Wednesday, July 30, 2014

Tips for appointments.....especially the first one

A parent for the UK posted this list of TIPS on Facebook from a UK Rheumtologist.  This list is awesome.  I have actually had discussions with our pediatrician about filming Trevor with the ipad to show how he "really" acts- trying to disprove amplified pain syndrome (i.e. Not depressed or bullied,etc).    Also our rheumatologist always laughs about the girls that come to their 2nd and 3rd appointments in skinny jeans.  Poor things have to put on gowns.  This list is great!   I wish I had it for our first appointment!

• Make a list, in chronological order, of your child’s symptoms to take to the appoint as this can be enormously helpful for the doctor.

• Take a photograph and/or a video of your child’s skin rash, joint swellings, difficulty while performing any activities like walking, running, going up or down the stairs, struggling with writing etc. on your smart phone or camera and bring this to the appointment.  

• Talk to your child about going to see the doctor and tell them the doctor will want to examine them and explain to them what this means.  This will help to prepare your child for the examination and also help the doctor.

• Bring any medicines or list of medications to the appointment your child has been taking. 

• Dress your child for the appointment in such a way the doctor can examine all the joints, taking care the clothes do not hinder the movement of the shoulder and the hips during examination.  Loose shorts and vest/T-shirts are ideal for all boys and girls of any age, either to bring or wear under their regular clothing.

• Let the doctor know if your child has sustained any injuries before the start of the examination.

• Tell the doctor of any other investigations that are planned for your child with another doctor/speciality although, the diagnosis for JIA (in the US you refer to it as JA) depends mostly on the history taking and examination.

• If you have a diary or can use the diary on your phone/iPad this helps for planning future appointments and investigations whilst you are with the doctor.

• Don’t be afraid or embarrassed to take notes during the appointment about what the doctor tells you and contact details of the relevant health professionals.

• Start a folder with all the relevant documents regarding your child filed in order.  This helps you to remember appointments and what happened when and who you saw and can also be a handy reference for doctor and the other members of the health care team looking after your child because it provides a good continuity of care between the various health professionals.

Wednesday, July 16, 2014

And our hope continues

Just a short post today!  Trevor seems to continue to improve with the Humira.  I have noticed if he "over does it" he will still hurt but it only seems to last a day not 3 or 4 like before.  This is amazing!  I must say when I take a step back and think.... 2 1/2 years ago I would have never imagined our family dealing with this life.  I would have never fathomed my son dealing with this amount of pain and really losing the child that he was and I would have Never thought that ME, the girl that used to pass out at the sight of the dot where the shot was given, could ever give someone, especially her own child a shot would be where we are today!  Life sure is full of surprises!!  I had almost given up hope.  I had almost thought there was really nothing that was going to help him.  I am gradually starting to see "my Trevor" come back.  He talks a lot more, he jokes more, I know he will forever be changed, I just just pray he gets to live a little of his childhood!  God is good.
We went scalloping and Trevor was the best by far.  But after two days, he was beat.  But it was a GREAT two days!!

Thursday, July 10, 2014

And Humira begins

We began Humira on June 11, 2014.  Even though I had given the Enbrel shot before, it had been awhile and we had heard Humira burns!  Well it did burn and he cried. I cried and felt horrible.  He said the needle did not hurt, just the medicine going in his leg.  If it works, it will all be worth it though!  He had one day of relief after the shot.  :(

2nd shot-  I did better on administering it but it still burned.  The burning only lasts a little while and he knows what to expect now.  After this shot he seemed to have many more better days then worse days.  We are so hopeful now!!!

I gave him the 3rd shot tonight.  It seemed to go much better.  It still burned but he tolerated it much better.  He knows that it is making him feel better.  He even made the comment to me the other day that he would much rather get a shot then have to the pills.  Go figure...this is definitely not the same child I had 2 years ago.

I hope and pray that he will be able to play sports and get back to being active again with friends.