pead appt next week, dont know where to start!!......(help pls)

[lucymum2four]

I feel like my minds drawn a blank of
all the things i wanted to tell pead.

keep trying to write a list.

and worring that i'm going to leave something out,something that could be of signifigance.

just feeling really anxious, as had feeling for long time somethings not right.

any advice on how i even go about writing a list?

[liahgen]

sorry don't know your background but you could start by listing your concerns as important as they are to you.

ie most worrying 1st

[lucymum2four]

sorry. my DD is 17 month
late to smile 5month
sit 11.5 month
only just started to lean onto her hands and standing in last couple of weeks.
bum shuffles but drags left leg
doesnt use left hand as much.
has irrateable cry.
sometimes very stiff/and gets very upsett.
easily startled
doesnt sleep v well wakes up screaming.
sometimes vacant and chews.
feel like forgetting more but what order of importance do i put that, and does it even make sense?

[liahgen]

yas it makes sense.

Perhaps just write it like you have here.

Can she weight bear on her legs?

[lucymum2four]

only just started to bear weight, but feet either turn out or one heel up, or legs wide apart.
was watching her the other day and she was laying on her back and was the first time she touched her foot. she is our 4th DC others did that not long after birth..
worried me even more .

[lucymum2four]

sits/sleeps in unusual postions too.

[liahgen]

I hope yu manage to ge some help for you all. Come back and let us know how you get on.

Sorry that's not very helpful at all is it?

[lucymum2four]

it is thanks, just nice to talk really.
dont know if daddy just refuses to accept it.
but doesnt really want to talk about it.

where as i would rather know whats wrong and what we could be doing about it.

just want whats best for her (like all mummys)

hope you dont mind took sneaky peek at your pics and must say what gorgeous kiddies you have, xx

[liahgen]

ah thanks, need to update those really.

For what it's worth I was concerned about dc5 last year, she didn't walk till 18 mths, crawled late , has an extra crease on top of one leg so they xrayed her and she's fine, their concern was developmental hip dysplasia.

Tbh i would be concerned with your dd too, best to know what you are facing imo. Dh will come round i'm sure, once he knows what he's up against. Men don't like the unknown ime and are afraid of their children being ill.

[lucymum2four]

thank you,

think he just bit funny with the emotions (like most men) glad you said you would worry too. as he sometimes makes me feel like i am overreacting.
although he did admitt that has seen my point and that as she is DC4 he had been looking at her like she is still 6mo baby. think it was when we watched a vid of a baby same age jumping and dancing on her bed, that he thought wow dd is far behind.

always getting the give her time/ she is last of 4/ only baby. drives you round the bend i think i know in my heart something just is'nt right..

but thanks again so much.

xx

[MollieO]

Try and give specific examples of behaviour too.

Ds didn't sit up until 10 months and didn't walk until 22months. He has hypermobility syndrome which means he struggles to control his joints. He had physio and has orthotics. We have to make sure he does lots of exercise to keep his muscle tone and strength around his joints. He is 5 now and finally can run without falling over.

Paed didn't advocate any intervention until ds started walking and then we had intensive physio.

[AlderTree]

Sorry to hear your situation. I know hospital paed appointments are scary. A lot hangs on what they say so you obviously want to get it right as the consequences of getting it wrong either way mean your dd not getting the help she needs as quickly as possible or being worried unnecessarily if she's fine. Best idea is not to try to write everything down at once. Add to the list gradually and talk to others who know your dd well about anything they have noted. Then sit down and go through it order of importance if you like and work out what you want to say and how you want to say it. You need to outline the difficulties she has and how these make you worried for her future, family life etc. Have you had a multi disciplinary assessment for her?

Finally can you take someone else to the appointment with you as support/backup. You may get emotional. Its tough when you list all the needs a child who is different from other children has, it kind of feels like a punch in the face even if you usually get on with it.

[lucymum2four]

thanks guys some real good info.

no we have'nt had any kind of assment this is first appt.

she is under a consultant specialzing in nuerology/nuerodissabilty.
so am i right to think its something to do with the brain/nervous system?

she is also crosseyed (most of the time)
we have a seperate appt within opthamology for that.

think what worrys me most is she will be playing then just look up and stare and chew her lip and become unresponsive when your calling her. then just go back to playing?

her dad is coming with me.
i dont want to sound silly but its like i have a feeling something not right..
always have had this feeling with her and didnt with other dc's. think i have ignored it for along time. never really done any of "normal" baby things. IYKWIM had op at 4 wks and bad UTI but still had same feelings of something wrong even after.a dr at time asked does she use her left side much..now i am wondering if he hd seen something wrong even then?

[AlderTree]

Your intuition is probably right. Neurology is to do with the brain/nervous system. It is difficult when so many people are always telling you they'll grow out of it or they are all different. If you know something is wrong you just know and you wont get it out of your system until it is diagnosed and acted on. It is also difficult to get the medics to see somethings wrong in very young children especially with brain stuff because you can't see what is going on until the child effectively misses that stage of development.

Then there is the whole road of getting needs met etc and treatment. But for now take everything one step at a time. Her past history is important though you can't concern yourself with the ifs/buts /maybe's of other medical professionals. Add to the list anyhting in her early development that struck you as odd or does so now you look back on it. Oh and you are not being silly, you are facing a very stressful time when you may have to come to terms with having a child with a life long disability/condition. You need support and you need to be strong yourself to get through it. Give the paed the facts and let them diagnose.

Oh and one more tip tell the paed how it is on a bad day - the worst she can be. Neurological/behaviour type stuff is often on a varying scale. Some days you wonder what you are worrying for, others you want a number of a medical professional to talk to now and tell you how to sort it out.

[lucymum2four]

you have said everything i have wanted to say and put it into better wording..

sometimes yes i do look at her and think its not that bad then others i just want a dr there just to yes this is whats up..

and your so,so right about other people saying oh there's nothing wrong with her so and so's Dc didnt walk till they were such & such age.. given up trying to explain.

and if there is something i know these are the same people that will give you the aww bless her's.

what ever is wrong does'nt change how we feel for her. she is just an extra special girl..who we love more than anything

just a shame that mainly the silly comments come from family members who have'nt really paid much attention to dd so would'nt know anyhow...

you sound like you have alot of experiece do you have a child with a nuero problem? if you dont mind me asking, x

[lucymum2four]

what can i do in mean time, when dd screaming in the night..

doesnt want to be comforted but gets very disstressed.