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Anyone with a child with a cleft lip?

(12 Posts)
angelcake99 Wed 12-Oct-05 20:35:39

My son is now 9 months, he was born with a cleft lip and gum (but not palate). He had his opperation to correct the lip when he was only a few weeks old and is a healthy happy boy.
But as he gets older i am becoming concerned about any infections or illnesses that he could pick up, the cleft lip team have not managed to visit him since his birth which i find shocking. Is he more likely to get ear infections and such, what are your experiences with Gp's and the cleft lip team?

staceym11 Wed 12-Oct-05 20:41:10

sorry no experience but just letting you know no ones ignoring you and im sure someone who can help will come along soon, hope your bouncing boy carries on being a happy chappy!!! ((hug))

angelcake99 Wed 12-Oct-05 21:04:38

Thanks Stacey m, Im just dissapointed with the cleft lip team, who were brilliant at first but now dannot seem to get their act together to come and visit Ds. I could go on.. lol

staceym11 Wed 12-Oct-05 21:07:28

hospital teams never really seem to get it right do they? lol hope it all turns out ok, maybe try phoning them (i know you prob already have) if something has gone wrong with the computers or something they may not know they have to visit (prob worst case but you never know)

Hulababy Wed 12-Oct-05 21:23:34

Can't help with current working and cleft lip team, etc.

But my brother (now 30yo) was born with a hare lip and cleft palate. In those days he had to have several ops, and one big op in his late teens/early 20s. He does have some ear problems, and doesn't have perfect hearing in one ear - I know he failed the medical for the navy because of it. It became perforated after a nasty ear infection. IIRR he did have more ear infectiosn than I did when growing up, but not sure if that was related to his cleft lip of now.

He has generally always been pretty well though and I certianly don't remember him being more ill than me or my sister when we were children.

RachD Wed 12-Oct-05 21:31:34

S-I-L, has son 16 mths with cleft palate.
Team should be taking more care of you - chase this up.
Apparently, hearing is often affected and grommits are quite common.

melissasmummy Wed 02-Nov-05 15:15:27

Hi, I know this is quite an old post but I was born 32 years ago with a cleft lip.

I haven't had any infections or illness in association with it. No ear probs etc.

The only problem I had was dental. This was only in the form of a supernummary (extra) tooth.

Have you tried CLAPA? Cleft lip & palate association.

The head office number is 0207 431 0033

email : clapa@cwcom.net

website : clapa.mcmail.com.

They have regional offices and I am sure they will give you the relevant details of your local one.

Don't much remember my experiences with GP etc, only that I collected all my notes a few years ago & I was very well looked after, from these notes!

Can I ask where your son had his op?

Please feel free to ask any questions & I will be happy to answer if I can. (am a qualified dental nurse too, so may be able to advise on dental grounds too)

Good Luck

melissasmummy Wed 02-Nov-05 22:21:20

bump for angelcake99

angelcake99 Tue 15-Nov-05 15:39:34

Hi MM! Sorry i havent responded earlier! Thanks for your advice. My son had his opp at Notts hopsital. I am very pleased with the result, it was just that i had som much support i gave birth that i was surprised when no cleft lip nurses came to see DS afterwards. He is now 10 months old and has just had a visit from a speech therapist. As far as i am aware i will have no further contact from them until he is due for his opp to correct the ridge in his gum. I have looked on the CLAPPA web site and find them very informative. Thanks everyone for your advice! Thanks MM! I may come back to you if i have any further questions.

melissasmummy Wed 16-Nov-05 14:52:28

angelcake, glad to have helped. You can ring clapa too for leaflets & stuff. They do a magazine 4 times a year, but your DS will be too small to appriciate it yet, but it may be good for you.

Please do contact me at anytime for advice, chats etc. Glad that you are pleased with his op results, I only had to have 2 & alot of people don't notice! But, unfortunately, I have seen some who weren't so lucky!

All the best xx

claireee Fri 18-Jul-08 20:20:52

HI THERE, I UNDERSTAND THAT THIS IS AN OLD POST. MY SON WAS BORN IN DEC 2005 WITH A CLEFT LIP AND PALATE. HE HAS JUST UNDERGONE HIS FOURTH OPERATION. IT HAS BEEN THE HARDEST PERIOD OF MY LIFE...

Boboma Fri 18-Jul-08 21:19:39

Hi there, My dd has a repaired cleft palate and we have been through a tough year with NG tube feeding for 6 mths and failure to thrive...and the op. I just thought that I'd say hi and let you know that there is a brilliant parents forum for CL&P: look here which I have found to be a great support. Hope to hear from you there.

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