Finally we are getting somewhere

It's been a month since my last vent, and i feel like i shouldn't leave it so long. Not that i want to vent now generally things are going ok. We are finally getting somewhere with all these appointments!

Though I'm still not happy with how the physio treats us i do feel this will slightly change when we go to see her next. We had a Rheumatolgy appointment today for our eldest and in minutes it was confirmed she had joint hypermobility syndrome and that yes her knees are lax and the wouldn't be doing all the freaking things they do if they weren't lax!!

As you can see here, knees are not suppose to be like that!! 

And here her elbow is not in a very natural position ( i apologise for the silly face!  but the ice cream was a "safe" treat! )

So we were told today that her ankles and knees were hypermobile!!  they shouldn't be moving as much as they are well thank goodness that someone has finally sat down and listened instead of telling me its bloody growing pains!! her elbows yes do flex a bit more then they should but its her lower half we are talking about. Now this is probably something she is going to have to deal with till she is atleast 18 ( fingers crossed)  Poor love on the way home from the hospital asked me if it is something she can deal with... see sometimes i think all this is too much for a 6 yr old to deal with!! 

Dermatologist is suppose to be referring us on for some family counselling but heard nothing just yet ( and i will be checking up on this) and i know it sounds extreme but i think we could really use it! I can't cope with the mood swings, her going from being a lovely caring little girl to being a tired, whining, angry person. It's extreme! 

Eczema hasn't been terrible, i think it has something to do with the half decent weather we have been having. Don't get me wrong its there, its sore its on her neck back, chest , arms and knees but its "ok"  both the kids are getting tans!  ( and even me.. yes me, miss blue has colour!!)

We go camping in just over two weeks and i can't wait to have some time away. We are going to Norfolk! its been 10 years since we were last there ( ... that is a scary thought in itself!!) And look forward to it. I just hope madams hayfever/allergies etc don't kick off and that we don't have too much pain whilst we are out. 

Two weeks till holiday, two weeks till summer holidays and my baby going up into year 2!! Won't be long before the youngest is going to nursery either. where is time going?

Appointment day

I had been apprehensive about our appointment at our local hospital for some time.  This is for our eldest with all her problems! Previously when we have been we've not see the dr we were meant to, or I have been looked at like I had two heads for merely suggesting that my daughter might have a potato intolerance! ( it is a real thing go look it up!) that and we've been waiting 9 months to see this Dr! as our appointments keep being cancelled, the last time we saw her was Febuary last year, as last July we saw another of her collegues. Any wonder why I wanted a referral to Manchester Childrens hospital regarding her joints etc.

So yesterday, our appointment was at 9:30... we didn't get seen till 10:30 and didn't leave till 12!  When we got in, it was like it was a whole different woman! she listened, as soon as i said that she had a reaction to walnuts she was straight on suggesting skin prick tests for other nuts. So glad now i held off the anti histamines for a week to do so!   She looked at her knees when i said they are far more flexible then they should be ( and demonstrated too), her spine and gait are fine but her knees are more flexible, so been told not to let her do silly things and we had bloods taken to check it isn't anything more sinister, check vit d levels etc.  and we are being referred to a physio! finally something constructive! 

Her skin prick tests for nuts ( and dust whilst we were at it!) came up with pecans and a smaller reaction for walnuts ( i was really surprised as the walnuts was the one she reacted to out of the cereal!)  So now whilst out and about its a blanket, no nuts, we don't have to avoid the may contains but personally  on cereal, chocolate and biscuits i will as there is a higher chance of cross contamination there. She was itching at the cashew one as well but nothing came up there and nothing for dust.  We also have a jext pen ( like a epi pen)   due to her having asthma and a food allergy, had training whilst up there and advice about nuts .. which i actually looked up after her reaction. So i know what i'm doing.  

Hated the fact the nurse doing the spt was going on about dust and environment at home etc trying to tell us how to deal with the eczema, i'm sorry but my child is 6 1/2 years old, I know how to deal  as much as i can, with her eczema! also she didn't react to dust so it isn't that!   I still change her bedding often and keep toys to a minimum!  She did bring up a point about enviro tests and i said i would be interested in them. But bringing this up with the dr she said we'll have to wait for her eczema to calm down a little and to her hay fever and just to  monitor things. also poor love did have alot done yesterday! there was no more room on either arm!  

Thank fully her full back eczema etc isn't infected and just looks like a allergic reaction to pollen or something!  Just its a bit out of control. 

I think it was alot to take in, and felt a bit lost when i got home, i appreciate alot of people won't know what we are going through, and can't begin to understand, the severe eczema, allergies etc and then her joint issues on top. I felt drained,  and exhausted! Some might just say, well its only a appointment, but we were there for 2 1/2 hours, with a toddler in tow as well as a hyper 6 yr old that then needed tests doing to her and got upset  and frightened. ( though she did very well!) it is a lot to deal with and handle the fact she will more then likely never  grow out of her nut allergy!  She was also very itchy and its hard when there are so many people around, whilst waiting for the SPT results i had to hold her hands as she was itching at the spots! 

We had a lot of answers yesterday, and although we don't know the causes of her eczema yet, we are getting somewhere with everything else and i was listened to, which always helps. We have to take each day as it comes and be prepared. And hope perhaps one day that atleast one of her issues will settle down.