Consultant wanted to put PEG into DGS(CP) - Furious about it

[SayItWithWine]

The Disability Cons. suggested to my DD that DGS(CP) have a PEG fitted as he is still not on the chart for his weight (he is for height) (Cons thinks he cant swallow!)

Why does my DD have to explain that he can chew and swallow fine (he eats toast!!!), but is just a very picky, tiny eater. She gives extra vitamins, fish oils, adds pro cal powder and dense calories to his food - she literally cant do any more and doesnt need the stress of that. She shouldnt have to point out that he was 4 1/2 lbs at birth (37 weeks) and following a steadily increasing line just under the chart, and if he'd just been 2 lb heavier at birth he would be on the flaming chart! He was also exclusively bf for 6 months and the chart she uses is not for bf babies!

She also is determined to start him on baclofen and convinced he is quad spastic even though the Neurologist says he is not. He does not have spasticity but goes rigid when she mauls him around! Then sits back all relaxed and floppy!! If he takes baclofen he will be like a stranded jellyfish!! DD is not giving it by the way, except a small dose at night to see if it relaxes him with sleeping (he doesnt have muscle spasms btw doc - he is just a crap sleeper. My DD would KNOW! So cross and ranty as he is doing well and so was DD

r3dh3d, sorry to be nosy, but why would they want to induce puberty in your DD?

Hi Lougle - well one of her minor conditions means 90% chance of ovarian failure which means she won't go through puberty without drugs. Which is all very well in a NT child, but for a child with a developmental age of 8 months comes with Baggage. And the doctors advising/administering are the specialists in the minor condition - they don't come across a lot of kids like DD1 and they simply haven't thought of the issues.

Ooh tricky I don't want to be insensitive, but could a lack of puberty or at least late puberty actually be quite a good thing for your DD? I mean, no-one who has a developmental delay is going to find periody stuff easy, are they?

No, that is my point exactly Lougle. Plus a host of even less pleasant things. On the other hand, our bodies are designed to go through puberty and there are health implications to not doing so. And of course a pre-pubertal adult is going to get stared at. It's a minefield, but fortunately we've got a few years yet to mull it over.

oh redhed thats a tough one!
I get what you mean by them mentioning things years in advance so you get used to the idea, but hopefully ds will put on more weight, and get to like food rather than avoid it
I like sneezecaketheelder or sneezysenior? she does have her moments, it's ok to talk about her she's at work lol

Hi sneezecake, I have also always been in terror of the tube - my DS wasn't particularly small when he was born (just under 7 pounds) but steadily slipped down the centiles to just under the 2nd centile where he seemed to stay (although I haven't had him weighed since May so no idea where he is now!) He is small but healthy like your DS and his consultant hasn't been bothered about it. In fact physios have suggested to me that it is better for him to be on the small side as it gets harder to move the bigger and heavier you get! Also I found somewhere once a growth chart standardised for children with CP, and on that he was around the 50th centile - so I think that the NT weight chart is not necessarily a fair thing to measure against, our DS's burn up a lot more calories for even the smallest movement. I will see if I can find the CP chart again and post it.

We have also been told by the consultant that DS is quad spastic and I disagree and think he is athetoid. His problems seem to be much more with his trunk and lack of balance/control than stiffness.

here are the CP growth charts that badkitty is talking about, cant believe i forgot about them as i usually whip them out during one of these conversations!

Interestingly our Paeds have never bothered much about where dd2 is on the charts- just that she still grows and looks in proportion.

Sneezecake the WISER would have been more appropriate - but I have given in and keeping it simple!! This softening up business sounds bang on target, starting at birth, hint hint at CP so that you accept it more easily when it comes. DD was definitely softened up to accept the Baclofen! Sneezecake has gone to work and I am again later - hate job but there you go...

riven it must be maddening with your DDs diagnosis changing all the time. I think we all like a diagnosis (bit obssessed me sometimes) I think because you have an idea of what the progression is and can focus on what you need to do, and with SN the uncertainty about the future is crippling. I did read that the final picture is usually clear between 2-3 so maybe docs shouldn't jump in so early but accept they evolve? If the doc hadnt jumped in with quad spastic she wouldnt be talking baclofen which I am convinced is wrong for DGS.

Off to look at that chart now.

Thanks for that chart dd is just 2.7 yrs and totally off the chart for NT or spastic quad both height and weight wise. But bang on weight for height. That will be why she has out grown her walker, sitting support and AFOs. OT didn´t believe me when I rang and asked for her next appoitment to be brought forward as she doesn´t have any equipment that fits!

OMG thank you kitty and glittery for bringing these charts to my attention! ds os on the 50th centile for both height and weight I'll be printing and bringing these along in 3 months when we see the paed again.