weakness on the left and poor hearing on left side, is it linked?

[kreamkrackers]

dd1 has got weakness on her left side (although it's not officially been said to us yet), the ot has noted it down that most of the time her left arm just hangs to the side and i've worked really hard at bringing it in but she still seems to 'forget' it's there. the physio hasn't been to review her lately but when she's crwaling and gets tired the left leg gets dragged. if she is willing to try to do some walking using her k walker than her left leg tends to turn to the side and again gets dragged.

on all her hearing tests it's always noted that she has slight loss but more so to the left. is it just coincidence or is it linked in?

she has digeorge syndrome but had a bad time when she was first born, on the third day she collapsed and went into multiple organ failure due to her having a complex cardiac condition which we didn't know about until the duct in the heart started to close over. i still feel that the bad time she had when she was born has contrabuted to this, i don't feel like it's just because she has digeorge syndrome but i may be wrong.

[magsi]

Hi Kreamcrackers.

Our ds1 has cp in the form of a severe right sided hemiplegia. His whole right side is affected including his eyesight in his right eye. Your post just sounded so familiar to ds1 in that he forgets he has the right arm, and the leg is much weaker than the left one. I must say though that his hearing is o.k, but I am sure every case is different. I would assume that the hearing loss would be linked in with the fact that she is much weaker on the one side, but of course that is just my opinion. Has she ever had an MRI scan?

[kreamkrackers]

no she's not had an mri but i've always wondered why they haven't done this as i feel it should have been done. it looks like another thing i'll have to push them to do.

her eyesight i think is perfect, we thought she had a squint but she's passed the eye examinations fine and finds the smallest of things which she either tries to eat or passes them to me (she's such a sweetie)

i don't know why but i feel like the hearing is all linked in but i wasn't sure whether it could be.

[Jenkeywoo]

Hi Kreamkrackers, my dd also has hemiplegia and although she is affected only mildly it does sound the same as the my dd's hemiplegia; it is very typical for children with hemiplegia to almost 'forget' that an arm or leg on that side is affected. To me it makes sense that if the whole of one side is affected that then could include hearing as well. We are convinced that dd's constipation is related and maybe she has a section of her bowel that is not responding so well on her right side of her body but can't find anything medical to back it up. I think you sound like you're really on top of things and it's good that you have OT in place but as Magsi said it is probably worth persuing this further and pushing for an MRI. Best Wishes.

[kreamkrackers]

i'm now convinced this is what dd1 has. it's upsetting but also i know it's better to get a name to something. if her heart condition hadn't been missed on the 20 week scan and if when we realised she was poorly somebody listened to us straight away this might never have happened to her i suppose i have to be really grateful that her life was saved but i think this could have been prevented.

i also think that she has asd mildly. it's hard knowing there's more wrong with her than just having digeorge, it's hard enough dealing with one thing but then more keeps getting added. i know how lucky we are though as things could have turned out far worse than this.

[Jenkeywoo]

Before my dd got diagnosed someone here pointed me in the direction of www.hemihelp.org.uk/ - it may be that your daughter isn't affected but it's a great website with lots of good information and support. I can understand how upsetting it must be to feel that some of your dd's problems could have been prevented. My dd stopped moving at 35 weeks and I took myself off to hospital - I was sent in an ambulance to the big hospital nearby with the intention to deliver her straight away but instead they monitored me for another 10 hours and by the time dd was born we were close to losing her. I will never know if her hemiplegia is a result of having waited those extra hours or if it is the reason she stopped moving in the first place.

Hang in there and keep in touch.

[kreamkrackers]

that must be really hard for you not knowing. if they'd delivered straight away and she still had hemiplegia than you'd know for definate but thinking a hospital might be to blame makes things really hard.

dd1 was lying in my arms dying and i told the hospital we took her to (she'd already been discharged and due to catchment area the ambulance took us to the nearest hospital not the one she was born in). they thought i was over reacting and left us waiting, when the paediatrician finally looked at her we were rushed out of the room. the next time we saw her she was hooked up to loads of machines and was told she stood a 30-40% chance of survival. she was transfered to alder hey where they saved her life.

there's no time to sit and grieve over what has happened we just have to get on with it but it's hard. i find myself feeling angry and sad but then over joyed and thankful. i keep thinking i'm dealing with whats happened but then it comes back and hits again, i don't think i'll ever truely get over what has happened to us

[Jenkeywoo]

I'm so sorry you and your family have been through such a hard time - some days it just doesn't seem fair does it? but like you I know my dd is lucky to be here and I have to hold on to that but it's not always easy. This is why places like Mumsnet are what keeps me going sometimes, here you can say and feel what you don't always want your close friends and family to know. Thinking of you.

[kreamkrackers]

thanks. my family don't really seem to care or have any understanding of what we're going through, it nice to know there are people out there with similiar experiences but i wish there weren't as what we've been through is hell

that link is really useful. i definetely need to push for diagnoses now but i know hand on my heart that she has hemiplegia.

thanks for all the advice and support

[kreamkrackers]

does your lo walk? if so what age did they start walking from? and what age did they do other things from like sitting, rolling over, crawling?

i know they're all different but dd1 couldn't support her head until she was 5 months old, she started sitting independantly at 15 months, rolled over at about 18 months and was almost 2 when she started crawling.

everything we've done with her to develop skills has been very hard work and she's needed a lot of input, it's strange to see her 11 month old sister naturally come to similiar abilities as her and she's 3.

[Jenkeywoo]

My dd is 15 months now, she sat at 11 months and rolled at 13 months. No sign of crawling or walking yet. We have been told unofficially not to expect walking before aged two but of course it all varies so much. All I want is for someone to say to me - 'your dd WILL crawl at X age and WILL walk at X age' but no-one can.

[kreamkrackers]

which i thinks the hardest thing. we got told that with digeorge it'll be delayed until she's 2 but that's been and gone which really has upset me that she's more behind than i ever thought she would be.

her left side was weak as a baby but as we only seen her upper body movements as there were no movements from hips down until she was over a year old i put it down to her heart surgery (her chest had been left open for 2 weeks after her op as she swelled up that much). then when the left leg started dragging it never really clicked at first i think i was just so pleased that she was moving. but now i know it's much more than just dragging she has got definete weakness. i just wish she'd remember her left arm is 'there'. she struggles to do simple things like feeding herself still.

[Jenkeywoo]

forgetting the arm is there is much more of a problem than you can explain to others isn't it? dd looks at us incredulously when we try to push her arm through the sleeve of her clothes! - she genuinely doesn't know what we're doing as she has forgotten she has an arm there!. I'm forever having to 'pick up' her arm when she's in the high chair as it just tucked in by her side. I also wish she could raise a cup to her mouth to give herself a drink - little things eh? Anyway, had better be off now. DH has the puking bug I had at the start of the week and is looking like he needs a bit of attention!

[kreamkrackers]

hope he gets better soon, we had it last week and now i'm starting to come down with a cold, i blame this horrible weather.

[saggarmakersbottomknocker]

kk - I know you've had a look at Heartline before and the board is really busy but please come over and have another look. There are a couple of mums whose chilren have Digeorge and are in very similar situations to you. And a lot of us who had very shocking first years.

It's hard to 'get over' those times when new stuff is springing up seemingly daily.

Take care

[jenk1]

hi kreamkrackers
my dd -3 hast left side hemiplegia, it is classed as mild.
she didnt walk until she was past 2, she never rolled over until nearly 2 and when she crawled she dragged her left leg behind her, she walks now with a limp, but she has come on a lot, i feared she would never walk.
its very hard when you realised that they have a disability, i knew she had CP even before the paed would confirm it.
hemihelp is really good and so is this website.
hope you are feeling ok
jen
x

[magsi]

Hi Kreamcrackers

Our ds1 didn't walk until he was 4. He had hardly any neck support at all before the age of 1. He cannot use his hand, but will use his arm to 'prop' things or hold pages of books etc. His vision is only about 45 degrees in the affected side so the whole right side is like a big black void, which make constantly reminding him to use his right arm relentless. And lots of bringing the arm into view (much to his discontent!). Still, his body has adapted accordingly and he can hold a book with his toes when reading and turn the page with his hand really well. He is still really wobbly, but can move quickly when he wants to. I will never forget when he took his first steps at 4 and I don't think he will either!. A fantastic moment. When we look back at his achievements and how far he has come and what a happy contented boy he is (most of the time!) and the added frustration of his not being able to talk, it is almost like he just has that extra 'something special' that makes him the delightful boy he is.

For your dd1 to have gone through all that she did at such an early age and pulled through just shows you she has the special determination and magic that so many sn children seem to have. I am sure your emotions are all mixed up, as mine have been since day 1. It never goes away, but you work through it and will take absolute joy in watching your dd achieve every little 'step' of her life.

[kreamkrackers]

hi and thanks for all the support.

i am joining heartline now, been looking on the board and there are a lot of children with digeorge on there which is going to be a big help to me.

i really want her to walk soon, i know she probably will walk eventually but it's going to seem really strange to me if her little sister walks before her.

i've got so much going on at the moment and i feel completely worn out. i've decided to give up on bf as well to see if her sister will become a better child as i'm really struggling to cope with her. sorry going on abit about other things now i'm just finding life with a sn child and a clingy baby that doesn't stop crying very draining.

dd1 has been accepted in to a sn school now but the nursery placement doesn't start until september and i don't know how i'm going to cope until then but i suppose i'll have to there's no choice about it.

at the moment my head is all over the place i'm so depressed again but don't want to get help for it. i have noone in rl i can talk to, dp is so busy with work and stressed out so i don't feel like i can talk to him. i feel empty inside and i hate feeling like this, but then it changes to anger, i'm so bloody pissed off with all of this i know i sound bloody selfish but why us? it just doesn't feel fair i had a hard life growing up and now i feel like my whole life is never going to get any better

[kreamkrackers]

sorry about the post last night, i was at a really low point. i'm still finding all of this really hard, i seem so busy all the time and i'm constantly worrying about dd1.

dd2 turns 1 on friday and we're hopefully going to the zoo so at least i have something to look forward to this week.

[saggarmakersbottomknocker]

kk - I've said hi over on HL.

You're entitled to feel a fed up plus you've got your other baby to cope with too. Don't be hard on yourself.

They're organising a bit of a meet-up in your area on HL. Maybe you could get to that - it'd do you good to have some RL contact with similar mums.

[kreamkrackers]

i've been invited already

the only problem is getting there as we both don't drive but i'll see if it's easy to get to using buses. it'll make me feel loads better to see people in rl but i am so shy in rl.

thanks for inviting me again, i'm glad i have other people to talk to now. i don't know why i didn't join when you first invited me, i think it's because i'm not very good at remembering all the different cardiac words out there so felt a bit out of my depth with it.



having a really bad day with dd2 again, she's taking bottles fine, she takes 7oz which dd1 can't even have so it's really stange seeing her take in so much. i can see more teeth coming through so i think it's that. we need to get her hearing checked out as dd1's nurse pointed out that it could just be a sensitivity to noise why she's so bad as she hates high pitch sounds and is terrified of the hoover. dp doesn't think it's this though as she cries most of the day. i've learnt to cope well in the day, most of the time, but night time can be so draining. even when they're both asleep i tend to reflect on the day.