# Popping in to say hi and a little intro



## dippy dee

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 :shrug: 
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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## bex

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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## dippy dee

bex said:


> 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 :dohh: 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 :shrug: x


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## Emmylou27

Hi :hi:

Firstly :hugs: , 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 https://www.asbah.org/Spina+Bifida/informationsheets/spinabifidaocculta.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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## Emmea12uk

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 https://www.facebook.com/home.php?#/group.php?gid=34787529880.


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## dippy dee

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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## Emmea12uk

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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## dippy dee

Emmea12uk said:


> 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 :hugs:


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## Emmea12uk

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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## dippy dee

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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## sam*~*louize

I don't really come into this part of the forum, as feel i can't offer help, but can i just say the advice you have both given Dippydee seems fantastic, i read the thread then couldnt not comment!

Hope you get it sorted for your boys soon, theyre damn cute!


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## Emmea12uk

Omg!!! It is vital that both children have a urodynamics examination asap! Go to your gp and demand an emergency referral. Go to every gp until you get it. Urine infections in a child with sb could indicate that the kidneys are being damaged which can lead to kidney fAilure and is irreversable. You might want to check with older one how much he can actually feel when he goes for a pee. He may not be able to feel he needs to go, or


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## Emmea12uk

Not empty his bladder properly.

Whilst we are at it, does the older one get headaches? Or doesthe younger one have any of the following:

rolls eyes downwards
have a raised soft spot
have no appetite 
sleeps an awful lot and is drowsey when awake
vomiting
larger forehead ( on it's own this is not an indicator)
a head growing faster than it should.

have you mentioned sb to anyone yet? I am very concerned that your son is being allowed to get into that state with constipation! There is a risk of poisioning. If he starts vomiting or gets a prolonged fever take him to a&e asap and refuse to leave until they have booked proper tests. I feel so sorry for you and your children. You must feel so helpless! Which hospital are you using?


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## Tegans Mama

I agree with Emma. If I was you I would be sat in A&E telling them there is something wrong with my children. If your children do have SB (sounds like they do) there is likely to be some associated kidney damage - I am serious, your children *NEED* their kidneys checking, like YESTERDAY. Kidney failure can be fatal. Everything else mentioned, yes it is serious but it is not in any way as serious as kidney damage can be. I really cannot emphasize that enough.

My LO has the same form of SB as Tom, and I cannot imagine her getting to this age with all her symptoms and not knowing what was wrong.


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## sophie c

i dont come into this section much but i just wanted to say i hope you get to the bottom of this and get a diagnosis hun :hugs: it must be miserable not knowing, i work with children with severe disabilities and a few have severe SB and they also seem to have problems with bowel movements and often get UTI's

xxx


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## dippy dee

Emmea12uk said:


> Not empty his bladder properly.
> 
> Whilst we are at it, does the older one get headaches? Or doesthe younger one have any of the following:
> 
> rolls eyes downwards
> have a raised soft spot
> have no appetite
> sleeps an awful lot and is drowsey when awake
> vomiting
> larger forehead ( on it's own this is not an indicator)
> a head growing faster than it should.
> 
> have you mentioned sb to anyone yet? I am very concerned that your son is being allowed to get into that state with constipation! There is a risk of poisioning. If he starts vomiting or gets a prolonged fever take him to a&e asap and refuse to leave until they have booked proper tests. I feel so sorry for you and your children. You must feel so helpless! Which hospital are you using?

Hi hun my 3yo has no appitite really he just picks at food, he does have a large forehead and head but that may be me thinking this, mmmmmm will add a picture on here for you to see what you think.
Harley really just has the lower body weakness other than that i have not spotted anything that is raising the alarm bells as much.
Well the hv spoke to the hospital and i have to wait for an call off of them, i'm still waiting so i think if i don't get it by monday morning i'm going to be camping out in A&E and demanding they see them.
My hv was pretty much useless but rang some docs secratery and now i'm waiting.:cry:


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## dippy dee

Here are a couple of quick pictures of Jack, is it me or does his forehead look larger and he does have a large head compared to my 5 year old.
 



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## Emmylou27

Hmmmm... it does look a little larger but I guess I'm hyper-sensitive anyway because Daisy has Hydrocephalus. I've attached a couple of pics I've just taken of her so you can see what she looks like...





Although Daisy has this condition she currently does not have to have anything done about it ie. shunt. She's had an MRI and although her ventricles are enlarged the spinal fluid is still draining how it should hence no need to do anything about it. So, if your son does end up being diagnosed with Hydrocephalus it may be enough that you just watch for the signs Emma's mentioned and carry on as normal.

I really, really hope you get some medical advice soon. I find it awful that you may have gotton to him being 3 with an undiagnosed condition. In a way I've got my fingers crossed for you that they can diagnose something then can actually start treating him and giving you both the support you need.

:hugs::hugs::hugs:

Em x


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## dippy dee

Thankyou hun, i keep going back and looking at the pictures of him and wonder if it is a "normal" size god will i ever stop fretting?
Daisy is so cute hun and i am glad the fluid is draining as it should and fingers crossed it stays that way.
I am keeping a VERY close eye on him to the point i think bubble wrap is needed, dh thinks i'm bonkers and just looking for problems so i am ssssssoooooo angry at him atm.


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## Emmylou27

Awww thank you honey, we're very proud of our little Dot!

It's completely normal that you would be fretting - I mean, you came on this board to ask about your LO and have ended up being able to match symptoms to your toddler. 

Although you quite rightly are sorting an appointment to get him checked out you should try not to panic too much (easier said than done I know!) Yes, SB and Hydrocephalus symptoms are matching and ringing alarm bells in your head but may be unrelated - you really won't know until you get him checked out, which I know doesn't make it any easier.

As I said before, we had no idea Daisy had any of these issues before she was born and so, even now, I read things about other children with SB and Hydro and start looking for similarlities with Daisy - what I have learnt though, is that there are so many variations with these conditions, they're all affected differently and you really can't compare one case to another. 

If your son has any of these issues, you'll finally get the answers you were after and the help needed but things won't suddenly get worse - if aything they'll get better. Try not to wrap him in cotton wool too much - nothing's going to get suddenly worse if you don't - to all intents and purposes he's just a normal 3 year old. Chances are, if he has Hydro and he's got to 3 with no issues, everything is still working how it should be. We've been told to watch for the signs Emma mentioned but the overriding thing we were told was that if she 'appeared unwell' with the vomiting etc. then it could indicate pressure was building - basically, just to act a bit quicker in taking her to the docs or A & E if she ever does seem poorly - that's all.

As Emma said, even she's recently found out she has SB Occulta which is what a sacral dimple can indicate and it's not affected anything she's done. Yes, it's worrying and I agree with the other girls on here with regard to the bowel issues - the sooner those get investigated the better but as for everything else he seems to me to be a normal 3 yr old (and a cutie at that!!) so please, please try not to worry yourself silly.

Take care xxx


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## Emmea12uk

Entirely agree with emma! His head does look mildly sb, not particularly hydro though, but the sb look can be seen in many a normal child. If he had hydro and needed emergency treatment, he would get very ill, so don't panic about, just watch the younger one for it.

I spoke to a neuro senior nurse about you and she advised me to tell you to go to see a consultant privately, as it would only cost his hourly fee and he could refer you to the nhs for tests etc much quicker. If there was a diagnosis he would help you legally, instead ofsweeping it under the carpet. Up to you, but if you get stuck!

She also said it is highly unlikely to have been missed, but that you should know if they have looked at it and that if they havemissed it, it is negligent beyond belief!

Good luck and let us know how it all goes!


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## dippy dee

Thankyou so much girls.
Emma :hugs: thankyou for speaking to the neuro nurse for me it means alot, they never have looked at him for anything apart from gluten and milk allergies and an xray to see if he was constipated other than that he has just been shoved on meds and that's it :cry:
I have spoke to dh about going private as the nurse suggested it and he said they have 2 weeks to see him or we will go private, atm he has no infections in the wee department so i am trying to look at like you girls have said, he has been like this for 3 years and other than his poo's and constantly falling and bumping he is a typical lad.
Here are some new pics as you can see him better here and yes i am a worrier but hey ho i am a mummy.
 



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## Emmea12uk

He is one cute kid! I don't think his head looks particularly SB, but it could be! Keep us posted wont you!


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## Emmea12uk

How are things?


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## dippy dee

updated on pg 1 thankyou ladies xxx


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## Emmea12uk

I am so pleased you have finally got a result! This means that after all this testing there may be light at the end of the tunnel for some of their problems. 

Are you considering legal action?

Please feel free to come over to my forum for families affected by SB or my facebook group. Both are linked on www.sbhp.org.uk. There are many many other mums who can offer you support or advice there. It will be great to have you there.


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## Tegans Mama

I agree, you should take legal action. The way you have been treated sucks. I'm sorry you got the diagnosis of SB but I'm glad you got a result.


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## dippy dee

Thankyou ladies, we are just awaiting Jacks other bits and bobs and then we will consider legal action, we are already taking action against the hospital from when Jack was born, they failed to diagnose cronic lung disease and a hols in the heart and a pda so the day after he came home i had to resusitate him and he spent 4 months in hospital until they realised everything that was wrong with him so after we get results these will be added onto the long list of things our solicitors etc are fighting for us.
We have been told that it is highly unlikely that Harley will sit up or have full use of his lower limbs and that they will keep an eye on the weakness in the right side of his body although he can use his right hand it is very weak and clumsy in movement etc, as for the rest we have been told to wait and see basically, but i got my answer as to why when my 3yo ds stood on his foot by accident that it didn't bother him in my mind.
Jack has more tests to be done regarding his bowels as things are getting worse despite tho sodium picosulphate and the movicol, there are talks of bags etc so we will have to wait and see but for now my lil man remains in pain when needing a poo.

My mind feels like it is blank but so full iykwim i am doing my day to day things trying not to think of it but then i do and i'm crying, that may sound a bit drematic to you but my lil man is not the lil man i had if that makes any sense, i see other babies his age sitting and learning to crawl and walk and i have to face the fact that my baby may never not do these things. The future i have for my baby may need a bit of modifying but i'm damned if he will let anything stop him lol he is using his arms to pull himself around comando crawling and he is starting to babble like a star.
Sorry just a proud mummy moment through eyes that are full tears.
Thankyou ladies for helping me i couldn't of done this without you xx


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## Emmylou27

:hugs:, nothing else, just :hugs:


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## sam*~*louize

aww :hugs: ive kept an eye on this thread. Im glad you got some answers donna, he's a happy lil star, was when we met him and despite difficulties he may encounter, he's still going to be your lil star!!


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## Emmea12uk

I know just how you feel, but I was prepared unlike you. Massive hugs.you have been through so much. I hope your children get the hope they need now. I am alwas here if you need a chat


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## dippy dee

Thankyou Emma i may take you up on that chat one day as i feel the thoughts, worries etc in my head are causing stress that is just rising and i need to get it out dh refuses to talk about it so it is just me and my thoughts, it is putting a stress on our marraige so is just what i don't need.
But on a good note my lil man has a new trick, he has learnt to sit up i am so happy as the consultants said it was one of them unklnown things that they just had to give us worst case scinario and if he did then it would be brill, well he did it so i am so proud of my lil man x


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## Emmylou27

Wow go Harley - that's fantastic news! Welcome to the world of proving the doctors wrong - our little ones are so strong and clever! x


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## Emmea12uk

Talk to me anytime! I know what you mean about the stress building up - as with everything stressful, it puts a strain on your relationship and refusing to talk about it will only make this worse! Why is he doing that? I suggest you go to someone to talk, like relate. They were a massive help for us. They just seemed to know how to make us talk to each other and listen.

I am finding it hard to believe that you have been given worse case scenarios at thus stage!!! You really have a truely appaulling hospital!! Have either of them had MRIs yet? 

Well done to harley for sitting!!


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## Emmea12uk

What sort of problems does harley have now? Do you have an idea of what he can feel/ move or any weaknesses?

Has he had any urodynamic testing for all his uti's yet?

So sorry you are having to go through this. It does get much easier :hugs: xxxx


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## dippy dee

Emmea12uk said:


> What sort of problems does harley have now? Do you have an idea of what he can feel/ move or any weaknesses?
> 
> Has he had any urodynamic testing for all his uti's yet?
> 
> So sorry you are having to go through this. It does get much easier :hugs: xxxx

We have had an MRI and he is waiting for a ct scan of his head, he has not had the one to measure his urine etc but there is talks of this happening soon.
His right side is very weak he can sit up now but only for a brief second then falls, always to the right, he doesn't weight bear on his right foot and he can pick up with his right hand but only with a claw like grip.
As for feelings we don't know yet.


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## dippy dee

Emmea12uk said:


> Talk to me anytime! I know what you mean about the stress building up - as with everything stressful, it puts a strain on your relationship and refusing to talk about it will only make this worse! Why is he doing that? I suggest you go to someone to talk, like relate. They were a massive help for us. They just seemed to know how to make us talk to each other and listen.
> 
> I am finding it hard to believe that you have been given worse case scenarios at thus stage!!! You really have a truely appaulling hospital!! Have either of them had MRIs yet?
> 
> Well done to harley for sitting!!

Thankyou for the advise :hugs:
It was our peadiatrician consultant who gave us worst case rubbish and he was so matter of fact and horrid to talk to but we have spoken to some other peopke there now and they were lovely.


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## Emmea12uk

Seems like things are finally getting sorted! All the best! X I am always here if you need to chat


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