I am looking for information on a defect called cricopharyngeal dysfunction. I have a newborn baby recently diagnosed with this. He also has multiple heart defects and had surgery last week. He has been on the ventilator off and on for 11 days now, because he can't swallow and makes it too hard to breathe on his own. I have been all over the internet looking for information and treatments for babies and keep hitting dead ends. Does anyone have experience or heard of this dysfunction?
I have heard of this dysfunction as I'm a speech pathologist who works with adults who have swallowing disorders in addition to children with language disorders. I know of an excellent speech pathologist who you may try to contact by googling. Her name is Joan Arvedson. She is very experienced and educates many across the country in treating pediatric patients with swallowing difficulties.
What I was able to find out it appears that esphogus surgery is what is recommended, however all the examples were for older people and there was no recommendation for infants. I am so sorry. I don't know if you could start calling around to some of the leading medical institutes such as Duke, John Hopkins, etc... and ask them if they have heard of it and if they have treatment options and can give you more information. There has to be someone out there who can help you, but finding out where they are I am sure if frustrating. I do wish you the best and hope that you newest edition can get the help he needs and come home to you and your family soon. My prayers are definitely with your family at this time.
Chanin,
My name is K.. I am a local Firefighter/EMT-B. I just read your situation. Let me do some research on this for you and I will let you know what I can find out for you. I hope that your son makes a speedy recovery and wish you and your family the best during this trying time. You and your family will be in my thoughts.
If you want to contact me personally please feel free to email me at ____@____.com
K.
i will try to ask some of the docs at work. but my prayers are with you.
I don't know anything about your trouble with your baby. I do know about having a sick baby and how hard it can be. I found a link you might have already been there: http://www.emedicine.com/ent/topic602.htm
Hope this can help you, and if you ever need talk I'm here.
M. Raines :)
I know you said you'd looked all over the internet already, but from what I can tell the USC School of Medicine (that's University of Southern California, the "other" USC!) has some doctors who specialize in this condition. It couldn't hurt to call or email them and ask for advice.
http://www.uscuh.com/CWSContent/uscuh/ourServices/medical...
I have never heard of this dysfunction until you mentioned it. But looking on the net, I have found very little about it. I'm sorry. I know how frustrating that can be. My 8 yr old son has a very rare chromosome abnormality and to this day I can find very little about it on line. It's more or less a learn as you go process. I did find an article about your son's condition and I will share the link with you. I don't know how much help it will offer you. But as someone mentioned previously surgery is recommended to correct the problem. However, I am uncertain as to whether or not they will perform the procedure on a new born.
http://www.usc.edu/schools/medicine/departments/surgery/d...
You may want to check with the pediatric gastrointestinal specialist at UVA. The doctors there are wonderful and have seen my son regarding feeding problems as well(he has dysphagia and due to constant aspiration had to have a feeding tube placed). They may be able to help you find the information you seek and refer you to a speicalist in your state. Thier number is 1-800-251-3627. If you do call just as for the Pediatric GI clinic. I wish you and your son the best.
J.
I don't have any info for you. I just wanted to let you know that I am also here to listen. Good luck. You should post and let us know when your baby comes home:)
