Living with a diagnosis

Hi Hollowers!

Thanks for joining me again today, so many of you have asked what has been happening with Maddi, it fills ours hearts to know how many of you care so much about her.  Maddi’s diagnosis is complicated so I will start today with something she has been living with for a long time.  We have this part of her condition well controlled (thankfully), over the coming weeks and months I will continue to share more about her whole diagnosis and how we are dealing with it both in treatment and as part of our daily life.  I also know we are not alone.  Having your child diagnosed with any disease or illness whether it is short term or like Maddi more likely to be life-long is devastating.  No parent wants to see their child be ill, in pain or have any limitations placed upon their life; we each want a happy and healthy child who can live life to the full.  I also know how fortunate we are to have a relatively mild case that is well controlled and the majority of the time your wouldn’t know she had any impediment.

When Maddi was only 3 years old her right thumb was swollen, something that Grandma noticed before we did, (the guilt of that never goes away), then her knee started to swell, it was bent all the time and we couldn’t straighten it, I took her to see our British primary care, he told me to give children’s Tylenol and ibuprofen, he also told us to make her straighten it.  These medications did nothing, she was struggling in Kindergarten, travelling around the school by stroller and the screams were blood curdling when we tried to straighten it, I took her back to the doctor two or three times each time being dismissed as a neurotic parent!  Eventually I took her to the ER in Oxford, they has a children’s ER and it was part of Oxford University so I knew if there was something they would find it.  We were immediately quarantined as it being part of a rare cases of meningitis, those were the most frightening 3 hours of my life, until the senior consultant came in, he took one look at her and said she has JIA.  An acronym we weren’t aware of our hearts sunk, until he explained it is a juvenile arthritis, it could be treated, we wouldn’t know the long term prognosis until we saw the specialist the following week, but we had hope.

After a week of googling and wishing the days away we saw the most amazing consultant ‘Mr Wilkinson’, I owe this man everything as he gave us the full diagnosis, Maddi was fortunate to have non-rheumatoid poly articular JIA, poly-articular meaning of multiple joints, but we were lucky with no rheumatoid factor as the joints were unlikely to be damaged, she also had no signs in her yes, all the signs were great.  He put us on his operating list and two weeks later we were there in day surgery for steroid injections into her joints.  This seemed to be a miracle cure! We went in with a child who could barely move let alone walk, she was crying with constant pain, she came back groggy and lethargic, I will never forget the moment they put her to sleep in my arms I cried all the way back to her bed, however after the longest hour of my life they came back to get me as she was in recovery, we took her home and the next morning we awoke to Maddi running into our room and jumping all over the bed, I just cried with relief, we had our happy and playful little girl back!

We were injecting her on a weekly basis with Methotrexate, an immunosuppressant, she was very lucky to have no side effects, she did get every bug going and we had chicken pox a whopping 6 times even after 2 vaccinations!  After 2 years we had no more flare ups and she was well controlled; no issues with her liver function, we had been so fortunate.  Mr Wilkinson gave us the news we could ween her off the Methotrexate, what amazing news.  We managed 9 months off the methotrexate before we have a flare up, but again we went through the cycle of steroid injections and everything settled back down.  It was another 9 months and we had a doozy of a flare up! 27 joints! Yikes! I remember sitting there almost glazed over as the consultant started talking to me, by this time Mr Wilkinson had moved to London and we had a different lady, someone who whilst clinically excellent had zero bedside manor especially with children.  She told us due to the number of joints involved we needed steroid infusions, followed but injections into any joints that weren’t receptive to the infusion.  We went to the local hospital for 3 hours every day for a week, Maddi has a butterfly left in for the week, a stent to keep her arm straight, she was in alot of pain from the flare up plus all this as well, I felt so helpless as a parent; we got through the other side and back onto Methotrexate which was not available in an Epi-Pen style, this was so much better, you don’t see the needle, it is all automatic, it took so much trauma away.

Roll on another 2 years and we were symptom free, again they let us ween off, this time we got a whopping 14 months symptom free and the flare up was small, only the thumb, one finger and her knee.  By this time I had taken the decision to move to another hospital as I wan’t happy with the new clinical team and Maddi feeling comfortable with her team was so important as we see them so regularly.  The team were great, it was right in the middle of us moving to America (not great timing!), they got us in for the surgery within a week and even helped us research specialists in Ohio.  They did a great job of getting her symptom free, back on Methotrexate and did an amazing job of transferring her care seamlessly.

So here we are 6 years on, we now know exactly how to deal with things.  She is naturally stiffer and a little more sore in the winter months but Methotrexate, some occasional Tylenol and ibuprofen seems to keep her in check.  There is an Olympic bob-sled athlete who has JIA so it does not need to limit you.  Maddi, like me has never been an athlete and as long as she can ride her horses she is happy.

If you have a child who is in pain, trust your instincts.  I have learnt this numerous times with Maddi.  If in doubt take them to a specialist or a local children’s ER for answers; I am a lot more stubborn these days when I know something is wrong.  It is so important for a child with JIA to have regular care and a team of people they feel comfortable with, I am so pleased I moved to another specialist, it wasn’t easy as England is a free health service and whilst I was grateful for all the help we got free of charge I wish I had moved earlier and I had to be very persistent to get us moved.  it is equally as important to get them checked regularly at an ophthalmologist as JIA can affect the eyes and can also progress quickly in this area.  Finally, if you decide methotrexate is for you do not skip the blood monitoring, we have had a couple of bad tests in the past 6 years but they are easily dealt with, however, if they hadn’t been caught the results could be devastating.

Finally, I have done lots of reading and research on JIA, my mother had Crohn’s which is considered to be a similar defect, I have Psoriasis (although this was only diagnosed last year), again a similar type of disease and I have also been tested for Lupus, another autoimmune disease on the same gene.  When we had Tilly we did lots of research and it’s thought that it’s highly unlikely to transfer to siblings.  I also thought I would mention that Maddi has been asked to participate in a study on saliva, they think that they can predict JIA from a simple mouth swab, this would help so many children be cared for before the symptoms progress or damage becomes irreversible.

If you have any questions I am always here to listen.  I accept how fortunate we have been and I am thankful everyday Maddi hasn’t suffered as much as many of the children I see in clinic.  I am also very thankful for how well controlled we are.  This is by no means all Maddi has to deal with, but I had to start somewhere and I will continue to write about my experiences as a parent with a child who has medical complications.  I am always here as a listening ear for parents who have a new JIA diagnosis and I am more than happy to point you in the direction of some great resources.  The longevity of her condition is unknown.  Some children grow out of it, others don’t.  If we can reach 2 years in remission we are statistically only 2% likely of a relapse.

Thank you for taking such an interest in Maddi and our family; we feel so blessed and loved to have you all.