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Neck hyperextension and trunk arching


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#1 jogret

Posted 01 November 2008 - 11:07 AM

Hi Everyone

I thought I would post this as a general thread - I am usually tucked away in the epilepsy thread!

My DS (8 months) has developed a strong neck hyperextension and trunk arching reflex. It seems to vary in severity, some days are worse than others. FOr example, when trying to hold him sitting on my lap, he will arch back violently. When on his tummy, his arms will tend to go behind him rather than forward onto his forearms for weight bearing.

Overall he is making some progress and his OT seems sure that it developed due to combination of prolonged hospital time (lack of tummy time and movement during critical developmental phase), defense mechanism against multiple, invasive procedures, and added obstacle of seizures and meds.  

I of course worry myself sick over it. I have exercises and positions to do every day with him to try and bring his arms forward, to promote trunk stability etc. On a good day he will lie on his tummy with weight through the forearms, but this is not consistent. The same goes with unsupported sitting - on a good day we can get up to 10 secs, on a bad day he throws himself backwards with the strong arching reflex.

I know this is a common trait in children with CP; no-one has mentioned this to me yet but of course it is in the back of my mind.

Has anybody has any experience in this? Did anyone's child also exhibit this behaviour and if so, what exercises/therapies etc did you find uselful? Were you able to overcome it?

#2 Dani

Posted 01 November 2008 - 12:57 PM

My DD was an ex-26 weeker that has recently come back with mild CP (spastic dysphagia) and she used to do that too.

FWIW I had enormous success with this Lamaze toy:

http://www.storkgifts.co.uk/spinandexploregardengym.htm


Yes it states only to be used 0-6 months but can I say when your child is 830gm born they stay pretty small for quite a while. wub.gif  I would just lay her on it and spin her around...ONLY way she would do tummy time.

FWIW down the track she has VERY poor trunk control and took a fair amount of time to get her day TT'd - night  TT'ing is years off I reckon.  Bugger!

#3 SammiT

Posted 01 November 2008 - 02:05 PM

Hi There,

My son has a tendancy to arch in the same way as your DS, your description of your sons movements sounds exactly like my DS.  He was born at 32 weeks and as a result of bacterial meningitis at 3 weeks has what at this stage appears to be hemiplegia CP amongst a few other health issues as well.  It hasn't been officially diagnosed as he is only 13 months and our physio says it is usually diagnosed around 2.  She refers to him as having it though.  DS also used to have seizures until he was about 6 months old and has been on quite a few seizure meds in his time.    

We were told as you have been that this is partly a defense mechanism as he has spent half his life in hospital.  I am glad to say that it appears to be lessening as he gets older though, but is incredibly frustrating watching his development hindered by all these things.  

I used to find that sometimes he would go backwards due to purposeful arching and sometimes it seemed as though he lost balance, say for example if we were carrying him he would all of a sudden get wobbly and it seemed that he would fall if we didn't have a good hold of him IYKWIM.  But he has more control over his body now and can pull himself up better when he starts to tip backwards.  He is not sitting independantly at this stage but he is getting there original.gif  

There are a few things we have been told to do to help him with trunk strength they are: lots of tummy time (DS has missed lots of this due to hospitalisation too); sitting him on your lap say on one knee and allowing him as little support as possible (start with your hands around his chest and as he gets stronger slowly move your hands to a lower position until you can just support around his waist); a Bumbo is good but we find DS can only tolerate about 5 minutes or so before he gets tired; lots of practice sitting on the floor with you supporting and interesting toys in from of him to play with to encourage him to hold his head up etc.

When we aren't in hospital we also do Hydrotherapy (physio in water) which has been amazing!

We have one of the spin gyms that Dani mentioned which Cadel has outgrown, he is way too long for it.  If you cover postage I would be happy to send it to you if you are interested biggrin.gif

HTH!

#4 TheSmithFamily

Posted 01 November 2008 - 04:32 PM

hi there,

My son also did this and yes he does have CP.  He did it because he could not control his trunk at all and the tone would just kick in and he would throw himself back.  He now can control it most of the time, but when he is really tired or throwing a big 3 year old tanti he does it....which says to me it's involuntary and it's only less now as he has the cognitive ability to notice when his muscles are becoming severely un-cordinated.

bron

#5 jogret

Posted 02 November 2008 - 07:35 AM

Hi Everyone

Thanks so much for your replies, it's good to read some other experiences.

TheSmithFamily - my DS also does it more when he is tired, or when we are at the Dr's - I think he knows what is coming and the arching kicks in as a defense reflex. Which is always disappointing as he may have been going really well at home, but all the paeds etc see is him madly arching away - they never get to see him when he is relaxed and doing well.

SammiT - it sounds as though we have had some very similar experiences. I do all of the exercises you mentioned although I should sit him on my lap more. I find it disheartening sometimes that when I try, he throws himself around so much.

As I mentioned before, some days are far better than others. On good days he has now started to push right up on both arms when on his tummy, but on bad days the arching and stretching becomes too much of a hindrance, and his arms just fling behind him. On a good day he can sit unsupported for about 5 secs, on a bad day there is not a hope in hell.

We also use the bumbo - I find it especially useful for feeding rather than using the high chair, but he will become quite slumped.

I guess I just find it overall very distressing - like when I try to carry him around on my hip he either slumps right forward or arches and throws himself right back. I feel desperate for his trunk strength to improve and this arching to cease. I read an Occ Therapy article on this reflex and it described it so well, and how it causes all sorts of subsequent development problems such as the ability to reach and grab, which is my DS to a tee.

Dani - thanks for your information and that lamaze mat looks amazing.

SammiT - thats very generous of you to offer to send it - I would love to if that's OK. Do you want to PM me how you would like me to pay you the postage? Thank you so much!!!

#6 SammiT

Posted 02 November 2008 - 07:59 AM

No problems at all, I am more than happy to send it, as I said we no longer use it, in fact it is virtually brand new as Cadel spent so much time in hospital around when it would have been useful.  It is waiting with some things to go to goodwill but I would much rather give it to someone who might get some extra benefits out of it like your little man.  I will go to the post office in the next couple of days and find out the postage, then I'll PM you with some details.  Could you please PM your address so I can find out how much postage will be?  Thanks original.gif




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