Update on Troy

[troysmom]

April 28th will be one year that Troy has been taken minocycline.  It was a rough start and there were times that all we could do was wait and it didn't feel like we could 'afford the investment of time' that this treatment can require.  Troy has shown gradual improvements, living with chronic illness teaches you to take nothing for granted, sometimes the smallest victories can bring you the greatest joys, for example for the first time in years my son can now put on his own socks.  The joy we all felt for something so small, yet for him it was a huge stride.

Since last October our rheumatologist ahs been trying to get our insurance companies to cover the cost of Rituximab, we finally won the appeal two weeks ago, Troy will have his first treatment on April 21st.  Althought he has been able to make improvements with the minocycline he continues to live with limitations everyday, we have tried all the other current medications and for now this is our last one to try, god willing science and medication continue to advance and provide us with more opportunities in the future.  There is a very good chance this medication will not do anything for Troy but the HOPE is that it will, others with Dermatomyositis have had success.  We hope to be one of them.  We should know by the end of May if it works so I will let you all know.

We also find out today that Troy has been approved to receive a granted wish from the Make of Wish Foundation, Troy was refered by his rheumatologist, I had always thought it was just for children with life threatening illness, but I found out it is for any child who has a long journey with health problems that effect the quality of their life.  We have just started the process and I am looking forward to seeing it unfold, I will keep you updated on that as well.

May you all continue to take care of yourselves and thank you to so many of you who keeps Troy in your thoughts.

Vanessa

I will try and update his photo, the current one is a couple of years old.

[Eggs]

I've never written before, but I have always read your posts and updates on your son. I was just thinking about you two last night and want you to know you are in my prayers. Troy is an amazing young man and you are an amazing mother. Hang in there and I am so happy to read of Troy's improvements.

Hugs!:blush:

[Trudi]

Hi Vanessa–

Thanks for the update; I hope the new medication works for Troy.  I am excited for Troy and the Make A Wish Foundation–looking forward to hearing about his wish–

You are both in my prayers–

Trudi 

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Author]

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