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A bit down...

20 replies

eidsvold · 09/03/2005 03:03

Just back from playgroup and feeling a bit sorry for myself. There is a little girl there who has prada willi syndrome - one of the features of that being low muscle tone - has started walking for the first time- unaided - although she has afos.

Felt a bit sad given that the little girl is not even two yet and poor dd is heading towards three. Despite her intial rush a few weeks ago - no other effort has been made to walk - let alone unaided like this little one..... I am also wondering of afos will give dd1 the stability she needs to help her walk?!?! physio does not seem to want to even discuss that option....

I know dd1 will get there and then I will be moaning that she is off everywhere and I can't keep up with her - and I know that there are plenty of others out there with far more serious things to deal with.... just feels like things are really getting me down at the moment.

I am even beginning to think on the odd occasion that dd2 will walk before dd1

Don't worry about me - just having a pity party

OP posts:
suzywong · 09/03/2005 03:56

oh love, sorry you are feeling low

wish there was something constructive I could say but am not very knowledgable. Thanks for the pics they were great.

Why not treat yourself to a whole pack of caramel tim-tams.


eidsvold · 09/03/2005 06:19

thanks suzy BUT that would do no good at the scales..... doing ww and have lost 5.5kg so far and have about 50kg ( not really but it feels like it) to go...

Having posted that - this afternoon dd has been wandering the house with her doll's pram walking up and down the hallway. No doll in sight - just phonebooks weighting it down but she does not care...... she looks like a 'proper' little girl walking around with her pink doll pram.

OP posts:
KarenThirl · 09/03/2005 06:56

Keep your chin up Eidsvold. As you said, dd will get there in time, maybe sooner than you think if she's pushing the pram around the house like she is. I think it is easy to get down when other people's kids seem to be leaping ahead and leaving ours behind - we're only human after all and there will always be that element of (dare I say it?) competition between parents. Anyway, pity parties are good - you have to let it out or you'll explode.

Dingle · 09/03/2005 10:24

eidsvold, I know it is so hard, but it does absolutely no good in comparing your beautiful dd's achievememts with another childs. I have done it myself and all it has ever done is make me look at the negatives.Think of all the things that she is doing and I am sure that things would not seem so bad.

I don't know whether by telling you this it will help or make things worse,but here does.

My dd was cruising around furniture easily and everone thought that she would be walking inpdependently by 18 months. She didn't do this until 21 months at which stage were about to lose our home visit from Physio. On our last appointment I was told that dd had no problems and that she was not doing anything that I should be "concerned" about! A month later at our group physio session, like a bolt out of the blue, they said about the possibility of dd needing AFOs! I can remember crying on my way home from the hospital-it was all just such a shock and I was so angry that her "problems" hadn't been recognised before.
It took them a year to decide that her walking wasn't improving sufficiently and that they would try the AFOs. She has been wearing them for part days since November and her walking has improved so much it is unbelievable.DD still has a wide gait and hyperflexed knees, but it is improving with time.

Hopefully your dd,although walking that little bit later, will not have these issues to deal with. Perhaps my dd wasn't really ready to walk so early!

Is there any particular problems she is having? What exactly has your physio said? What sort of exercise program are you doing?

Sorry that I can't help, but feel free to email me if you want to!...a bit of self pity every now and then is very understandable.

{{{{{{{hugs}}}}}}}} Dingle.xx

eidsvold · 09/03/2005 10:34

unfortunately dingle - we have only had six physio sessions ( of any real worth ). In the UK dd1 had a group session of physio and ot once a month for an hour. WHen we got here to Aus she was finally given physio - about 30 minutes a week for about 6 weeks. Then our physio went on compassionate leave ( last sept.) she is finally back and dd1 had her first session for the year yesterday. We are not doing any programme as such - just weekly physio at this stage for 30 minutes until Easter holidays and then see what happens next term. ( physio is done on a school term basis) We simply have different tasks to work on.

I mentioned to the physio my concern about her rolling her feet in etc. She simply said because dd1 has a wide stance at times that causes her feet to roll in. I think she is also rolling in when she is walking even though her feet are close together iyswim. I don't think she feels stable on her feet without some sort of support... hard to describe but you will know what I mean.

I know she has come so far - if I think about the last six months of last year. When we left England dd1 was commando crawling and very rarely pulling herself up to stand - in fact she hated it. By Christmas, she was cruising, crawling, bum shuffling, pulling herself up to stand and standing doing a task for a long time. Add to that self feeding and all the other stuff she has mastered - I know she has done brilliant work.

I just think she will be so pleased with herself when she can walk - she loves playing chase games with me... she will think she is sooo cool if she can walk. I am not competitive - even with nt dd2 just feel for her wanting her to be more mobile and hey to give my back a break... very sore and painful at the moment.

I think I will bring up the afos next time we are at physio.

OP posts:
Dingle · 09/03/2005 10:47

What shoes is she wearing?

eidsvold · 09/03/2005 10:50

none really - in the UK she was wearing clarks cruisers mary jane style and then trainers. Here in Aus - At home no shoes - when out - depending on where - she wears some sandals that have a moulded instep that support her feet a little.

OP posts:
Dingle · 09/03/2005 10:59

If you feel extra support around her ankles would benefit her, why not ask about Piedros? DD was given them as soon as she was cruising almost!

Other than that, I used to put her in ds's old timberland boots. They come up above that ankle and I really think they helped give her that extra support. Even the orthotist commented on them!

What size is she eidsvold?

eidsvold · 09/03/2005 11:07

she is wearing size 4 now although I have not had her measured lately - note to self- must do that. I found some amazing leather sandals that came up around the ankle - discounted to some ridiculous price... unfortunately as they were sell out summer stock - could only find one shoe - no matter how hard I looked ( imagine mad crazed woman crawling around store looking under shelving etc) I could not find the other one in her size and none left in her size anywhere in Brisbane. I did buy the next size up and figured when she was walking - these supportive sandals would be helpful.

Might ask the physio about that - as it is coming into winter might be an idea, Have been looking at trainers in readiness - so might be a solution there.

OP posts:
Dingle · 09/03/2005 11:13

We still have some of dd's old Piedros here!! Hardly used simply because she grew out of them so quickly, especailly as they measure and then take weeks and weeks to come through (and that was lucky!) Not sure what sizes we have but would posting them to you even be an option? How much would it cost?

eidsvold · 09/03/2005 11:16

I suppose I could check her feet by measuring them. I will check with the physio next week but that might be an option - no idea about postage costs... what a kind offer - leave it with me and I will look into it. feeling a little better - guess you know how powerless you feel at times....think that is something I reallly find hard to deal with.

On a plus - dd2 rolled over for the first time today - and then screamed as she hates being on her stomach. She has been pushing up on her side for a while now.

OP posts:
Dingle · 09/03/2005 11:19

Have to go now!! Got to collesct dd from nursery.

I try to have a look at the physio program we were given at dd's cruising stage and see if it's worth emailing you a copy.

Chin up, great rolling!Just let me know about the Piedros and I'll see what I can do, they are only collecting dust and using space!

eidsvold · 13/03/2005 22:22

can you believe in the past week since that day at playgroup - madam has been walking using her pram or her walking all around the house. She spent yesterday afternoon using the walls in the rumpus room to walk around downstairs. SHe also seems to want to walk more than she originally did.... I guess we just keep encouraging her and see what the physio says.

OP posts:
Blossomhill · 13/03/2005 22:23

Ah bless her eidsvold

I know it's hard and sounds like a cliche but she will get there in the end



eidsvold · 16/04/2005 23:22

Ahh Dingle - just wanted to let you know we have bought dd some clarks first step boots for winter thinking they will give her added support. SHe really rolls her ankles in when she is walking. We also bought her some trainers - soft and not so chunky trainers. The woman at the shoe store was brilliant.

When I asked about trainers she bought out two pairs - she looked at one and just said nope - too clompy - not good but these will be perfect ( soft cute pink trainers)

As I watched dd1 walking around a friend's garden - she was putting her feet down inside arch first - no ball to heel..... SO am fired up to speak to physio about splits or foot supports or something on Friday when we see her again.

So if I have no success - I might take you up on your offer of the boots - although they may be expensive to send and I would not want to put you out. Am also thinking if she is not referred by the physio to get the GP to refer her to a podiatrist......

any hints on what I should say to the physio?!?!? She seems reluctant to refer people for AFO's - the little girl I mentioned in my first post also sees the same physio and she was really reluctant to refer her too.

OP posts:
Dingle · 17/04/2005 00:14

I've posted on your other thread, but just something else, I don't really know if it's any consolation but...

..over the last few years we have really been trying to make our garden more child friendly, it is on a slope and it used to have this huge concrete path down the middle of it, jutting out in steps. Last year, we finished levelling it slightly, raising borders, digging paths, laying sunken slabs...but still last year watching dd in the garden was awful. She seemed so unbalanced and was forever falling over.
We only have the last bit of patio to finish now, and a few weeks ago, we sat under our new pergola and watched the children as we sipped a glass of wine DH and I were amazed by the way she was running around, so happy, so confident, stopping at the steps down to the patio ready to bump down on her little bum!!!
Sorry for the waffle, but hopefully you will understand what I am trying to say to you. I don't know whether it is just our dd's time, an effect of the AFOs or a combination of both..
Whatever it is, you dd will have her time too!
Be strong with you physio!

Pages · 17/04/2005 12:06

Hi Eidsvold, I know how you feel. DS looked like he was going to walk last August and still isn't, independently. Your DD is ahead of him in that he has only just started being willing to push prams, etc around a bit. He walks holding one hand, but he is 2.7 and I can't believe my brother's NT 1 year old is going to walk before him. I feel so dreadful every time I see my brothers and their NT children running round and doing everything my DS is not. The physio predicted he would be walking my March latest and here we still are...

Would be grateful if somepne could tell me what AFOs are? DS has peidros which really help but he is still going to be wobbly for a while yet.

anniebear · 17/04/2005 12:44

sorry you are feeling down eidsvold.

It is so hard not to compare with other children, even parents of NT children do it!!

But is so much harder when your child has SN.

I get told not to compare my twin girls (one SN one not) ....impossible not to!!

Hope you are feeling bit better xx

Dingle · 18/04/2005 13:14

Pages, I have tried to do a quick search to find a decent picture of AFOs, but no luck.

Basically they are a little plastic splint, which the whole foot sits in and this extends up the back of the leg IYSWIM. These are strapped onto the feet/legs and a larger size shoe is put over them! DD was walkig at about21 months but with a very wide gait and hyperflexed knees. It was discussed about the possiblity of dd wearing AFOs about 18 months ago, mainly because of her "back-kneeing" but was put off for a year. She has been wearing them since November now and has come on in leapd and bounds, almost literally! HTH.

Pages · 18/04/2005 21:15

Thanks Dingle, I am going to telephone the physio and have a chat about them.

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