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Old 20 Aug 20, 10:41 AM  
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Floridatilly
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Lip & cheek swelling

My youngest is 7. From a a very early age he has suffered with swollen lips & cheeks And rash/redness around his mounth. Swelling from the inside, burning sensation in side his mouth. After constant doctors appointments were the doctors scratch their heads he was sent to a specialist at Manchester children’s hospital.
At aged 3 he was finally diagnosed with:
One under developed saliva gland
One totally non working saliva gland. Causing sensitivity to spicy / pepper etc
Allergies to all fruit & root veg
Low iron

So he can only eat very bland food or it burns his mouth.
We check everything he eats etc

For the past couple of weeks his lips are grossly swollen again and one side of his cheek. Took him to the doctors who requested bloods for iron and given antihistamines. Which he takes daily anyway for his hayfever 🤷 But prescribed two different ones and told to take both.
Blood tests came back normal. Antihistamines are not working. He looks like he has done ten rounds with Mike Tyson!

Doctors are now scratching their heads again and have no idea what it is. But not concerned because his tongue is not swollen therefore no threat to breathing.

Where do we go from here? We have been told to mention it the next time he sees his specialist which is 9 months away!
His mouth is sore and swollen. No ulcers or blemishes inside his mouth but the inside of his lips & cheeks are ballooned out and distorting his features.

I am going to ask to see a different doctor (waiting for call) but I am wondering/hoping someone has any similar experiences ?
Thank you
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Old 20 Aug 20, 11:28 AM  
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ERICSMUM
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This is a ‘wild card’ but might be worthwhile looking for a specialist through this website (even if you don’t live anywhere near)

ouh.nhs.uk/omd/oral-and-...-medicine.aspx
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Old 20 Aug 20, 11:39 AM  
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EssexSue
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Could you ask your specialist to see you sooner? They usually will if there's a problem. Maybe ring his/her secretary?
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Old 20 Aug 20, 11:45 AM  
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disney332
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There are various types of anti histamine in respect of the base drug used

I would try him on all of them to see if you get a good reaction

Worth a try

Disney332

Edit - Not at the same time of course
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Edited at 11:46 AM.
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Old 20 Aug 20, 11:46 AM  
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rhyger
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My lips used to swell badly, a proper trout pout, and inside of mouth really red and sore. I worked out I was allergic to sensodyne toothpaste and also toothpastes with stripes - no idea the specific chemical but i only use the same toothpaste now and am really careful. Its so hard, i couldn't eat or drink and very embarrassing so i hope you can find a solution
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Old 20 Aug 20, 01:39 PM  
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Floridatilly
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He usually has very small lips as you can see bellow. Rang his specialist PA who said they are currently 6 month’s behind so can not fit him him. If his tongue swells then take him to A&E
He can only use baby toothpaste anyway (correct flouride). We have changed nothing, he only drinks milk or water.
I am still waiting for another doctor to ring me back.
Its so sore he can hardly talk

Normal lips


Swollen lips

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Old 20 Aug 20, 01:44 PM  
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Floridatilly
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Originally Posted by ERICSMUM View Post
This is a ‘wild card’ but might be worthwhile looking for a specialist through this website (even if you don’t live anywhere near)

ouh.nhs.uk/omd/oral-and-...-medicine.aspx
Thank you so much for this! I am going to show his doctor this and see if we can organise something. Even if we have to pay to go private.

The poor lads diet consists of meat, plain pasta, fish.
Vanilla ice cream, biscuits and chocolate.
Bread & eggs make him feel sick, although he can eat things that have eggs in them like biscuits so not allergic.
We are at our wits end with food to be honest.
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Old 20 Aug 20, 02:18 PM  
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THE WIZARD
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I have something called Geographic Tongue (diagnosed) when it flares up the inside of my mouth feels like it is on fire & swollen and also my lips (tho they dont swell that you can see on the outside). Called Geographic tongue as when its bad it looks like a map & area's look like they are bleeding they are that red. I've had it for years & my sister suffers from it as well but not quite as bad as me. It was suggested I might be allergic to fluoride & about 2 years ago my sister and I both swapped to a non fluoride toothpaste (I use AloeDent available at Waitrose) I very rarely get a flare up now & its usually spicy food that does it. Every so often i do use a fluoride mouth rinse tho for my teeth sake.
Anything is worth a try. I do feel for your lad tho, its not nice what ever is causing it.
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Old 20 Aug 20, 02:34 PM  
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Michyloulou
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Sorry, I’ve not got any advice, but bless your little lad - it must be so uncomfortable for him. Hope he gets some relief soon from whatever is causing it.
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Old 20 Aug 20, 02:41 PM  
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Floridatilly
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Originally Posted by THE WIZARD View Post
I have something called Geographic Tongue (diagnosed) when it flares up the inside of my mouth feels like it is on fire & swollen and also my lips (tho they dont swell that you can see on the outside). Called Geographic tongue as when its bad it looks like a map & area's look like they are bleeding they are that red. I've had it for years & my sister suffers from it as well but not quite as bad as me. It was suggested I might be allergic to fluoride & about 2 years ago my sister and I both swapped to a non fluoride toothpaste (I use AloeDent available at Waitrose) I very rarely get a flare up now & its usually spicy food that does it. Every so often i do use a fluoride mouth rinse tho for my teeth sake.
Anything is worth a try. I do feel for your lad tho, its not nice what ever is causing it.
His tongue is fine luckily. His teeth & gums are healthy so its not those either.
He can only use baby toothpaste as even the 6+ toothpaste burns his mouth.
He also can not have any spicy food. Even the pepper in sausages burn his mouth.

It is just the inside of his lips and cheeks which are very swollen.
X x x
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