The (not so old) Crocks Cafe -Part 2

Jojo_the_Tightfisted

Just got copy letters through from DD's paediatrician.

Seems strange reading referrals saying 'we are investigating this child for Marfan's' and it being MY child. (used to work in a hospital and dealt with other's people's referrals all the time).

Especially when I read the 'clinical signs suggestive' as they sound like a tick box for the condition. Even though I know that other conditions have similar features.

List of things so far

EEG tomorrow

Orthodontist in hospital Thursday

ECG day before her birthday

Opthalmology referral

Geneticist referral

Orthopaedics referral

Follow up scheduled for end of September but will be brought forward if any results are less than normal.




Her father won't believe it and has stopped paying maintenance - not sure if the two are linked, but it is feasible that he has done this to punish me for offending his sensibilities by suggesting that he could be imperfect by proxy. Not going to tell him anything in advance ever again. Think he has just lost any moral right (has no legal right anyway) to be informed.

Oh well, it isn't as though he has ever been capable of parenting, so it's all on my own as usual.


And I still feel ill.

Trialia

That actually reminds me - wanted to post this link for my fellow EDSers in the thread. Pretty fascinating stuff ... and man, the number of tick-boxes it's got me checking...heh.

http://www.reumatologia-dr-bravo.cl/whentosuspect/Whentosuspect.htm

Jojo_the_Tightfisted

Interesting to see the extra things on my list that go onto the hypermobility/EDSIII - I had a ganglion removed from my wrist when I was a teenager and it still kept coming back (touch wood it's been gone for about 5 years now and isn't coming back), plus the wonky earlobe I have on my left - didn't know about those at all.

Elle7

I'm sorry for butting in, it seems so rude, but I just can't take anything in at the moment.
I've just got a letter through about a psychologist's appointment. I'm worrying quite a bit...has anyone been to one?

Sorry again....

E x

Jojo_the_Tightfisted

Nah, no probs, Elle. Sorry I can't help you, though, as I've never seen a psychologist. But you should be able to ask questions about how you can get help with your housing situation as they might know who to refer you on to for support - a Social Worker, perhaps?

sunnyone

Jojo_the_Tightfisted wrote: »

Interesting to see the extra things on my list that go onto the hypermobility/EDSIII - I had a ganglion removed from my wrist when I was a teenager and it still kept coming back (touch wood it's been gone for about 5 years now and isn't coming back), plus the wonky earlobe I have on my left - didn't know about those at all.

Same here I have 99% of the symptoms in that link

I have a ganglion on my right hand, it gets very sore sometimes but I refuse to have it removed because me and ops dont get on, people think thats an odd thing to say because Ive had so many but thats how I know that we dont get on!

SingleSue

I have a ganglion on my right wrist! That list is scary as I meet most of the criteria too......

Careful_with_that_Axe

How strange, I have almost the opposite of Hypermobility - my joints don't move very well at all, yet I can tick a fair number of those, including the ganglion on wrist. It seems to impinge on nerves sometimes, but people seem very unwilling to remove it; I suspect because I bleed very freely and my scars tend to "go" keloid. Rheumi seems to take a "if it ain't broke" stance with me as messing about with me seems to set off all sorts of woes.

Had another chest Xray and still residue of pneumonia left in one of my lungs, so ab's (again and again and again). I asked for a referral to physio to try to get the residue shifted, but he wasn't sure if he could refer for this purpose.

Careful_with_that_Axe

p.s. JoJo haven't been able to post parcel to you yet as I ran out of money, but DLA should go in tomorrow, so I'll confirm to you tomorrow that it's on its way. Sorry :o

Trialia

CWTA - not everyone with Ehlers-Danlos syndrome has hypermobility as a major symptom, funnily enough. It's the most common, but there are odd instances of EDS without it.

Sue - well, we already know YOU are, even if you won't admit to it. *snugs*

sunnyone - me, too.