falling away, but he sometimes includes them for clarity. From our experience, I would definitely go down the signing route if you discover that your child ends up with speech delays or a speech condition.

We have just started our 2year 8 month old doing horse riding therapy and it's amaizng. I think your child would be too young, but it's worth contacting all the centres now as they have long waiting lists. Look on the RDA webiste. I think some do take younger kids in carriages to get the movement, but I'm not sure many do (maybe ask the Diamond Centre in Surrey about that).

We did portage for a while before our boy wen to nursery and it was very good.

Swimming therapy is good. I also got a lot of soft play equipment at home from Wesco (need to google it and order a brochure), which I think is helpful.

Lots of soft play - somewhere like gymboree I find great at encouraging movement in young children. Though you get to the difficult decisions on whether to keep your kid in the class with the younger children at their physical ability or have them around the same age. I used to find that difficult but possibly do a bit of both.

I don't think there is medical research yet supporting the horse riding therapy, but I think it's doing something for our boy, at the very least he's loving it!!

We looked into this primitive reflexes Occupational therapy thing, which I'll maybe go back to, but felt like we were overloading and I don't think that yet has medical research behind it too much yet either.

Good luck with it all.

Thanks everyone. All of this is really useful. Think I'll contact the RDA and at least get him on the waiting list - just checked out the primitive reflexes on google which also sounds interesting...thanks v much.