- My daughter Imogen was diagnosed with Polyarticular Juvenile Idiopathic Arthritis in Feb this year. She wasn't even three years old.I remember feeling so alone after diagnosis. I didn't know anyone else who had a child with this disease and we were literally just given a diagnosis and shoved out of the door by the local hospital. One of the first things I did when we were settled at home was Google, to see if there was anything out there for parents with children who have arthritis and other than places who gave lots of information, there wasn't much where I could discuss things with other people going through the same things.I have talked to a few arthritis parents since and everyone has said the same. There are no real places to go to talk to others in the same situation.So the idea of Our Arthritis Journey was born. I believe there is a real need for somewhere to share our experiences, get advice and support if we need it, and also somewhere for the younger sufferers to have somewhere to chat and talk to others like themselves.I have been on many forums throughout my life dealing with many different things. I decided that having a forum would be a good place to start. That way people could join, see that they weren't alone and that there were many other people going through the same thing.The forum opened yesterday (16.12.13) and we have 5 members so far. Eventually I would love this to expand and be a great community for people to come and discuss anything, from the weather where they are, to the next step in treatments for their child. Also it doesn't just have to be for parents, it can be for grandparents, aunts, uncles, siblings or anyone else affected by the bombshell that is JIA. Because the one thing we all know is that JIA does not just affect the child, it has a knock on effect for the whole family.
Tuesday 17 December 2013
I'm Sorry
I've neglected the blog :(
Imogen had over 20 joint injections on Monday 9th at Great Ormond Street Hospital. That was her third lot.
We are waiting for an enbrel referral so hopefully that will happen soon and we will get an idea of when that will be started. They have also upped her MTX to 12mg. Sadly Enbrel is another injection, so not much fun for poor moos!!
However she is still smiling, had a speaking part in her xmas play (extremely proud parents moment) and all in all she is doing ok.
I'm still spending time doing a lot of calling around to hospitals to chase things up which is annoying!
Edited to add: We have a website and a forum now too
http://imogensarthritisjour.wix.com/ourarthritisjourney
http://ourarthritisjourney.proboards.com/
xx
Imogen had over 20 joint injections on Monday 9th at Great Ormond Street Hospital. That was her third lot.
We are waiting for an enbrel referral so hopefully that will happen soon and we will get an idea of when that will be started. They have also upped her MTX to 12mg. Sadly Enbrel is another injection, so not much fun for poor moos!!
However she is still smiling, had a speaking part in her xmas play (extremely proud parents moment) and all in all she is doing ok.
I'm still spending time doing a lot of calling around to hospitals to chase things up which is annoying!
Edited to add: We have a website and a forum now too
http://imogensarthritisjour.wix.com/ourarthritisjourney
http://ourarthritisjourney.proboards.com/
xx
Thursday 1 August 2013
1 Hour 30 Minutes
Doesn't sound like very long does it?
90 minutes, 5400 seconds.
It's the longest time ever when your child is under general anaesthetic. It's almost like the clock goes backwards.
Imogen had 7 joint injections done today, on top of having an infection (which we didn't realise until her bloods came back afterwards)
She is covered in plasters and feeling very sorry for herself.
I hate arthritis. That is all
90 minutes, 5400 seconds.
It's the longest time ever when your child is under general anaesthetic. It's almost like the clock goes backwards.
Imogen had 7 joint injections done today, on top of having an infection (which we didn't realise until her bloods came back afterwards)
She is covered in plasters and feeling very sorry for herself.
I hate arthritis. That is all
Tuesday 11 June 2013
Our Story
On Sunday 3rd Feb, Imogen had gone to my mums for the day. Some time in the afternoon, my mum rang, and asked if Imogen had hurt her ankle at all as she had been limping and it was quite swollen. We hadn't noticed if she'd fallen over or anything to cause it.
Once mum had dropped her off, we had a look and the ankle was huge! It was also warm to touch. So off we went to our local A&E Dept, where they told me it was probably just a sprain and to come back in 48 hours if the swelling had not gone down.
Cue 48 hours later, by which time Imogen had a swollen wrist as well. We went back up to A&E to see if they could do XRays to see what was going on. Xrays showed no breaks, so we sent back to the A&E dept to wait for the Doctor. We were then told that they thought it was possibly Arthritis and that she'd be transferred to the Children's Ward so see Doctors up there.
A Doctor came in to see us and looked at the wrist and the ankle, she also noticed that since we'd been at the hospital, Imogen's knee was starting to swell. They wanted to keep her in overnight for observation and high doses of Ibuprofen to try and reduce the swelling.
The next day we saw the Consultant who took bloods for numerous tests to try and diagnose Imogen. Once these bloods came back we had a definite diagnosis of JIA (Juvenile Idiopathic Arthritis) They thought to begin with that it was Oligoarticular but as more joints became affected it was switched to Polyarticular.
So that's the beginning of our story!
X
Monday 10 June 2013
How Things Have Changed!
Well since I last posted, things have changed a lot. Imogen is happier and much more comfortable! She still has bad days, but there are less of them at the moment.
She still has active arthritis in her wrist, knee and ankle - however it has improved greatly from where we were.
We go back up to GOSH on the 28th to see the Consultants there, and I think they will probably up Imogen's MTX slightly to see if that can get rid of the active arthritis.
She had a joint injection under general anaesthetic last week! Her wrist, the worst joint, was swollen and sore, so they decided to give a steroid injection under GA to help. It was horrific for us, however she was in and out of theatre within about 20 minutes. We spent less than four hours in the hospital!
So all in all things are certainly better! All I can say, is it's about time! x
She still has active arthritis in her wrist, knee and ankle - however it has improved greatly from where we were.
We go back up to GOSH on the 28th to see the Consultants there, and I think they will probably up Imogen's MTX slightly to see if that can get rid of the active arthritis.
She had a joint injection under general anaesthetic last week! Her wrist, the worst joint, was swollen and sore, so they decided to give a steroid injection under GA to help. It was horrific for us, however she was in and out of theatre within about 20 minutes. We spent less than four hours in the hospital!
So all in all things are certainly better! All I can say, is it's about time! x
Friday 3 May 2013
Wow!!
Well, after the blood tests, canula insertions, stupid amounts of steroids being pumped into my baby girl's body, there has been a noticable difference.
When they do Imogen's blood tests, they test the ESR rate:
When they do Imogen's blood tests, they test the ESR rate:
"The erythrocyte sedimentation rate (ESR), also called a sedimentation rate or Westergren ESR, is the rate at which red blood cells sediment in a period of one hour. It is a common hematology test, and is a non-specific measure of inflammation. To perform the test, anticoagulated blood is placed in an upright tube, known as a Westergren tube, and the rate at which the red blood cells fall is measured and reported in mm/h.
Since the introduction of automated analyzers into the clinical laboratory, the ESR test has been automatically performed.
The ESR is governed by the balance between pro-sedimentation factors, mainly fibrinogen, and those factors resisting sedimentation, namely the negative charge of the erythrocytes (zeta potential). When an inflammatory process is present, the high proportion of fibrinogen in the blood causes red blood cells to stick to each other. The red cells form stacks called 'rouleaux,' which settle faster. Rouleaux formation can also occur in association with some lymphoproliferative disorders in which one or more immunoglobulins are secreted in high amounts. Rouleaux formation can, however, be a normal physiological finding in horses, cats, and pigs.
The ESR is increased by any cause or focus of inflammation. The ESR is increased in pregnancy, inflammation, anemia or rheumatoid arthritis, and decreased in polycythemia, sickle cell anemia, hereditary spherocytosis, and congestive heart failure. The basal ESR is slightly higher in females."
Now last time this was tested on the 2nd April, Imogen's ESR was 97! The normal range for her age is between 3-13. She was tested again on the 30th April and her ESR is now...11.
Well within the normal range! So obviously we are on the right track and things are getting better. Her White Blood Cells are still a little high but with time hopefully they will come down a bit more.
Happy day :)
X
Thursday 25 April 2013
Buzzy
Hey all :)
Ordered Imogen's Buzzy this morning :) We've gone for the LadyBuzz with the Bee-Stractors to hopefully make things a little easier.
Hydrotherapy did not go as well as anticipated. I think Imogen is afraid of water. I'm not sure why, but there is definitely something there. The Hydro room was boiling!!! I could have quite happily stripped and got in the pool too!! Riley ended up with just his jeans on in there as it was just overpowering!
We're hoping as she is going to be having weekly 30 min sessions that we can overcome this fear and we are going to take her swimming every weekend as a family to hopefully conquer it.
MTX day tomorrow. Community Nurse is coming out at 2pm to do the injection and fill in all the relevant paperwork. I'm so sick of paperwork! I seem to spend my life filling in forms for something or the other!!
Trying to contact the Consultant's Secretary today as well, as when Imogen gets her next blood tests I would like them to check her immunity to measles. She had the original jab at 13 months, but was due a booster in a few weeks. But due to MTX she cannot have any live vaccines. I just want to check that she's at least a little bit covered!
X
Ordered Imogen's Buzzy this morning :) We've gone for the LadyBuzz with the Bee-Stractors to hopefully make things a little easier.
Hydrotherapy did not go as well as anticipated. I think Imogen is afraid of water. I'm not sure why, but there is definitely something there. The Hydro room was boiling!!! I could have quite happily stripped and got in the pool too!! Riley ended up with just his jeans on in there as it was just overpowering!
We're hoping as she is going to be having weekly 30 min sessions that we can overcome this fear and we are going to take her swimming every weekend as a family to hopefully conquer it.
MTX day tomorrow. Community Nurse is coming out at 2pm to do the injection and fill in all the relevant paperwork. I'm so sick of paperwork! I seem to spend my life filling in forms for something or the other!!
Trying to contact the Consultant's Secretary today as well, as when Imogen gets her next blood tests I would like them to check her immunity to measles. She had the original jab at 13 months, but was due a booster in a few weeks. But due to MTX she cannot have any live vaccines. I just want to check that she's at least a little bit covered!
X
Wednesday 24 April 2013
Hydrotherapy Day
Imogen has Hydro this afternoon. She's looking forward to it which is nice. It'll be nice that she'll have a treatment that she enjoys rather than all these invasive treatments that hurt her.
We finally got our DLA decision this week too... We got awarded!! I am amazed, as everyone I have spoken to, told us that it was doubtful to be awarded first time. She will now be getting High Rate Mobility and Middle Rate Care. The money will be used for hospital trips and things that Imogen needs. We are also going to buy the Buzzy out of it when it arrives in my bank.
Joints don't seem to be swelling so far, but I think we are just waiting for them to come back up. Hopefully they won't but with 5-7 weeks before the MTX begins to work efficiently, I have a horrible feeling that another pulse of IV steroids may well be on the cards.
But PMA and hopefully Imogen is now going to feel better as we get her condition under control.
More later after Hydro
X
We finally got our DLA decision this week too... We got awarded!! I am amazed, as everyone I have spoken to, told us that it was doubtful to be awarded first time. She will now be getting High Rate Mobility and Middle Rate Care. The money will be used for hospital trips and things that Imogen needs. We are also going to buy the Buzzy out of it when it arrives in my bank.
Joints don't seem to be swelling so far, but I think we are just waiting for them to come back up. Hopefully they won't but with 5-7 weeks before the MTX begins to work efficiently, I have a horrible feeling that another pulse of IV steroids may well be on the cards.
But PMA and hopefully Imogen is now going to feel better as we get her condition under control.
More later after Hydro
X
Sunday 21 April 2013
So far, So Good
Imogen had her Methotrexate injection (hereby known as MTX as fed up of having to type it lol) on Friday morning. So far so good, no adverse side effects which is good. It's a low dose of chemotherapy to try and knock out her immune system so it stops attacking itself. Weekly injections for at least TWO years, which is not so good, but as always we will manage.
We are looking at getting Imogen a Buzzy http://www.buzzy4shots.co.uk/index.html
They are supposed to help with pain from injections, blood tests etc. To my readers, have you used one? Did it work for you?
I will write up a review once we have got one and tried it out.
But Imogen has been in fine form these last few days. She spent time today running around with her older brother and her cousin :) It is lovely to see, and she's so happy and cheerful at the moment.
The steroids have started to fill her face out though, she is beginning to look a little chubby bless her :)
Have got to ring the Dr's tomorrow as Imogen is extremely constipated due to the amount of medication she's taking :( She's just woken up due to the fact that she cannot poo!
But in the grand scheme of things... to be honest it could be much worse!!!
X
We are looking at getting Imogen a Buzzy http://www.buzzy4shots.co.uk/index.html
They are supposed to help with pain from injections, blood tests etc. To my readers, have you used one? Did it work for you?
I will write up a review once we have got one and tried it out.
But Imogen has been in fine form these last few days. She spent time today running around with her older brother and her cousin :) It is lovely to see, and she's so happy and cheerful at the moment.
The steroids have started to fill her face out though, she is beginning to look a little chubby bless her :)
Have got to ring the Dr's tomorrow as Imogen is extremely constipated due to the amount of medication she's taking :( She's just woken up due to the fact that she cannot poo!
But in the grand scheme of things... to be honest it could be much worse!!!
X
Thursday 18 April 2013
Ahhh Bliss!
Imogen has gone to nursery!!! 3 hours of blissful me and Riley time! With Easter Holidays Imogen has been off nursery for 3 weeks. It is lovely to have the time just me and the boy :)
Imogen had all three doses of IV steroids this week. It finished yesterday. She goes for her Methotrexate injection tomorrow at 10 am, then it's just waiting for it to begin working. I need to get onto the Community Nurses and find out if it has all been arranged for them to come out and give Imogen her injection at home. Although it's going to be tricky working it as she's at nursery 8.45-12.30 then comes home for an hour and then hopefully will be off with her brother to another nursery at 2pm so I can go to work.
Yes I am now a working mum!! I had a job interview on Monday and they offered me the job. Hours are slightly akward, but am trying to get the kids into a nursery just down the road from me for 2 afternoons a week so that I can start work at 3.30 and daddy can pick them up when he finishes.
Seems to be a pretty positive week this week. Hopefully it continues :)
X
Imogen had all three doses of IV steroids this week. It finished yesterday. She goes for her Methotrexate injection tomorrow at 10 am, then it's just waiting for it to begin working. I need to get onto the Community Nurses and find out if it has all been arranged for them to come out and give Imogen her injection at home. Although it's going to be tricky working it as she's at nursery 8.45-12.30 then comes home for an hour and then hopefully will be off with her brother to another nursery at 2pm so I can go to work.
Yes I am now a working mum!! I had a job interview on Monday and they offered me the job. Hours are slightly akward, but am trying to get the kids into a nursery just down the road from me for 2 afternoons a week so that I can start work at 3.30 and daddy can pick them up when he finishes.
Seems to be a pretty positive week this week. Hopefully it continues :)
X
Saturday 13 April 2013
What a Week...
It's been a very long week this week.
We saw the Paediatric Registrar on Tuesday, who agreed that Imogen had improved enough to begin the Methotrexate. However nobody on the ward was qualified to do it this week as it needs to be administered by a Chemotherapy trained nurse. It is now set for next Friday at 10 am. It is still going to take another 6-8 weeks to begin working.
To continue her treatment Imogen was put on oral steroids to help deal with the swelling and painful joints. However, sadly this has not been the case. As of this evening, Imogen is back in full flare of all 8 joints.
We go back up for another round of IV steroids on Monday, Tuesday and Wednesday, she has physio on Thursday and then Methotrexate Friday. Oh joy another all weeker :(
X
We saw the Paediatric Registrar on Tuesday, who agreed that Imogen had improved enough to begin the Methotrexate. However nobody on the ward was qualified to do it this week as it needs to be administered by a Chemotherapy trained nurse. It is now set for next Friday at 10 am. It is still going to take another 6-8 weeks to begin working.
To continue her treatment Imogen was put on oral steroids to help deal with the swelling and painful joints. However, sadly this has not been the case. As of this evening, Imogen is back in full flare of all 8 joints.
We go back up for another round of IV steroids on Monday, Tuesday and Wednesday, she has physio on Thursday and then Methotrexate Friday. Oh joy another all weeker :(
X
Saturday 6 April 2013
Yay!!
Imogen finished her last dose of IV steroids yesterday! She also had her eye test which shows no signs of Uveitis!!
She is now on 4 days of oral steroids which finish on Tuesday. We go back up to the hospital Tuesday morning to see the Paediatric Registrar, who will give us the next lot of steroids and hopefully a date for her first Methotrexate injection. She is going to be on the steroids for two months as the Methotrexate will take about that time to work.
Injections once a week are going to be tough, but I'm debating learning to do them myself as I think it will be less stressful for Imogen if it can just be done at home by me. As much as I hate the idea, I'd rather make the whole thing as stress free for Imogen as possible.
Anyway, we have noticed a definite improvement in Imogen herself after being on the IV. The swelling has definitely gone down, it's not completely gone, but it's so much better than it was. She is moving so much better as well. Although we are certainly getting some mood swings, she is a lot happier and we're not having so much crying and just general upset.
It's almost like I have my little girl back :)
I am so proud of the way she is just getting on with it all. She's dealing so much better than I would!!
X
She is now on 4 days of oral steroids which finish on Tuesday. We go back up to the hospital Tuesday morning to see the Paediatric Registrar, who will give us the next lot of steroids and hopefully a date for her first Methotrexate injection. She is going to be on the steroids for two months as the Methotrexate will take about that time to work.
Injections once a week are going to be tough, but I'm debating learning to do them myself as I think it will be less stressful for Imogen if it can just be done at home by me. As much as I hate the idea, I'd rather make the whole thing as stress free for Imogen as possible.
Anyway, we have noticed a definite improvement in Imogen herself after being on the IV. The swelling has definitely gone down, it's not completely gone, but it's so much better than it was. She is moving so much better as well. Although we are certainly getting some mood swings, she is a lot happier and we're not having so much crying and just general upset.
It's almost like I have my little girl back :)
I am so proud of the way she is just getting on with it all. She's dealing so much better than I would!!
X
Thursday 4 April 2013
Eye Test...
Well it's the dreaded eye test tomorrow. Not looking forward to it at all :(
Second day of steroids today and it's knocked Imogen for six. My poor baby girl looks so drained. Big dark circles under her eyes, pale, grumpy and just not her usual self. I hate seeing her like this, but I know it's the best thing for her. The saying "you've gotta be cruel to be kind" is keeping me sane.
We have noticed some improvement already though which makes me feel a little better. Swelling has gone down a bit and also the joints are not so hot to touch. She was moving a lot easier today too.
Last dose tomorrow after her eye test, then she has four days of oral prednisone. We see the Dr next Tuesday and if they are happy with the improvements, we should get an idea of when we start Methotrexate.
It's been an emotionally draining week for us all. We have been in one hospital or another every day this week. I can't wait to get tomorrow out of the way and then have the weekend off. We definitely need it!
Wednesday 3 April 2013
Day One
Of IV steroids. Not too bad at all really. Bit of crying when the canula was put in, then a bit more once she got hooked up to the IV, but that was more because she couldn't go anywhere. You try telling a 3 year old that they can't go far, it's impossible. However the fabulous Play Specialist was there saving the day. He bought Imogen a TV in so that she could watch Toy Story whilst having her infusion! Cue happy child sat on Daddy's knee for the whole 30+ minutes of her infusion. After infusion was given we were allowed to go home. They have kept the canula in to save having to put it in daily.
We go back at 11am tomorrow for round two!!
We go back at 11am tomorrow for round two!!
Tuesday 2 April 2013
Well We Got There...
Woke up late this morning!! Couldn't believe it! Important day, didn't want to get stuck in traffic so we were planning on leaving before 7 to make sure we were there on time. 7.45 we left the house because we had overslept!! However even with that we arrived at GOSH an hour early!
The drive up was great, no traffic until we hit London, and the way we had chosen to go, we saw all the big sights! Big Ben, London Eye, Houses of Parliment. It was great!! Imogen and Riley were not interested at all, but turns out I am a bit of a tourist at heart!!
Anyway, got to our appointment and saw the Dr. She agreed it is definitely polyarticular arthritis and that medication is the way forward. 8 of Imogen's joints are badly affected, so they have decided on a 3 day course of IV steroids (Prednisolone). However this is being done at our local hospital so that's a bonus! They are beginning it at 11am tomorrow! She goes in, sees the Dr who will put the canula in her hand then start her first "pulse". She then has her full dose which should take around 30 mins and then we can leave. We then go back up Thursday and Friday to have the other two doses. No hospital stay!!! After she has had her 3 doses, she then goes onto liquid steroids for another 4 days. If all works successfully, we will then be starting methotrexate :)
All in all a good day!!
The drive up was great, no traffic until we hit London, and the way we had chosen to go, we saw all the big sights! Big Ben, London Eye, Houses of Parliment. It was great!! Imogen and Riley were not interested at all, but turns out I am a bit of a tourist at heart!!
Anyway, got to our appointment and saw the Dr. She agreed it is definitely polyarticular arthritis and that medication is the way forward. 8 of Imogen's joints are badly affected, so they have decided on a 3 day course of IV steroids (Prednisolone). However this is being done at our local hospital so that's a bonus! They are beginning it at 11am tomorrow! She goes in, sees the Dr who will put the canula in her hand then start her first "pulse". She then has her full dose which should take around 30 mins and then we can leave. We then go back up Thursday and Friday to have the other two doses. No hospital stay!!! After she has had her 3 doses, she then goes onto liquid steroids for another 4 days. If all works successfully, we will then be starting methotrexate :)
All in all a good day!!
Monday 1 April 2013
Gosh, We're Off to GOSH!!
Yep, it's Tuesday tomorrow! Which means the dreaded trip to London and Great Ormond Street Hospital. I am terrified of going! But I know deep down that nowhere will be able to treat her any better.
It's hard to get my head around the fact that my little girl needs this sort of intervention to be able to get on with her life happily.
I know the why questions can't be answered, but as long as we can begin the journey to making Imogen more comfortable I can't really ask for anything else!
So we're leaving about 6.30am (not happy, I am not a morning person) to make sure we don't get stuck in too much traffic. Probably grab some breakfast on the way. I have already sorted out a packed lunch for the kids so they can have a munch if they get hungry.
I have already paid my congestion charge, as you can guarantee I will forget by the time we get back here and I can do without a massive fine!!
I think I have everything in order. Now it's just getting to sleep which I can see being an issue this evening. I think it might be time for a glass of wine.
X
It's hard to get my head around the fact that my little girl needs this sort of intervention to be able to get on with her life happily.
I know the why questions can't be answered, but as long as we can begin the journey to making Imogen more comfortable I can't really ask for anything else!
So we're leaving about 6.30am (not happy, I am not a morning person) to make sure we don't get stuck in too much traffic. Probably grab some breakfast on the way. I have already sorted out a packed lunch for the kids so they can have a munch if they get hungry.
I have already paid my congestion charge, as you can guarantee I will forget by the time we get back here and I can do without a massive fine!!
I think I have everything in order. Now it's just getting to sleep which I can see being an issue this evening. I think it might be time for a glass of wine.
X
Friday 29 March 2013
Joints Affected...
Update on Imogen's joints that are affected:
Big Toe on Right foot
Right Ankle
Right Knee
Forth Finger on Right hand - Both top and middle joint
Left Ankle
Left Knee
Left Wrist
Possible Joints Affected:
Both Hips
Both Elbows
Some joints in her left hand
Both Shoulders
Big Toe on Right foot
Right Ankle
Right Knee
Forth Finger on Right hand - Both top and middle joint
Left Ankle
Left Knee
Left Wrist
Possible Joints Affected:
Both Hips
Both Elbows
Some joints in her left hand
Both Shoulders
Left Hand
Imogen seems to have an issue with her left hand. The whole palm is swollen and there is redness under all the knuckle joints. I'm really hoping this isn't another flare! Although all the signs have been there this week :(
At least we see the Rheumatology Doctor on Tuesday up at Great Ormond Street! We should hopefully get some ideas on how to manage her pain and also we'll have a better idea of how to treat it.
We have a busy week next week! GOSH Tuesday, local hospital Wednesday for blood tests and also Friday for eye test. I'm scared stiff about the eye test! They will be looking to see whether Imogen has Uvetis. Sadly it's one of the many sides from the JIA. It can cause blindness if left untreated.
I have attached a link to a website that gives a lot of information about uvetis and treatments etc for anyone who wants to look.
http://www.oliviasvision.org/
Easter weekend, so probably no posts from me til Monday. Hope you all have a great weekend whatever you're doing
X
At least we see the Rheumatology Doctor on Tuesday up at Great Ormond Street! We should hopefully get some ideas on how to manage her pain and also we'll have a better idea of how to treat it.
We have a busy week next week! GOSH Tuesday, local hospital Wednesday for blood tests and also Friday for eye test. I'm scared stiff about the eye test! They will be looking to see whether Imogen has Uvetis. Sadly it's one of the many sides from the JIA. It can cause blindness if left untreated.
I have attached a link to a website that gives a lot of information about uvetis and treatments etc for anyone who wants to look.
http://www.oliviasvision.org/
Easter weekend, so probably no posts from me til Monday. Hope you all have a great weekend whatever you're doing
X
Wednesday 27 March 2013
Facebook...
To all our readers,
We have a facebook page. Feel free to like and share :)
http://www.facebook.com/ImogensArthritisJourney
x
Tuesday 26 March 2013
Well...
Physio went well. Although to be fair it just meant Imogen got to play in the gym with all the toys bless her. She is being referred for Hydrotherapy and will be getting specialist insoles and a knee splint to keep her knee in a good position when she sleeps.
We got our Great Ormond Street appointment through! There's me thinking it's gonna be weeks away. Nope, just a week. Next Tuesday we are travelling up to London! It's scary though!! But at least we'll have some idea of where we are going with Imogen's treatment.
I met the consultant's secretary today! Well, she was not what I expected in the slightest!
We got our Great Ormond Street appointment through! There's me thinking it's gonna be weeks away. Nope, just a week. Next Tuesday we are travelling up to London! It's scary though!! But at least we'll have some idea of where we are going with Imogen's treatment.
I met the consultant's secretary today! Well, she was not what I expected in the slightest!
Monday 25 March 2013
Physio Tomorrow
Imogen has been waking during the night complaining of pain. When she gets out of bed, she can barely walk. It's the most heartbreaking sight, seeing my baby girl hobbling along like an old woman.
Hopefully Physio will be able to give us some ideas on how to make it easier for her tomorrow.
X
Friday 22 March 2013
Banging My Head Against A Brick Wall!
This is exactly how I feel today! Frustration may kill me, if my kids don't!
Referral to Great Ormond Street has been achieved. The referral was sent over today (We saw consultant on tues) We now have to wait for a Doctor there to sign it off. Then it will be sent to their booking appointments bit, then they will phone me with dates for an appointment and all I have to do is pick one. However they are experiencing a backlog, so it may take some time for them to process it! So more phoning next week just to get a date!
Opthamology is being chased up again as still no appointment there. Imogen has been having issues with her eyes in the last week, with them being slightly red and itchy, so need referral sooner rather than later!
DLA are being bloody useless! They sent a request for a consultant form on 3rd March. Have they bothered to chase it up? No course not! The Consultant hasn't even recieved the form, so I have now had to phone DLA and ask them to ring the Consultant so that the form can be faxed over and then faxed back.
Tax Credits are being less than useless too. Sent my appeal back to them about something unrelated, they have not received the form or at least haven't updated the system to say they have.
I have decided I hate Tuesdays and Fridays. These are the days Imogen goes to nursery. It is lovely to get that few hours just me and the boy, but omg! Do I pay for it afterwards or what? Unrelentless crying over anything, grumpy, miserable, whinging child from hell! I really wonder whether this nursery lark is worth it! I don't want to take her out though. She loves it!!
I really wonder on days like today, what exactly we did to deserve this? Why us? Why our little girl? Sadly none of these questions have an answer and there is nothing I can do about it now. So enough of the self pity! Better suck it up and get on with it like we always do!
Referral to Great Ormond Street has been achieved. The referral was sent over today (We saw consultant on tues) We now have to wait for a Doctor there to sign it off. Then it will be sent to their booking appointments bit, then they will phone me with dates for an appointment and all I have to do is pick one. However they are experiencing a backlog, so it may take some time for them to process it! So more phoning next week just to get a date!
Opthamology is being chased up again as still no appointment there. Imogen has been having issues with her eyes in the last week, with them being slightly red and itchy, so need referral sooner rather than later!
DLA are being bloody useless! They sent a request for a consultant form on 3rd March. Have they bothered to chase it up? No course not! The Consultant hasn't even recieved the form, so I have now had to phone DLA and ask them to ring the Consultant so that the form can be faxed over and then faxed back.
Tax Credits are being less than useless too. Sent my appeal back to them about something unrelated, they have not received the form or at least haven't updated the system to say they have.
I have decided I hate Tuesdays and Fridays. These are the days Imogen goes to nursery. It is lovely to get that few hours just me and the boy, but omg! Do I pay for it afterwards or what? Unrelentless crying over anything, grumpy, miserable, whinging child from hell! I really wonder whether this nursery lark is worth it! I don't want to take her out though. She loves it!!
I really wonder on days like today, what exactly we did to deserve this? Why us? Why our little girl? Sadly none of these questions have an answer and there is nothing I can do about it now. So enough of the self pity! Better suck it up and get on with it like we always do!
Wednesday 20 March 2013
Consultant..
Was pretty much what we expected. "We can't really deal with this here, so we're going to refer her to another hospital"
The hospital we're being referred to: Great Ormond Street in London. I'm sure it sounds scarier than it actually is! Although the idea absolutely terrifies me!
The plan is to get her in to have steroid joint injections under general anasthetic :( They may help, but they may only offer relief for a couple of months. If that's the case then we have to go up and have them regularly.
So who knows?
We're still no better off until we actually have the appointment at GOSH, but they are one of the best children's hospitals in the country so hopefully they'll be able to get this under control for my gorgeous girl!
x
The hospital we're being referred to: Great Ormond Street in London. I'm sure it sounds scarier than it actually is! Although the idea absolutely terrifies me!
The plan is to get her in to have steroid joint injections under general anasthetic :( They may help, but they may only offer relief for a couple of months. If that's the case then we have to go up and have them regularly.
So who knows?
We're still no better off until we actually have the appointment at GOSH, but they are one of the best children's hospitals in the country so hopefully they'll be able to get this under control for my gorgeous girl!
x
Tuesday 19 March 2013
Waiting....
OMG! Time is dragging it's heels today. Consultant at 3.30. It's still another 2 hours away, I swear time is almost going backwards :(
Monday 18 March 2013
Less than 24 Hours to go....
And Imogen sees the Consultant.
I am terrified of what they are going to say about my little girl. I have read so many things about different treatments, my mind has boggled slightly.
One thing I have realized These days the only "person" I can talk to about this is the blog. How sad is that? Most of my friends disappeared the moment the word "disability" was mentioned. It hurts to realize that we meant so little to people. Especially the person I most saw as my friend. She couldn't get away fast enough. Which is funny cos my old best friend did exactly the same thing and I was told that I should grow a backbone and tell her where to go. Now I look at things differently and saw it coming, so did something about it early. Now I'm the bad one for following the advice I was given in the first place. Can anyone say hypocritical?
Sure I will blog again later when I can't sleep
x
I am terrified of what they are going to say about my little girl. I have read so many things about different treatments, my mind has boggled slightly.
One thing I have realized These days the only "person" I can talk to about this is the blog. How sad is that? Most of my friends disappeared the moment the word "disability" was mentioned. It hurts to realize that we meant so little to people. Especially the person I most saw as my friend. She couldn't get away fast enough. Which is funny cos my old best friend did exactly the same thing and I was told that I should grow a backbone and tell her where to go. Now I look at things differently and saw it coming, so did something about it early. Now I'm the bad one for following the advice I was given in the first place. Can anyone say hypocritical?
Sure I will blog again later when I can't sleep
x
Sunday 17 March 2013
Friends
Yeah what friends? Since Imogen's diagnosis, seems like most people have crawled under rocks. You know what, if that's the way you want to be, we don't need you anyway!
Something I have written for Consultant
Day to Day Differences in Imogen
Imogen can no longer:
Imogen can no longer:
- Get down to floor or get up from floor alone
- Cannot get up onto chair/sofa unaided
- She falls regularly due to imbalance
- She can no longer jump
- she can no longer run, due to imbalance she falls and cannot get up unaided.
Imogen's Medication:
- Naproxen 2.5ml Twice Daily
- Omeprazole 20mg per day
- Latulose Syrup 10ml twice daily
- Junior Disprol 2 tablets when necessary
Imogen's Attitude and Behaviour:
- Imogen has gone from a child who never cried to a child who cries regularly about anything.
- She is often tired and lethargic and does not want to do anything. She has started napping in the day time again. She hasn't done this since she was about 18 months old.
- She no longer eats properly, she picks at her food and rarely finishes a meal.
Joints Affected:
- Right Ankle, Knee and Finger
- Left ankle, knee, wrist
- Swelling and heat present in above joints
- Query stiffness in both hips and elbows
- Movement is affected in all joints mentioned
Issues:
- Imogen hates disposable Omeprazole. Possibility of trying liquid form? We have tried many different ways of giving it, but to no avail.
- Naproxen seems to be offering little to no relief from pain or inflammation. Swelling has not gone down since original flare (2/2/13) Have been supplementing Naproxen with Paracetamol but still not a great deal of relief given
- Brufen made Imogen sick and now Naproxen has given her constipation
- Eyes seem red and she seems to rub them a lot. Still no appointment from Opthamology.
- Ankles are now turning inwards when she walks. Worried about long term damage to her bones as she has been in flare so long. Any plans to scan to check?
Wednesday 13 March 2013
Rant about the NHS
So, girlie really suffering now. Mobility in her hip is definitely causing her some issues, but it also looks like her other ankle is beginning to flare as well.
So Monday I rang the Rheumatology Advice Line at our local hospital where our Consultant is based. I spoke to the Rheumatology Nurse who told me straight out that she couldn't give me any advice as she didn't deal with Pediatrics. Some advice line!
So yesterday I rang the Pediatric Rheumatologist that we are due to see on 19th, to see if there was any possibility of them seeing her earlier as the longer she is in flare, the more risk there is of long term damage to her joints. She has been in active flare since diagnosis so over a month. I was told by the Secretary that they only do Pediatric clinics once a month and they would not see her in the General Rheumatology Clinic as she was a child. Mega helpful thanks!
I then spoke to the GP as Girlie is suffering constipation as a side effect of the Naproxen, he prescribed Lactolose Syrup to see if that would help.
After this conversation with my GP I realised that I have no faith in the hospital that is treating my daughter as their concern is older patients with arthritis rather than children. So I made an appointment to see the GP yesterday evening to ask about a referral to a different hospital.
Got to the Dr's appointment and discussed my concerns, turns out that the GP cannot refer us to a specialist children's hospital as it is in a tiered system, Drs refer to district hospitals and then district hospitals refer to Specialists. So even then we are still no closer to getting something done about I's issues.
I am so frustrated with the whole system, it's a joke! My daughter is suffering and it seems that nobody seems to actually care about the situation. I am totally fed up and sick of phoning the hospital every day to try and get things moving. It would be really nice to say I give up and I'm not doing it anymore, but that's my baby girl suffering and if you think we are taking it lying down.... Think again!!
So Monday I rang the Rheumatology Advice Line at our local hospital where our Consultant is based. I spoke to the Rheumatology Nurse who told me straight out that she couldn't give me any advice as she didn't deal with Pediatrics. Some advice line!
So yesterday I rang the Pediatric Rheumatologist that we are due to see on 19th, to see if there was any possibility of them seeing her earlier as the longer she is in flare, the more risk there is of long term damage to her joints. She has been in active flare since diagnosis so over a month. I was told by the Secretary that they only do Pediatric clinics once a month and they would not see her in the General Rheumatology Clinic as she was a child. Mega helpful thanks!
I then spoke to the GP as Girlie is suffering constipation as a side effect of the Naproxen, he prescribed Lactolose Syrup to see if that would help.
After this conversation with my GP I realised that I have no faith in the hospital that is treating my daughter as their concern is older patients with arthritis rather than children. So I made an appointment to see the GP yesterday evening to ask about a referral to a different hospital.
Got to the Dr's appointment and discussed my concerns, turns out that the GP cannot refer us to a specialist children's hospital as it is in a tiered system, Drs refer to district hospitals and then district hospitals refer to Specialists. So even then we are still no closer to getting something done about I's issues.
I am so frustrated with the whole system, it's a joke! My daughter is suffering and it seems that nobody seems to actually care about the situation. I am totally fed up and sick of phoning the hospital every day to try and get things moving. It would be really nice to say I give up and I'm not doing it anymore, but that's my baby girl suffering and if you think we are taking it lying down.... Think again!!
Saturday 9 March 2013
Awful!
Been an awfully long week this week. Girlie is on the Naproxen, but seems to be getting no relief from it at all. She is constantly whingy and tired and upset as she is in so much pain. If she sits still too long the joints begin to seize. It's hard to take as there is nothing I can do.
The 19th March seems so far away. I am seeing her suffer day in day out and I can't help her :( Her knee and ankle have flared again and she's just so unhappy.
She can hardly walk at all now, she won't voluntarily walk anywhere. If she gets the choice she'd rather do nothing than play like a normal child of 3 should do.
My heart is breaking, I don't know how much more of this she or I can take.
x
The 19th March seems so far away. I am seeing her suffer day in day out and I can't help her :( Her knee and ankle have flared again and she's just so unhappy.
She can hardly walk at all now, she won't voluntarily walk anywhere. If she gets the choice she'd rather do nothing than play like a normal child of 3 should do.
My heart is breaking, I don't know how much more of this she or I can take.
x
Wednesday 6 March 2013
Physio
Got Girlie's physio appointment date today :) 26th March. Not too long which is good.
She's struggling a bit more now though. She is really unsteady on her feet as her ankles and knees aren't giving her the support they should. She's grumpy a lot, but we think that is because she is in pain. We have started off the new med Naproxen, but it doesn't seem to be making much difference. Swelling is still there and also still reduced movement.
Steps are also an issue as her knee doesn't bend too well so she normally asks to be carried if there are stairs anywhere. Seeing as we have a set just outside the house, it makes life a little bit awkward.
She doesn't play as much as she used to, she'd much rather sit and read a book or watch tv, which is a shame, but hopefully soon we'll get a treatment that works and will make her feel better and she'll be able to do all those things she's supposed to be doing :)
She's struggling a bit more now though. She is really unsteady on her feet as her ankles and knees aren't giving her the support they should. She's grumpy a lot, but we think that is because she is in pain. We have started off the new med Naproxen, but it doesn't seem to be making much difference. Swelling is still there and also still reduced movement.
Steps are also an issue as her knee doesn't bend too well so she normally asks to be carried if there are stairs anywhere. Seeing as we have a set just outside the house, it makes life a little bit awkward.
She doesn't play as much as she used to, she'd much rather sit and read a book or watch tv, which is a shame, but hopefully soon we'll get a treatment that works and will make her feel better and she'll be able to do all those things she's supposed to be doing :)
Saturday 2 March 2013
Re-Diagnosis
Having finally spoken to the Consultant yesterday, Girlie has been re-diagnosed.
As more than five joints are affected, it is now Polyarticular JIA.
As more than five joints are affected, it is now Polyarticular JIA.
Polyarthritis JIA – the second most common type of JIA
- This type of JIA tends to cause painful swelling in fingers, toes, wrists, ankles, hips, knees, and the neck and jaw.
- It may come on suddenly or can steadily involve more joints over a period of months.
- You may feel unwell and tired and occasionally develop a slight fever.
- The symptoms may continue into adult life but it can go into a state where all the symptoms disappear. This is called remission.
- A blood test will show whether a marker called rheumatoid factor is present in your blood.
So he's going to get on the phone to Physiotherapy and see when they can see her to try and help with the stiffness and the reduced movement.
She is however feeling much better, and her stomach seems to have settled. Am going to start her back on her meds on Monday.
If it starts again she will be taken off and we will have to try some other types of medicines to try and get things under control.
Thursday 28 February 2013
Seriously? Can I Just Go Back To Bed?
Wow! Been a rough few days.
Girlie seems to have got a dodgy side effect from the amount of Ibuprofen she has been taking. We are talking Indigestion! She has been sick on and off since 1.30am Weds morning.
Tried unsuccessfully to get hold of the Consultant again, but surprise, surprise no answer.
Ended up with the fact that I had to ring the Children's Ward of our hospital to speak to a Dr there. He has suggested upping her Omeprazole to see if that helps.
Only thing is, now she's not eating I can't give her the new medication as it has to be taken with food. So the limp is back in full force. It almost looks like her foot is turning outwards when she walks. She is flaring in her other knee now, so it is getting to the point where she is really starting to suffer.
I don;t know what to do to make anything better for her. I feel so bloody helpless and it kills me!
Girlie seems to have got a dodgy side effect from the amount of Ibuprofen she has been taking. We are talking Indigestion! She has been sick on and off since 1.30am Weds morning.
Tried unsuccessfully to get hold of the Consultant again, but surprise, surprise no answer.
Ended up with the fact that I had to ring the Children's Ward of our hospital to speak to a Dr there. He has suggested upping her Omeprazole to see if that helps.
Only thing is, now she's not eating I can't give her the new medication as it has to be taken with food. So the limp is back in full force. It almost looks like her foot is turning outwards when she walks. She is flaring in her other knee now, so it is getting to the point where she is really starting to suffer.
I don;t know what to do to make anything better for her. I feel so bloody helpless and it kills me!
Tuesday 26 February 2013
One of those Days
Seriously, I am getting so fed up now.
Girlie needs a referral for opthamology to have her eyes tested. Now her consultant and opthamology are in the same building of the hospital, but it still hasn't been sent yet.
She needs a Naproxen Suspension (NSAID) to see if that will help control swelling of joints. Now that has to be specially ordered in for her and will take at least 10 days. I was told if this was the case, to get back in contact with the consultant. Can I get hold of his Secretary? Not a hope in that fiery place! Left voicemail to get her to contact me back but nothing.
So I need to get a prescription for Ibuprofen from the GP, so I call them and our GP has now gone on holiday for 3 weeks! So I can't get him to write the prescription. Can't get a phone appointment with any other doctor as they are far too busy today apparently. Means I have to call at 8.30 tomorrow in the hope of getting one then.
Vitamin D blood results not back yet. God knows when that will be.
All in all a complete nightmare today. Can I just go back to bed and start again??
Girlie needs a referral for opthamology to have her eyes tested. Now her consultant and opthamology are in the same building of the hospital, but it still hasn't been sent yet.
She needs a Naproxen Suspension (NSAID) to see if that will help control swelling of joints. Now that has to be specially ordered in for her and will take at least 10 days. I was told if this was the case, to get back in contact with the consultant. Can I get hold of his Secretary? Not a hope in that fiery place! Left voicemail to get her to contact me back but nothing.
So I need to get a prescription for Ibuprofen from the GP, so I call them and our GP has now gone on holiday for 3 weeks! So I can't get him to write the prescription. Can't get a phone appointment with any other doctor as they are far too busy today apparently. Means I have to call at 8.30 tomorrow in the hope of getting one then.
Vitamin D blood results not back yet. God knows when that will be.
All in all a complete nightmare today. Can I just go back to bed and start again??
Sunday 24 February 2013
About Me...
Thought I should do a proper introduction.
I am a 25 year old, mother of two :) I am married, and have been for the past 5 years, been with hubby for 7 (get less for murder these days lol)
I read... A LOT, my best ever present was my KOBO Touch. It rarely leaves my hands once the kiddies are in bed. I read in the bath, in bed, whilst eating and too many more places to mention. I will attempt to read anything. I have eclectic taste when it comes to books.
Few of My Faves:
I am a 25 year old, mother of two :) I am married, and have been for the past 5 years, been with hubby for 7 (get less for murder these days lol)
I read... A LOT, my best ever present was my KOBO Touch. It rarely leaves my hands once the kiddies are in bed. I read in the bath, in bed, whilst eating and too many more places to mention. I will attempt to read anything. I have eclectic taste when it comes to books.
Few of My Faves:
- Twilight (Yes I know)
- Harry Potter
- Fifty Shades (Not the sex, I actually like the story lol)
- Beautiful Creatures Series (most recent read)
- The Kingkiller Chronicles
- Anything Crime
- Stephen King (Green Mile my all time fave)
I am reading Pandemonium at the moment by Lauren Oliver. I'm only a few chapters in but already hooked :)
I love music, life would be so boring without it. Kiddies and I love nothing better than dancing round the living room to cheesy pop.
Vampires :) hubby hates Twilight, I love it. "Vampires don't glisten, they go "poof"" according to him. Although don't get me wrong, I love Blade, Underworld etc.
Zombie films are my passion, love them!!! Seen most of them and watch them regularly. Another thing to drive Husband crazy.
So that's a little more about me :D
Friday 22 February 2013
Well...
We had blood tests :( lots of tears and an epic temper tantrum, understandable really. However, they have also tested her for Vitamin D, as according to the Consultant her bones are "thin"
Not sure what this means at the moment, but I shall be phoning for blood results over the weekend to see what they say.
They're testing her ESR again, last result was 70, so be interesting to see what it is at now with another two joints flaring.
We did have a lovely afternoon though, Girlie was totally spoilt with a Burger King and a Tree Fu Tom DVD
She's so brave, just taking it all in her stride bless her xx
Not sure what this means at the moment, but I shall be phoning for blood results over the weekend to see what they say.
They're testing her ESR again, last result was 70, so be interesting to see what it is at now with another two joints flaring.
We did have a lovely afternoon though, Girlie was totally spoilt with a Burger King and a Tree Fu Tom DVD
She's so brave, just taking it all in her stride bless her xx
Can't Sleep
Blood tests in the morning. I don't sleep very well before hospital visits, so thought I would introduce us a little more.
Girlie: now, what can i say about her? She's just turned 3. She has blonde hair and blue eyes. We call her Moos. She's funny, argumentative, stubborn, excitable, food orientated, strong willed and beautiful!! We love her dearly! Even when she's a complete pain in the backside. Which is a lot :)
Boy: Not mentioned boy here yet. He's 15 months, cute and chubby, a proper boy! Messy, noisy, destructive and hilariously funny at times. Although has a wicked stubborn streak like his sister :)
Me: The (in)sanest of us all. The glue that holds things together. 25 (feel about 50) years old, full time mum and insomniac. Hence why I am wittering on at 12.40am.
Hubby: boring old fart lol but for whatever reason we love him. Usually working, unless we have a hospital visit.
So... That's us. Your average family just trying to get on with the hand we've been dealt in life.
You don't need to be crazy to live here, but it helps lol
Night x
Thursday 21 February 2013
:(
pretty much sums up how I feel today. Seems like we've been dumped with this diagnosis and then been left to wade through it all by ourselves.
No support has been offered by anyone and I'm now starting to feel a little overwhelmed by it all. I have no idea who is out there that we can discuss it all with and I feel like I'm being pulled under by the stress of it all. It would be nice if there was someone out there to just say "you're not on your own, there are people out there who can help"
At the moment we are just doing it all alone...
No support has been offered by anyone and I'm now starting to feel a little overwhelmed by it all. I have no idea who is out there that we can discuss it all with and I feel like I'm being pulled under by the stress of it all. It would be nice if there was someone out there to just say "you're not on your own, there are people out there who can help"
At the moment we are just doing it all alone...
Wednesday 20 February 2013
Official Diagnosis...sort of
Well, finally got some sense out of the consultant!! Girlie has Oglioarticular Juvenile Idiopathic Arthritis. Although this will probably change as she has more joints affected. 4 or under is Oglioarticular, 5 or more is Polyarticular. We are on joint 5 as her elbow has flared in the last couple of days.
She has been referred to an opthamologist as her eyes will need testing regularly as it can affect the fluid in the eyes (uveitis).
We actually see Consultant on 19th March at Rheumatology Clinic, and will have a greater idea of where we are going with the diagnosis and what we can do to help her manage it.
We are getting new NSAIDs to try and combat the swelling as general Ibuprofen is not reducing it enough and longer the joints are swollen, the more risk of permanant damage. So hopefully the Naproxen is going to help, if not we have to keep going until we find something that does.
So I guess for now, we just have to carry on as we are and see what happens. I am not very good at this whole waiting thing, which is why I get so frustrated having to wait for everything.
Bloods on Friday morning to see what her ESR, and ANA looks like. More chasing the hospital next week for blood results then...
Oh the Joys!!!
She has been referred to an opthamologist as her eyes will need testing regularly as it can affect the fluid in the eyes (uveitis).
We actually see Consultant on 19th March at Rheumatology Clinic, and will have a greater idea of where we are going with the diagnosis and what we can do to help her manage it.
We are getting new NSAIDs to try and combat the swelling as general Ibuprofen is not reducing it enough and longer the joints are swollen, the more risk of permanant damage. So hopefully the Naproxen is going to help, if not we have to keep going until we find something that does.
So I guess for now, we just have to carry on as we are and see what happens. I am not very good at this whole waiting thing, which is why I get so frustrated having to wait for everything.
Bloods on Friday morning to see what her ESR, and ANA looks like. More chasing the hospital next week for blood results then...
Oh the Joys!!!
Monday 18 February 2013
Normality....??
Girlie has to go in for more blood tests on Friday :( Not looking forward to that one, although she thinks it's great as she can go and play in the play room.
Hoping and praying today that somebody decides to cancel their appointment for Rheumatology Clinic tomorrow so that she can get the space. Selfish I know, but I really need to discuss the medication with the consultant and at least see if there is any sign of a prognosis. The waiting is driving me insane.
We had a lovely weekend at home, and girlie was in fine form yesterday, with smiles and giggles. Was really nice just to have a family day at home with no rushing around.
Looks like more joints may be beginning to flare though which is a bad sign, elbows are both looking a little larger than normal and her other wrist is beginning to look dodgy :( I don't think this is gonna get better any time soon. Just need to wait and see.
I HATE WAITING!
Hoping and praying today that somebody decides to cancel their appointment for Rheumatology Clinic tomorrow so that she can get the space. Selfish I know, but I really need to discuss the medication with the consultant and at least see if there is any sign of a prognosis. The waiting is driving me insane.
We had a lovely weekend at home, and girlie was in fine form yesterday, with smiles and giggles. Was really nice just to have a family day at home with no rushing around.
Looks like more joints may be beginning to flare though which is a bad sign, elbows are both looking a little larger than normal and her other wrist is beginning to look dodgy :( I don't think this is gonna get better any time soon. Just need to wait and see.
I HATE WAITING!
Sunday 17 February 2013
Thursday 14 February 2013
Mixed Emotions...
Well it's girlie's 3rd birthday today! I was so looking forward to this before diagnosis. Now it's here, I feel teary and emotional. It's hard knowing that she may have had her last "normal" birthday. We had another joint flare up yesterday, so we are now on four joints that are affected. Right ankle and knee, left wrist and a finger on her right hand.
Got hold of the consultant finally too. Her appointment is the 19th March. So another month before we know where we are going and how best to treat her condition. I understand that there are other children with it too, but seriously, over a month before she sees her consultant is a little extreme. Especially as she is on high doses of NSAIDS to try and reduce the amount of inflammation. As the new joint has flared, she's now on DOUBLE the recommended dose! And they expect me to keep her on that for a month?
I don't know, I just feel so helpless as I don't know what to do to make this better. As a parent, that is what I am supposed to do. But it's now been taken out of my hands and I can't do a great deal about it. This is going to be a very drawn out process and the idea that it could get worse is scary!
Happy Birthday Baby Girl, Mummy loves you no matter what!
Got hold of the consultant finally too. Her appointment is the 19th March. So another month before we know where we are going and how best to treat her condition. I understand that there are other children with it too, but seriously, over a month before she sees her consultant is a little extreme. Especially as she is on high doses of NSAIDS to try and reduce the amount of inflammation. As the new joint has flared, she's now on DOUBLE the recommended dose! And they expect me to keep her on that for a month?
I don't know, I just feel so helpless as I don't know what to do to make this better. As a parent, that is what I am supposed to do. But it's now been taken out of my hands and I can't do a great deal about it. This is going to be a very drawn out process and the idea that it could get worse is scary!
Happy Birthday Baby Girl, Mummy loves you no matter what!
Tuesday 12 February 2013
Introduction
Hi and welcome to the blog!
I decided to start this as it would give me a place to jot down all the feelings and stress, so I don't end up exploding into some sort of emotional mess!
My daughter (2 years and 11 months) has just been diagnosed with JIA. Juvenile Idiopathic Arthritis. I never even realised kids could get it to be honest. So to have this heaped onto us was a big deal. It's still early days yet so we have no idea of what it is going to hold for her in the future.
Waiting on an appointment with a Consultant in Rheumatology to get a better idea of what is going to happen, how to treat it and whether it will be long term or not.
So this is just the start of a long journey for us!
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