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?

where do i start?

I want a ramble, a ramble to put all my thoughts down, some i can't as some  people won't want to read my rants about certain individuals and i'm not that sort of cow to be honest. i'll just be the one seething away behind people or closed doors and letting it all out later on in life to a counsellor!

I appreciate what we are going through with my daughter is not the end of the world and not as bad as some families/ people go through. With some people i think they must look at me like i am a paranoid mother or that i'm trying to make up excuses/ labeling my daughter.

No.

Severe eczema flares, asthma hick ups, allergy queries and daily pain, sleepless nights and a cranky 6 yr old that is acting like a 16 yr old is taking its toll. I want to scream. Personally if it was me in pain etc i would probably bottle it all up like i do with everything else. I will silently worry away else where or not want to pester people with my issues but even now i'm sitting here in tears as i feel that sometimes people just don't understand! Or that i'm doing something wrong. makes me feel like an awful parent, and i know i do my best but i'm not labeling my daughter or being paranoid.

She couldn't even manage a soft play centre for two hours,  without being in pain and tired and being grumpy which to be fair we all would be if we were in pain esp at 6. But it is so hard to handle. Tonight trying to get her to read for her home work was hard work because she was tired, but we get into this cycle of ok not tonight tomorrow and then it gets to Tuesday night with books back in on Wed and we are trying to catch up! No i don't force her homework. Just get tired of the same thing every week.

She scratches without going to ask for help. she doesn't go to her dad for help its all mummy!  complaining at me that she hasn't seen him but not going downstairs to see him as she is tired O_O

I don't even know what to say sometimes. I don't want to bore people with our troubles, but i'm struggling to cope the daily changes are exhausting we are never clear of anything and its hard to remember all the stuff we need.

I need a better routine to handle the crap!

Tired of waiting for appointments, tired of physio's looking at me and talking to me like i have three heads and like its all my fault she has these issues in the first place.

When people ask, how are things and are things ok? what can i say apart from yes? without going into the tirade of all this? no i'm not ok.

I think i need to get someone to come talk to us, or someone to talk to my daughter so that we can start digesting these things more easily, be able to talk to each other without shouting and getting cranky with each other.

I'm sorry but i needed to vent

Must learn to drive... now lets raid the money tree!!

On Tuesday we had a Doctors appoint at Manchester Royal children's hospital, and due to everyone i know  with a car working or busy, i had to travel by bus, not a big deal.. ( she says carefully) would have helped if i could find that elusive bus pass! but alas it is gone.  So we had 3 buses to take just to get us to the appointment. Laden with a pushchair, toddler and 6 year old, two lunches, stuff to keep them busy and my handbag oh and madams medicine bag !  How the push chair didn't tip over i'll never know, toddler in it or not! Though madam did carry her rucksack with medicine in it to help.  Anyway!  we left at something to 9 and got to the Childrens hospital at 10:45, obviously waiting for buses and walking are included in that,

The dr was running a hour late.. it i a good job the hospital is child orientated though mine spent most of the time eating their lunches. When we finally got called in,  the dr took all of two minutes to say he hadn't had the bloods from Wigan and couldn't access them, ask how madam was didn't bother to look at her and said well i'm referrering you on to rheumatology and thats bout it. Didn't even try to ring Wigan to check even though I said they were ready as I had asked the day before. ( though didn't know the answers to any)

All it seemed to be was that he was trying to get us in and out as quick as possible as we were one of the more moveable appointments. But seriously? practically two hours to get there and an hour waiting to get told he is passing the case on. A phone call could have told us that!!  A waste of a day out of school, a waste of money up there and a waste of time.  I asked if it could be joint hypermobilty and he said it looks like it but without a firm diagnosis he couldn't say, i asked if there was anything i could do as the day before she had been in agony just from playing on the park after school ( and not for long) and all i get told is painkillers.. well er duh!!! i'm doing that already. I felt so deflated and the fact that i had to then make the journey back home was just daunting. Thankfully the toddler fell asleep and was asleep for most of the way back so gave me time to get myself some lunch and a quick ice cream for madam as it was rather warm.. and guess who was wearing a jumper!! i really hope the referral comes through soon, I have since been told the blood results were satisfactory.. so er i assume her vitamin d levels are ok? will wait and see what the pediatrican says!

Just makes me realise i need to drive ( though i know parking had been hell at the hospital, not good when you have a child who can't go long distances) its just  the whole cost and i genuinely feel scared about learning to drive!  i feel my own problems will hold me back, silly i know but  its my issue.

Eczema still not good esp after a warm day yesterday at school madam came home a bit of a mess, think we might need to invest in a fan for her  in school but due to the age of the kids i feel it would just be messed around with.  its things like this and worries like this that make it seem so much bigger to deal with, its little things, things that no other parent even needs to worry about :(

nice holiday.. miracle money? time to plant the money tree it could really come in handy!!

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. 

Easter break!

Well the eldest broke up last Friday, and we haven't had any melt downs or tantrums yet seeing as it has been a week already! We haven't done a great deal, visited my sisters, watched dvd's and yesterday went to the park and had a naughty lunch of chippy chips! though the gravy was.. quite frank awful. ( not usually the case) the kids had fun running around and had a good time i think.

 I always worry about so much activity with my daughter due to her leg issues which i may think i've found a cause, though don't want to get hopes up of knowing. But all her symptoms link with joint hypermobility syndrome, now for some people this doesn't cause any issues at all people are just generally more flexible then others and then there are others who get pain or can't walk terribly far without it hurting, to the point where some are in wheel chairs ( which i do know of) Now she isn't wheel chair state of course, she can walk but will often start to say she is tired after a short time. I know most people will think this is a child being lazy but normal 6 year olds want to be off running around. not complaining they are hurting. This has sometimes in the past been called growing pains which i have been told before she has. ( sorry but no) these are not meant to swell and get hot and unable to move or touch her knee and now its affecting more then one joint. And JHMS normally causes pain at night, in the evening or after activity which happens to us!  Hospital appointment next week where well there is going to be a long list!! including allergy tests, her eczema and her legs. Don't ask me why we see the one dr for it all. Because it annoys the hell out of me!   Her eczema isn't great at the moment, we have gone back to basics with no preservitives in any of the creams and things we use.  She had two calm days last weekend and now? well her back and neck are not looking good and the crooks of her arms, arn't as bad as they have been but not brilliant. Going to trudge on though, least if they see how bad she they might not think i am lying or making it all up, I have also sent some pictures to DLA to try and help our case.  Unless you are in our shoes you have no idea what we have to  literally do every day!  But thats another post!!

This week i ordered another order from approved food and now have a huge lot of baking things to do lol and dumpling mix... yeah don't ask, i must have thought we were doing casaroles etc heh. Suppose we might have to, to use them up hah. Not much planned for today but the weekend sees us at the usual swimming etc, looking after a family member. Next week hubby is off  from Wednesday so least i have some back up when it comes to going to the hospital!

Allergy info madness!

Might not seem like a big thing to some people, but after Rhiannon's walnut reaction the other week we have been avoiding nuts and nut traces, even if her results came back as mild with possibly more and the others like hazelnut came back with nothing ( has come up with something in the past apparently) and peanuts were nothing. I am not convinced that she is going to be "invincible" here.  I am aware that we can't go forever avoiding the may contains, but my fear is as her first reaction wasn't pleasant or mild in any sense ( even if they might think so) I don't want to have to go that way again!

So que food label reading and making sure that  what she eats is safe, or as safe as can be. So far so good! We have been successful so far  in avoiding things and making sure she is eating generally everything she was before. She knows we have to becareful and it isn't so much of a wobble to be honest where as when we had to take her off Dairy and Wheat there was a huge wobble and upset.

Now cut to Tesco! those in the know will have seen the huge uproar there has been this last week as they have decided to put a "May contain nuts" on all of their food products!! this includes, legs of lamb, prepared carrots, juice, packs of ham you name it, its probably on it! They say its because of new guidelines coming in, in December of this year, we call BS! and say they can't be bothered checking their factories any more and making sure  these things are safe. It would mean myself and many other allergy people would be avoiding all of there products even just on the off chance, ( and i do assume most people would if they didn't want to risk reactions! )

We should be hearing more about this, this week as someone from the Nut allergy group has been in touch with a big boss about it and they are going to be looking into it all. As the advice on FB that people have been receiving is shocking!

In the mean time Rhiannon's eczema has calmed down alot and been a bit of our minds even if just for a day! makes a lovely change! only thing we have changed is the avoiding of nuts.. interesting thought there!

Roll out the red carpet...

Well not quite the red carpet, but for  a year now we have been waiting to see the results of the dvd we helped record  last July! And it is looking fantastic!   Everything you need to know when first stepping into the Eczema world is in there, lots of information and help in how to treat Eczema. This will help those coming into this blind and help the strain on the NHS even if just a little. As with the DVD there will be a pack of creams etc to start off with and see if it is a mild case or something a bit more is needed.

I am actually really proud to be a part of this and it wasn't just the dvd and pack that was mentioned but my Leigh support group was mentioned as well, and the Facebook group as all these including a website with a blog will be included. To say the least I was a little embarrassed but I  know that the group needs to get out there and know and that I want to help more people and that it is needed in the community and beyond.

It is not fully finished yet but it will be soon and then it will be trialed out! Fingers crossed it gets the recognition it deserves! .

In other news.. there is no news ;)  well no there is the general news we have now broken up for the Easter Holidays ( yes already!?) but i do think we have broken up early due to the fact Easter is so late and then it will clash with the May Bank holidays etc.  As it is, they go back on the 23rd and May Bank holiday is the 5th.  I'm not complaining, no early morning school run for two ish weeks! not much planned, wii games, dvd days visits to family will do!

Oh and a hospital visit to go to as well, taken long enough to get round to this! it was Last July when we last saw someone from the Drs and now we have blood work to do for her leg/ joint issues. The nut reaction we need to discuss and further tests i would like doing. If she will listen is another story!  And not long after that we are back in Manchester to go over the blood results if they show anything.  Again i fear we will be fobbed off with growing pain stories.  Lets see what the month brings!