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

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

Facebook...

To all our readers,

We have a facebook page. Feel free to like and share :)

http://www.facebook.com/ImogensArthritisJourney

x

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!

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

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!

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

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 :(

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

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!

Kiddies xx

Thought it might be about time I showed you what my gorgeous children looked like :)

Something I have written for Consultant

Day to Day Differences in Imogen

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?

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!!

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

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 :)

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.

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.