(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 )
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 linkhttp://rheumatology.oxfordjournals.org/content/40/5/485.full
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 hip
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
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.
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 referral
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.
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 tia