Frustrated & sad,need cheering up!!

[chickensaresafehere]

Have posted before about dd2,2.11,severe hypermobility & severe speech delay.
She attends CDC,one morning a week,where she gets all her therapy,has been there since January.
She is making slow progress with her mobility,she cannot stand or walk un-aided,but is becoming more confident.I can see a difference & can deal with the fact that it will be quite a while before she walks on her own & even then she will have problems.
What is frustrating,saddening & even frightening me the most is that she is making no progress with her speech at all,the only word she can say is 'dada'.We have been makatoning for nearly a year now & the only sign I think she does is 'all gone',which,I must add,she uses alot!!The SALT she gets at the CDC is minimal & shared with 4 other children,was thinking of using DLA for a private SALT?!Her understanding seems to me to be good,she can perform tasks with upto 3 directions in.
We go back to see the community paed next month,so I will voice my concerns to him,the hospital paed hinted that maybe a trip to a neurologist might be a good idea?!
Sorry to whittle on folks but I see no light at the end of the tunnel ATM.She is such a beautiful,bright & happy little girl & it is so hard not knowing what is wrong

Oh chicken know how you feel am little bit further down the path than you.where abouts are you?

Ask for that neuro referal wish I pushed harder when ds was younger it's start that you got salt least aware sadly it's in all to short supply

if you could seen ds at 2.11 and then now it gets better do not give up on makton ds took ages to learn but is better now at 4.8 and he is walking in a wobbly fashion Indoors at least

Did you ask about the verbal/oral dyspraxia

And has the paed got education involved you can apply now for staementing

Oh and ask about the Nuffield speech I had chat with them before went to ican would recommmend them when dd is 4

Thanks Phoenix,was hoping you would pop up
If you mean where am I in the Uk,I'm in the NW.
Will ask for the neuro ref,though not sure dh will agree
The SALT aspect is annoying,hope to have a meeting in the next couple of weeks at the CDC & will tackle it with them,but am not hopeful for any more.
Have been reading up on dyspraxia and apraxia & she seems to fit into the latter,will ask comm paed about it next time.
CDC have said they will help me with statementing soon,as she will certainly need one to one in September.
Thanks

Apraxia is same thing just the us name but yes the speeech sounds familar when ds first signed mummy I cried but I am now ume fianally

How is she at blowing bubbles .chewing. And can she lick her lips?

Tell dh that it would be case of ruling things out rather than in with thr neuro might least help with some of the what ifs .I have more peace of mind now ds is under his care

have they talked about piedro boots at all?ds needed these to hold his ankles still to give stronger base we now progressed to afo

Something to make you smile yes ds does now use a wheelchair but we was out other day and someone was doing the poor boy routing totally ignoring him and aiming it at me .
ds delibratley ran over their foot and laughed she wS like it's ok he does not know what he was doing

lol ds was grinning away course he knew what was doing

Do not wait for them send the first letter now it takes 6months for statements and that's for straightforward one it was always obvious that ds would need one but it still took months

also start making noises about speech units/nurseries

Oh and are you doing hand over hand with the signing try getting picture of you so she can see then model her hands

I thought and was told ds would only lean 10 or so signs he now has well over 100 abed in his own fashion

She has piedro boots & has done for the past year.
She does not/cannot blow bubbles or lick her lips,but has no problem at all eating,although I have noticed she tends to swallow food more than chew it,but food does not fall out of her mouth when she is eating & she drinks from a cup with a straw without any problems,she can seal her lips around the straw & does not loose any of the drink IYSWIM.When we first saw the SALT,she was amazed that she had no problems eating or drinking!!She couldn't breastfeed though,would latch on but couldn't stay latched on,so we ended up expressing to put in a bottle & she managed that fine.
When she kisses you though she kisses with an open mouth & cannot seem to pucker up!!
We try to do the hand over hand when signing but she is very stubborn & tends to pull away
Will tackle head of CDC about statement on Tuesday then,do not want it to get to September & not have the help she needs,as then I could not send her.
A speech unit sounds like a good idea,will ask comm paed about it.
What happens when you see a neuro,what tests do they do,she has had an MRI,which came back clear??
Sorry Phoenix,so many questions!!

She sounds very much like ds right down to the fact he can mange s straw but Can not pucker up for a kiss.he got the oral dyspraxia/apraxia at 3.6 the verbal DVD followed at 4

at 4.8 he does try to talk but no real words as such more gobbly gook but it is better than it was and that's without much salt input other than me

.ipsea have a good template for first letter ,have you thought about playschools schools etc and have they revered her over to early years education team

ideally ds should gone to speech unit from the start but at that time was turned down as they thought he had devlopmrntal delay now not the case thanks to ican there are some on here with dc at speech nursery units

where we was the CDC stopped running there nursery was just assement I did not find out till after that there was a very good nursery that took mix of sn and nt kids but by that time ds was already in preschool.

Ds had MRI ,ct scan and has just had some muscle as neuro feels more than low muscle tone andhypermoblity but I just feel better for the more specialist input like someones taking me seriours rather than the community paed give it time scene

Thanks again Phoenix,you have given me some great info & stuff to think about.
How was your ds for potty/toilet training,did it take him longer than an NT child.,dd2 is still in nappies & does not know when she is wet/dirty??
She is also a real dribbler,we have been using the hyoscine patches for the past 5 months,which were good at first but now seem not to be working as well.
No-one has mentioned early years education team or speech units,but as I said I am getting frustrated at the lack of SALT input she is receiving,the physio has been better,piedro boots,major buggy,hydrotherapy & lots of input from physio & occupational therapist.
Will start banging on some doors this week & getting things going.If there weren't people like you about,I would really be in the dark,terrible isn't it?

Glad could help was this board that gave me advice when I first started down this route

ds was still in nappies till was 4 had no intrest in it did not care if wet or dry .has had problems with soiling but since he's been home been lot better so think was more about not being able to communicate the need to lsa

he is still in nappies at night no intrest at all yet

ds is also a dribbler been told is due to mouth muscles but it is getting better

Ds standing did not get better till he went into afos the boots was not enough .have they considered this?.Yes it does make disablity more obvious though

am envious of the physio input we got very little but have worked with private and this helped a lot .Reached the point before last summer where accepted ds will always have problems with moblity and we went from major to wheelchair

infact just after Xmas ds got his brand new chair that was built just for him it's tiny but he does now have moblity walk wise indoors on good days

The speech I am not giving up on though reality is ds will be a voca user .and will more likey use a computer for work as he has issues with pen holding might be worth looking at fine motor hand wise though your dd is bit younger yet than ds

The speech I am not giving up on

Chicken - as I have posted on this site before to people please look at the Myotonic Dystrophy uk website as a lot of your dd symtoms sound the same as my family. Myotonic Dystrophy is often misdiagnosed as the tests for the condition where only discovered a few years ago and a lot of doctors even peds do not know enough about the condition. I tell as many people as I can if the symtoms sound familiar as I know from experience that having a proper diagnosis can make a big difference and helps with your own understanding etc.

Thanks oddjob,but she does not present with any of the symptoms of MD,she has good muscle tone,she doesn't have GDD & she has had chromosome bloods,which have come back clear.
Phoenix,my dd & your ds's problems sound very similar,don't they??
How does he go on at school?Nursery for dd is worrying me,hoping we get the right one,hoping she gets the most assistance she can,you know the things.At the moment she does not see that she is any different from other children,but I think that will start to become obvious when she starts

Phoenix,just to add have checked out verbal/oral dyspraxia & it sounds very much like dd.I was rather ignorant about dyspraxia I'm afraid,so took some time to have a good look at it all,so am a bit more in the know now,thanks!!
Have also checked out ican website.
So thanks again for all your help & info,I really appreciate it

Hi glad it helped it's was just way she sounded like ds made bells riing

nursery ds was fine at he got 1-1 support but he pretty much did own thing and hogged the computer

but term at ms was when he became more aware watching other kids run around ds would just stay on the decking play on his own . Same in class room ds was becoming very isolated and used withdraw from other dc

yet at home with dd so differnt .Think lot was to do with the school and lack of training for his teacher and lsa heart in right place but pratical skills zilch.no idear what to do with a bright child who was non verbal with pd that prevented him doing. Things

am hoping he gets speech unit as main need but waiting on going back to panel as ds needs extra funding on top of unit .