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HMS and Pinguecula

(17 Posts)
FriggFRIGG Mon 08-Apr-13 17:24:09

(This may be in the wrong place,I wasn't sure if I should post here or in childrens health,sorry.)

2.6yr old DS has HMS, (as do I) he is under a paed at the moment and due to see a paediatric rheumatologist and a paediatric gastroenterologist (for stomach problems i think may be related to the hms)next month.

On Friday the corner of one eye went red and a small white/yellowish spot appeared,we had it checked out on Saturday evening at the local minor injuries department,they checked it over and found no foreign object or scratch.
Today we saw the GP,who says it is Pinguecula,he had no idea why a child of DS age would have one,and told us it was a harmless degenerative condition normally found in people of middle age who have had a lot of exposure to sun and wind. And to keep an eye on it.

Once home I had a quick google to find it is actually caused by a degenerative COLLAGEN fibre,which leads me to think it's linked to the HMS.
Which would explain why it's happened to him and so young.

Does it sound likely?
Do you think we should be concerned about it considering his age?
Or will it just go away as the GP predicted?
Anyone have any experiance in this?

(Thanks if you've read this far btw...I babble when nervous wink )

CouthySaysEatChoccyEggs Mon 08-Apr-13 20:18:07

If it's collagen related, then I (as a fellow HMS sufferer, and with HMS DC's) would assume that there would be a connection to the HMS (though I've never heard of this condition).

Might be worth asking the Rheumy?

CouthySaysEatChoccyEggs Mon 08-Apr-13 20:19:26

Another quick question - is the paediatric rheumatologist seeing your DS FOR the HMS?

It's just I have 3 DC's dxd with HMS, and none have ever been referred to a rheumatologist, despite the severity of DS2's HMS.

Ineedmorepatience Mon 08-Apr-13 20:27:40

I have just been looking at an article about HMS couthy, my Dd3 has also never been seen by a rheumatologist but I am thinking she should be. there is a history of immune system disorders in my close family. The article suggested that HMS should be taken more seriously. I will try to link

I am also worried about how often she falls.
She is better with her orthotics but today even in boots she fell quite badly and the other day she fell and hurt her hipsad

Ineedmorepatience Mon 08-Apr-13 20:28:46

Oops nearly blush

CouthySaysEatChoccyEggs Mon 08-Apr-13 20:30:46

Cheers. Might take that to show the bloody SW!! (Whole other thread...)

Ineedmorepatience Mon 08-Apr-13 20:36:11

I know I read it, feel for you but couldnt really add anything helpfullsad

There are some other articles linked on the page too.

FriggFRIGG Mon 08-Apr-13 20:41:12

DS has been referred to a rhuemy for the HMS,yes.

We seem to have stumbled apon a brilliant paediatrician.

He is 2.6yrs old and was DX about a year ago,his HMS is pretty bad but I have certainly heard of worse. We have a strong history of HMS in the family and also Marfans syndrome (which he does not have) he also has a Speech delay and stomach issues (he wakes every night screaming,is a very picky eater and sometimes wont eat for days) so I'm not sure if all this contributed to his referral,or my pushyness....or just the general wonderfulness of his paed.

I think he needs orthotics,I figured the rhuemy would be able to get these for him? Who arranged them for your DD Ineed ?

I certainly think HMS needs to be taken more seriously,any medical professional who has disputed this in my presence has been shot down fairly fast blush

FriggFRIGG Mon 08-Apr-13 20:45:02

Also I took in an article connecting his stomach symptoms and HMS,and that's when he was referred.
His Paed wanted the rhuemy to look at it too and see if he thought I was correct as our general Paed admitted it looked likely,but she couldn't tell for sure.

Ineedmorepatience Mon 08-Apr-13 20:48:39

Physio referred her to podiatry, they issued her first pair but couldnt issue them again as the HA had stopped using the manufacturer for adult sizes [she is a 5]. so when she needed new ones I bought them direct from the manufacturer and the podiatrist checked them and said they are identicle to the children's ones and that it was fine for me to continue to buy them direct if I was happy to do so. I decided that as they are the best for Dd3 I would continue to do this.

So now the podiatrist has discharged her too. I feel really bad that she is not being checked by anyone and her joints could give her trouble later on. Her posture is awful and she is seriously floppy.

Ho hum, back to the GP for me for yet another referralhmm

FriggFRIGG Mon 08-Apr-13 20:58:24

Ahh,DS hasn't had a physio yet. I'll ask the rhuemy about that and the shoes/orthotics,thanks.

How old is your DD? I would go back for another referral yes.
I hate having HMS in the family mainly because you have to fight so hard for everything,and face so many professionals who either have never heard of it or have such limited knowledge of the condition but think they know it all they end up giving terrible and/or incredibly outdated advice.

Ineedmorepatience Mon 08-Apr-13 21:45:47

Dd3 is 10, she was only diagnosed when she was 8 by an OT who assessed the top half of her body and then recommended physio for the restconfused

FriggFRIGG Mon 08-Apr-13 22:06:46


CouthySaysEatChoccyEggs Mon 08-Apr-13 22:07:15

Paed or physio refer to orthotics here. Sent by Paed for DS3, Physio for DS2...

CouthySaysEatChoccyEggs Mon 08-Apr-13 22:09:36

DD dxd at 2yo, DS2 dxd at just 7mo (he was still as floppy as a newborn & couldn't hold his head up though, he is the most severely affected of all of us), DS3 dxd at 22/23 mo.

babyjane67 Tue 09-Apr-13 16:37:57

hi all
sorry for hijacking this
ineedmorepatience how much were the orthotic shoes to buy?
im asking as my dd starts school this yr&will need school shoes&pe trainers&i think we only get one pair free.will ask at orthotics when we see them on3rd may but as youve already bought yrs thought id ask

CouthySaysEatChoccyEggs Wed 10-Apr-13 00:11:02

If you already have orthotic inserts, Kickers boots are EXCELLENT. Even my DC's Orthotist recommends them.

The only issue is that from a size 3 upwards, they have laces.

I have found some Ricosta shoes that are as supportive, with Velcro, in a size 3+.

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