Baby May Have Dwarfism

Post new topic Reply to topic
fletchie
Senior Member
Senior Member
Joined: 16 Nov 2009
Posts: 195
Reply with quote Back to top
Posted: Fri Aug 05, 2011 1:47 pm 
Post subject: Baby May Have Dwarfism
Hi,

Im in need of a some advice and some positive words.

At 2 days old my baby was diagnosed with Biliteral Hip Dysplaysia. The 1st round of treatment near enough cured her right hip but is still needing treatment for her left hip.
At last surgery her consultant noticed her arms were shorter than normal. She is due for more surgery next month and ive just had her consultant on the phone saying that going by last x-rays she THINKS she may have a form of dwarfism. But will have more x-rays next month to confirm or deny it for sure.
Anybody out there had experience out there or recommended any good website.
simmysim
AskBaby Star
AskBaby Star
Joined: 07 Apr 2010
Posts: 3877
Reply with quote Back to top
Posted: Fri Aug 05, 2011 5:38 pm 
Post subject:
Hey Smile my Kieran us due to have tests soon for hypochondroplasia, I have found some amazon support on the net, pm me if u want the links, most of them are in America, but they have been amazing even through this not knowin stage Smile x
LauraG
AskBaby Legend
AskBaby Legend
Joined: 22 May 2008
Posts: 26846
Reply with quote Back to top
Posted: Sat Aug 06, 2011 3:18 pm 
Post subject:
hi fletchie,

i remember your little one having hip dysplasia and then remeber ur post about her arms being shorter than normal

how old is she? and wots her length?

its awful not knowing and probs going to be sometime till the tests are done and u have the results. so i know its difficult but its best to not think about it just yet as u start thinking about the what ifs and it will drive you crazy.
_________________


fletchie
Senior Member
Senior Member
Joined: 16 Nov 2009
Posts: 195
Reply with quote Back to top
Posted: Sat Aug 06, 2011 5:54 pm 
Post subject:
Hi,

She hasnt been measured for her length since she was born! so dont know what her current length is. She will be 11 months on the the 10th. If you compare her to a child she knows quite well and there is only 10 days between them (my lil one is older) there is an ovbious difference, he's quite slim build, she looks like a wrestler!!!

I know u shouldnt think about it, but i cant help it. I am one of these annoying people that likes to plan things in advance, ie make lists etc!!!!!

Ive already got my lil one a special chair for her condition, clothes etc.

I would like to know the name of this condition she MAY have, so i could research it and find out more about it. I know its not definate she has it, but id like to be prepared you know?
LauraG
AskBaby Legend
AskBaby Legend
Joined: 22 May 2008
Posts: 26846
Reply with quote Back to top
Posted: Sat Aug 06, 2011 8:28 pm 
Post subject:
i know exactly how u feel i am the same like 2 plan ahead.

My lo has many symptoms but nt diagnosed wiv anything as of yet.
_________________


fletchie
Senior Member
Senior Member
Joined: 16 Nov 2009
Posts: 195
Reply with quote Back to top
Posted: Mon Aug 08, 2011 7:41 pm 
Post subject:
How old is your lil one?

Just feel so sorry for her, how much more has she got to go thru?

Its the not knowing thats killing us
LauraG
AskBaby Legend
AskBaby Legend
Joined: 22 May 2008
Posts: 26846
Reply with quote Back to top
Posted: Tue Aug 09, 2011 7:43 am 
Post subject:
My lo is 21 months. Ur little girl is younger isnt she?

At least she is going thru this whilst she is young.

The nt knowinjg is defintly the worst part. We gt the diagnosis of valgus foot and low muscle tone and nw shes getting the right help. they think she has hearing loss which cud b affecting her speech and its the nt knowing thats getting 2 me as we hav 2 wait 4 a retest.

At the moment im trying 2 focus on wot she can do rather than wot she cant do and trying 2 nt listen to others.

I really hope the doctors do the tests ur daughter needs asap so that u get answers.

Btw loolahoop and another mum are waiting 4 dwarfism tests 2 b dun on their sons so may b helpful talking 2 them.
_________________


AngelDelight
Senior Member
Senior Member
Joined: 05 Apr 2009
Posts: 406
Reply with quote Back to top
Posted: Mon Aug 15, 2011 3:51 pm 
Post subject:
Hi

Just thought I would post to support you and to say I know how it feels in the not knowing..! Sad My son is coming up to 19 months, and is very underweight, but eats well. They can't work out why, he has undergone so many tests, which some have come back normal. The genetists still thinks he has a genetic disorder but not sure what type and like you would love to have a name so I can research. We are waiting for results back as my and the dad had to be tested now for abnormal chromosones and he has a mri scan next week. Mums out there with normal kids dont really how hard it is facing the uncertaintcy it really is tough. So I understand how you all feel. Best of luck x
_________________


Display posts from previous:   
Post new topic   Reply to topic    AskBaby Talk -> Special Needs All times are GMT
Page 1 of 1

 
Jump to:  

Community

Popular