Somebody might know :) - Mothering Forums

Forum Jump: 
Thread Tools
#1 of 4 Old 02-06-2013, 08:08 AM - Thread Starter
tamsin123's Avatar
Join Date: Feb 2013
Location: England
Posts: 1
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hello I am brand new to this forum chat stuff, I have joined to see if any body has a child with the same symptoms as my child, I am from England and I have a 14 month old daughter who has some sort of undiagnosed condition .... She cannot suck, swallow, cough, or gag she does not jump to loud noises ( but can hear ) she does not flinch and has stiff arms and legs but is able to move them herself. I went to see a neuromuscular specialist and she said my child has the strangest cry she has seen she does not use the 'normal' muscles to cry with, however she does not cry out loud like a 'normal' child would, she screws up her face and sort of whimpers she can smile but its not a full cheesy grin its very slight. she has a tracheostomy to keep her air way safe as she constantly get pneumonias from free aspiration and is completely fed through gastro button. there is no obvious cause for her condition i.e starved of oxygen at birth Ect my pregnancy and her birth was completely normal. She has a number of test including an MRI scan EEG nerve conduction test blood test muscle and skin biopsy and is still having genetic testing however they have all come back as 'normal' (still waiting for genetic results) she has learnt to roll over and has now just learnt to weight bare on her legs can copy some actions such as high five and screws up her face to give 'kisses' so she is developing but very slowly I'm just feeling really confused as to y nobody here knows what this is so I am hoping there is somebody out there that has similar symptoms and has been diagnosed or can give me ideas that I can ask my consultant to try out ??? Would be really great full if somebody could reply thank u so much xxx
tamsin123 is offline  
#2 of 4 Old 02-10-2013, 06:20 AM
DanishMom's Avatar
Join Date: Feb 2002
Location: Denmark
Posts: 943
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
I'm sorry mama. I have no knowledge or experience whatsoever. I hope someone can help you. The uncertaincy must be tough to deal with. I wish you both the best.
DanishMom is offline  
#3 of 4 Old 02-28-2013, 07:35 AM
purplepaisleymama's Avatar
Join Date: Jan 2007
Posts: 522
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Hi Mama.... 
I don't have any real insight for you, but I was thinking that you might look into tongue tie aas a cause of the weird muscle use for crying and daughter had a tongue tie ( posterior) and it was the cause of her difficulty with swallowing and aspiration as well as her difficulties with speech. I am sorry that you haven't found any other families who are experienced in what your family is dealing with. There are a few support groups through Orphan net I think, though I am not really familiar with them....we researched extensively with our daughter but have not yet found what we are dealing with. Hugs!!! 


laura, dh Brian, ds Rory 14, dd Ellie 13, ds Caelan 11, ds Seamus 9, ds Finn 7 and Penelope 2 !!!!

purplepaisleymama is offline  
#4 of 4 Old 02-28-2013, 07:37 PM
AnneS's Avatar
Join Date: Feb 2013
Posts: 3
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Hi. I'm sorry I have not experienced what you are going through. A couple things you said made me think of a condition called Cri Du Chat. I have heard about and met people online that have children with it but never met them personally. Kids with it typically have difficulty swallowing and sucking, and have a really strange cry. It may not be it at all. Just thought I'd mention it.

AnneS is offline  

Quick Reply
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Please enter a password for your user account. Note that passwords are case-sensitive.
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:


Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.

User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page

Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off