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!

And just one more thing

Ever feel like just one more thing and you will snap? one more piece of straw will break the camels back?

Things seemed to be getting better regarding my daughter we had a nasty bout of skin infection which took a bit more then anti biotics to worse, it wasn't the worse spread infection we've had but it was getting worse, thankfully fucibet and anti biotics kicked it in the bum and we had a  couple of days where her eczema calmed down a little, it didn't go completely but just wasn't full blown. Thing is, if it isn't this causing issues its something else, mysterious knee pains, joint pains, bone pains?! something now I know she likes to carry on but i know when she is putting it on. Tonight was no put on and she was in agony, she can't bloody bend her knee when its so bad. but there is nothing and no answers yet?. Because growing pains, don't get warm and neither do they swell up. Thankfully now we don't have too much longer to wait to see the ped's at Wigan. Though it's taken long enough to get there!

To add to the list of things, She had a full blown allergic reaction last week, not eczema wise, not asthma, eating a new type of cereal which had been bought special for her, she started to have a bowl when she told me her throat felt funny ( i must add here she says funny things like, her throat is sweet or she is "dying" for a drink but its never like this) she then started to itch at her ears, both sides, and I asked her what the matter was and she was just saying, they were itchy, no eczema, so i thought it was very odd. but I let her carry on her cereal. Well next thing I knew she was crying in pain over her eye, really rubbing it at and I had a look and nothing was there, getting concerned I asked other mums on fb for some advise and then gave her a anti histamine to try and calm her down. In the mean time looking up itchy ears etc realising she was having a full blown reaction!! Never ever had this before so que me feeling like crap for passing it off as nothing  and her not having a clue what was going on. I pegged it down to the cereal and she had calmed down with the reaction after about 10-15 mins, though it took several hours for her eye to calm down.

Went to the drs, and we were told to avoid nuts and get some bloods done, took her after school and she didn't run away or scream the place down and was very brave ( does not happen often! ) and it was time to wait. One week later i ring the drs to see if they have returned to be told, yes they have and there was no further action needed. ERM?! pardon? did i make this reaction up? nothing has come up. Ok sigh lets try and see if we can figure out whats happened. Maybe i was playing it up all wrong or because she had rubbed her eye she made it that bad. resigned to the fact nothing had come up i asked for a drs appointment so we can have a chat. Today i went in just as i wanted to see the test results myself and or get a appointment closer, nothing except for on the day. Receptionist took a look at the results and went to see if she could print them off. Now she was gone a good 5-10 mins and when she came back she had been seeing the dr and something HAD come up. shock bloody horror! Now not a massive indicator but a mild one with possibly more ( it is ige levels and k/ul levels they look at through RAST, haven't a clue so don't ask) so since this had come up why the hell did i get told no further action? i could have very easily given her walnuts as i had made a home made carrot cake earlier this week, one with and one without walnuts! I am fuming!!

To say the least a complaint is going in and I am pulling the kids out of the practice atleast! thing is i still have to wait for this drs app with no indiction of what to do, I have had to ring up the community nurse team to talk to them about what to do! Been advised to keep away from nuts till we speak to the dr and that we might get a epi pen considering the reaction she did have.

Tonight she is covered in eczema, has serious knee pain and is well herself! wish something would give her a break, or actually us! some positive news or something to come along please. nice lottery win would be fantastic! lol. Would take us all away on a break, sod school fines! Because she bloody well deserves it!

The power of shared troubles

I have come to realise this past week that  running a support group is hard work on line, especially when people like to start arguments. Out there there are people suffering from something called topical steroid withdrawl and/ or  red skin syndrome, which can cause some serious issues when it comes to stopping steroids or becoming to addicted to them. Most of these people go cold turkey stopping using the steroid creams all together! now personally i wouldn't want to do this as it looks like hell! though most in the situation would say there is no other way.

My problem with some of these people are that they come onto  groups and start claiming that someone they haven't met has this problem or starts to scare people. Now I know there are issues with steroids, we know the risks and we are careful with what we do.  I will not be told that I am harming my daughter as she is having no visible issues because of her steroids creams, she has no symptoms of these conditions so I take this advice like most with a pinch of salt.

On my own support group on facebook because I had, had enough of these conversations going round in circles and having what seems to be verbally abusive/ pushy people sometimes they are almost as bad as people selling miracles creams! I had one telling me I was a control freak!  Hrm no I just don't want your advice forced down my throat! 

Anway! as we have had half term this week I asked to see if anyone wanted to do anything, This was a open invite on my own page and I have become friends with people from the group, some of the ladies wanted to come round! and it was so nice to finally be able to talk to someone face to face, one who suffers with the condition herself and one who's child suffers.  It's the knowledge that they know how you feel, with all the doctors appointments, all the sleepless nights. No one truely knows what it is like dealing with severe eczema unless they are there themselves. I almost felt like crying when they had gone.

We are not alone! Don't get me wrong I  know there are worse conditions out there, but these normally get more people to help out, financial help,  support groups, councellors something! we get next to nothing! and its a fight to get that! 

So my aim, this year, is to try and set up a support group in person, I should get some feedback tomorrow from someone in the National Eczema Society to set up a meeting and see if we can get anywhere!  

I know its different trying to set up a group in person then on line. But i really feel this is something i need to do and can do. 6/7 years of this knowledge has to come in handy somewhere!!

Trying

Everything seems so hard at the moment. I wanted to get this new year off to a good start, find a job, get the house and things sorted and finally get on to things we want to do. Being promised call backs and hearing nothing is a blow. I know we create our own messes in life, but when trying to sort things out, pick ourselves up and make things better why does it all have to be a kick in the teeth?

Not that I want to go out and send the little man to nursery just yet, but  needs must! though trying to find jobs working from home is a laugh,  trying to find something around school is even worse, but my family work, i  have asked about for child minders to see if any pick up from school and seem to come up with nothing.

I have been down the Avon route, and no one in the area is interested, or they do big orders then cancel on you.  I have done so many online surveys recently they are annoying! There are the odd typing at home jobs on line. However! you have to pass obviously  a lot of tests first and I have never done audio typing before now and doing the test, well I am not sure I am right for the job! I think I will have to find a cleaning job somewhere ( haha not like there are many of them around either! ) I would be better off trying to be a programmer!

On top of trying to find a job I have my poor daughter in pain, her eczema is so bad it looks like sun burn! her knee is causing her so much discomfort that it was even hurting this morning!  I am pretty sure I will be told that it is growing pains still.  But I can't wait till April for the Pediatric appointment to put a point across!

And this doesn't take more then an hour a day does it not? it is really infuriating me!  I should be the one at home being able to take care of her, not facing the prospect of finding someone adequate enough to look after her needs!