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Old Aug 28th, 2009, 12:51 PM   1
dippy dee
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Popping in to say hi and a little intro


Hi everyone i thought i would pop in and say hello.
Where to start well my little man has just been refered to see the peads as he has a noticable weakness in his lower body e.g he can not weight bear at all on his right leg and only a small amount on his left leg, he can also not sit up, his right leg turns out a bit and his foot quite a lot. He has a very deep sacral dimple and the h.v says it could be a factor
I am trying not to google it as i know i will probably get scarred witless if i do.
Does anyone know anything about these and how they can be a factor in weakness in the lower body?
Thankyou in advance.

UPDATE.
Well thanks to you ladies on here we have just been to to see the consultant for the results and Harley has sb he needs more tests and i couldn't take it all in but we are having another meeting next week to go over it with the specialists and i have to see some other person about him not been able to sit up etc and his lower body weakness which we have now found out thanks to these tests is also down his right hand side as well, and there is a high possibility jack has as well but he has to undergo more tests as his looks different if that makes sense.
Thankyou ladies xxxx



 
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Old Aug 29th, 2009, 15:08 PM   2
bex
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I don't have any help for you, sorry but i just wanted to say Hi. Is your son going to see the paediatricians at North Staffs? Niamh see's a consultant at North staffs although most of her treatment and ops are at birmingham. Hope someone will pop along soon with some help x



 
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Old Aug 30th, 2009, 05:44 AM   3
dippy dee
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Quote:
Originally Posted by bex View Post
I don't have any help for you, sorry but i just wanted to say Hi. Is your son going to see the paediatricians at North Staffs? Niamh see's a consultant at North staffs although most of her treatment and ops are at birmingham. Hope someone will pop along soon with some help x
Hi bex thankyou for saying hi, yes he will be going north staffs to see the peads i feel like i live there with my 3yo and harley with his heart and now this i only live a 5 min walk away from the hospital thank goodness, if ever you are there again and want to meet for a cuppa after then give me a shout, we spend time at b'ham childrens on the cardio ward as jack my 3yo has holes in his heart and harley was diagnosed as well with them, kids hey x



 
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Old Sep 3rd, 2009, 14:24 PM   4
Emmylou27
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Hi

Firstly , I know this must be worrying for you.

Secondly, please, please don't google it - you'll just freak yourself out. What you're describing could (and I only mean could) be a form of Spina Bifida. The deep sacral dimple could indicate Spina Bifida Occulta - a form that can affect 5-10% people! If you do want to look at more info I'd recommend http://www.asbah.org/Spina+Bifida/in...idaocculta.htm as it explains everything pretty well.

Try not to worry too much about the weight bearing or foot pointing out etc. My little girl, Daisy was born with the most servere form of Spina Bifida, yet we have been told she will be able to walk, run etc. There is so much that can be done to help. Her left foot points out too and the Orthopedic chappie has said this can be sorted in a number of ways if needed. Daisy's condition was undetected before birth and so our learning curve has been pretty steep - really, although it's a scary term, everything will be just fine with your LO.

If you want to pm me, feel free and I'll tell you what I can, or if you just want to talk....

Hope all goes well

xxx



 
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Old Sep 4th, 2009, 10:30 AM   5
Emmea12uk
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Hello!

I agree with EmmaLou - This is likely to be spina bifida occulta, the most mild form of spina bifida. My son has the most severe form the same as Emma's little girl and he can walk and do everything a normal child can do. He has a weaknss in one leg and weak ankles which are supported by special boots (which are very cute). He also cannot empty his bladder and finds it difficult to pass a bowel movement.

Try not to look it up as it will freak you out. SB can be very bad or very mild. With only a dimple, it is only going to be mild.

Problems normally associated with SB are movement problems (from paralysis to weakness), problems having a bowel movement and problems emptying the bladder. You need not be concerned with these unless your son is constipated alot or has had urine infections. Also, look out for a raised soft spot and an expanding head circumference, problems feeding and doing funny things with his eyes - as this could indicate hydrocephalus - a problem often associated with SB.

However, I must stress, that if your has none of these problems, they are unlikely to develope in the future.

I myself have acculta and I only very recently found out becuse i have hip pain. I dont have any other problems.

As well as asbah, you can also talk to other parents of babies and young children with SB on http://www.facebook.com/home.php?#/g...id=34787529880.



 
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Old Sep 9th, 2009, 05:26 AM   6
dippy dee
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Girls i owe you a big THANKYOU you have just done something it has taken my peadiatric team 3 years to do, you have partly described my baby but have 100% described my 3 year old he to has a deep sacral dimple and has so much trouble with his bowels that he is on sodium picosulphate 5mls every night and 4 movicol sachets a day due to severe constipation and problems moving the feaces down the bowels ( on the last xray it was thought he had several weeks of poo inside him) they were putting it down to everything from been a 26 week preemie to him attention seeking and he is due to go in for a top and bottom clear out in a couple of weeks. I have just phoned his health visitor and she is coming out in the morning to see me, she is appauled they have not checked him for sb already.
I owe you my sanity and a hell of a lot more, if this ends up as the diagnosis then i will owe you both so much so thankyou from me and Jack who could finally get the help he needs xx



 
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Old Sep 9th, 2009, 07:43 AM   7
Emmea12uk
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I am increadly alarmed that SB has been checked already!! Your poor boy must be so uncomfortable. Push for an MRI asap on both and then if it does turn out to be SB, then you need to speak a solicitor I think. Correct diagnosis of your first son could have prevented the problems you are having with you second son.

I am appauled! I hope you get your answers soon.

Can i just say I that is a hell of a lot of laxative your son is having! My son has only 1 sachet and he suffers badlt. Have they looked in to other methods of bowel management like enemas?



 
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Old Sep 9th, 2009, 08:19 AM   8
dippy dee
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Quote:
Originally Posted by Emmea12uk View Post

Can i just say I that is a hell of a lot of laxative your son is having! My son has only 1 sachet and he suffers badlt. Have they looked in to other methods of bowel management like enemas?

Hi hun it is a hell of a lot of medication and the worst of it is it doesn't work that good on him and i'm lucky if he goes twice a week, he is going in in a couple of weeks for top and bottom medication to try and clear him out, tbh i think it will work and empty him BUT then it will just start all over again, they say he will be in hospital from a few days to a week clearing him out as every now and again we will have fetal vomit which terrifies me but they will not admit him now as he is prone to it every now and again.
Can i just say thankyou once again



 
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Old Sep 9th, 2009, 14:33 PM   9
Emmea12uk
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I use enemas on Tom and they work a treat, another woman I know uses high end enemas on her little girl and they work very well. The ones I use are like a savlon tube with a skinny bit on the end whiach you insert into the recum. Squeeze out the liquid and wait for the body to flush everything out. The high end ones have a really long and flexable tube which goes much higher an do the same.

Have they not tried these?

Also, if it does become a real problem, and there are a lot more steps before they do this, there are surgical proceedures available to put a small hole into the bowel onto the skin which water can be flushed down daily.

Has either of them every had a urine infection?



 
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Old Sep 10th, 2009, 07:27 AM   10
dippy dee
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So far they have tried syrup af figs, lactulose, movicol that has been upped at every appointment and now movicol and picosulphate, it took me 2 and a half years to get someone to listen and it was only after we moved areas and had a different hv that we got the referal. They checked to see if he was gluten intollerant but it came back ok but he is lactose intollerant and is still on sma wysoy which is a pain but hey if it keeps him well i can't complain.
Jack has suffered with a fair few urine infections and I suspected Harley had one again the other day but it came back ok when he was in hospital on his latest admission.

Thankyou for all the information you are brill, i am waiting for the hv to come round today and can't wait as Jack has been bullied at school today because when it is poo day he dances round on tip toes crying and his breath smells terrible on poo day and he sweats alot that also has an offensive smell, he went today and thought he was ok but apparently at around 10 ish he started and the teacher said there was a couple of children been unkind to him wtf i asked her to ring the min he starts as i suspected this would happen but no so now he doesn't want to go back tomorrow as he says they were nastys to him.



 
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