Hi there,

I am not sure whether I'm strictly speaking allowed to post in here as my little boy hasn't received any diagnosis although we are expecting to be told at a hospital appt in 2 weeks that he has cp.

Brief history ~ He's a twin (twin 2), born at 37+5 following no growth, then poor dopplers then no fetal movement and when born was seriously ill, reflective of being without adequate oxygen supply for some time. Initially when we brought him home he had poor tone but was otherwise well.

He's now 11 months and has started falling behind with his milestones, does a unique style of commando crawl, has just mastered sitting (although when tired he can still struggle with this) unsupported but is unable to get into sitting position himself, has also just started cruising in the last few days but is still very wibbly and lacks good balance and control of his legs and body.

But my question today is that for the past couple of months has been struggling with eating. He seems to squirm a lot, as though he's in discomfort; we wind him throughout his meals but feeding can be very hit & miss. We have a hospital appointment next week to discuss the fact that he's not putting on any weight.

However this week he's seen a physio for an assesment and she found he had very low tone in his legs and trunk, and I'm wondering is the poor trunk tone is actually quite relevent to his feeding difficulties.

I was just wondering whether anyone else's loved one's have/had poor tone in trunk and also had feeding problems? I feel a bit guilty that all this time it may be that he's been in serious discomfort due to not being able to support his trunk properly, uncomfrtable digestion, etc, hence the poor eating & weight gain; we just thought him to be a fussy eater!

Also, are there any tips or things you've done/used which have helped with this?

Thanks.

Dear Katie,

My youngest son Will is 8 and is still undiagnosed. He has low muscle tone - what I had thought to be a very cuddly baby was actually a very floppy one! We first became aware that things were not right when he wasn't achieving his milestones. His sitting was late and like your son unreliable and he too developed a unique style of crawl just before he was one. He was borderline failure-to-thrive as he used to eat a lot but gain no weight, although I was never aware of it being unconfortable for him. It seems likely to me that your son's poor trunk tone is relevant to his feeding difficulties.
When Will was 20 months old we starting doing The Scotson Technique (TST) exercises and within a month saw some amazing changes. His diaphragm strengthened and his breathing improved (not that we had been aware of how weak his breathing was), his crying got louder and he started to babble. He started to digest his food properly and began gaining a little weight. In the months that followed we have seen numerous changes. I do think that TST exercise would be very beneficial for your son. There are a number of other postings about TST on this forum - have a look and look at the website: www.scotsontechnique.com - the video on the homepage is worth watching and the before and after pictures are interesting.

Best wishes,
Sarah

Hi Louise,

Yes Harry had suspected reflux when he was newborn (was very very sick constantly & all the other symptoms) however was only ever on gaviscon which he has been weaned off about 6 months ago.

We're going to mention that at the hospital on Thursday as we also wondered whether he is possibly a silent reflux'er still.

Thanks x

Hi Sarah,

Thanks so much for your reply, TST sounds interesting, will take a look a the link.

Great to hear how it's helped Will and how well he's doing.

Thanks again,

Katie x

Hi
Has anyone mentioned reflux to you,does he possett alot or have wet sounding burps ? It can be very painful and put children off eating. Its can be controlled with medication or if very serious surgery.
Louise