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.