Posted: Fri Aug 05, 2011 1:47 pm
Post subject: Baby May Have Dwarfism
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.
Posted: Sat Aug 06, 2011 3:18 pm
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.
Posted: Sat Aug 06, 2011 5:54 pm
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?
Posted: Tue Aug 09, 2011 7:43 am
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.
Posted: Mon Aug 15, 2011 3:51 pm
Just thought I would post to support you and to say I know how it feels in the not knowing..! 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