Somethings working with arthritis medication

April showers bring May flowers. Well we hope so. 

We did start Ethan on all the new medications. His eyes have not been affected by the arthritis. He will have a check every 6 months for life apparently. His pain did finally start to decrease and he is only using the stroller on longer trips now. His energy level is increasing but still not ready for full days at school yet. 

We went back to the Rheumatologist in mid April and he is seeing the medication taking hold now. His joints are no longer warm but are cooler to touch and have less swelling. He did however increase the methotrexate in hopes that we can stop the inflammation all together. If the pain is pretty much gone on the next visit in 6 weeks he can start physical therapy and occupational therapy then. Although it saddens me to see some of his joints, although not very painful, limited in full range of motion. The doctor thinks that he will not be disabled but always have some limits in range. So he won't be a baseball star but we never thought that was his lot in life anyway. 

The Kansas City Zoo

                                                                             
                                                         Ride home from Kansas City Zoo!!!

What a month...Arthritis

I had not posted it but Ethan, over the past year has become progressively stiffer, had a hand surgery and has become more painful in his joints. After a series of doctor hopping he saw a Pediatric Rheumatologist who within a really shot visit told me Ethan has Polyarticular Juvenile Idiopathic Arthritis.
       We had seen Ethans Pediatrician, Hand Surgeon, Endocrinologist and was referred to Orthopedics inititally. Ortho declined to see us and referred to Rheumatology. Through the series of visits to the other doctors he has had multiple x rays, a lot of blood work and a bone scan. So by the time we got to the Rheumy other things were ruled out. Dr. H. looked at the way Ethan moved and looked at his joints. Then in no uncertain terms told us what it was. I had a feeling that this was the problem but was hoping I might be an over anxious mom.
      Unfortunately though by the time it was diagnosed Ethan's joints have multiple contractures and limited mobility. This is also the reason he has progressively become less active and fatigued the last 6 months or so.  Apparently it is very common for children not to be diagnosed with JIA for a very long time as Pediatricians are not really trained to pick up on it easily. That reason and there are only about 300 pediatric Rheumatologist in the US. No I am not kidding. 300 of them for 300,000 kids with arthritis.
    So Ethan was started on Naprosin which was not effective at all yet. The pain and fatigue became so bad that he was unable to walk much in the mornings. On rainy days he has a really hard time with all tasks. After the pain and immobility got a little intense Dr. H put him on Prednisone and a chemo drug called Methotrexate. Well Kaboom. The Prednisone worked almost immediately. He feels a bunch better although still in pain it is manageable. He even went to school yesterday afternoon. Which he hadn't done in three weeks. Today he is home with pain but he was super happy to get back to school yesterday. The Methotrexate will kick in about 4 - 6 weeks from starting it. Then we will wean off the Prednisone.
   After the pain and swelling get under control then he can start on physical and occupational therapy.


    

24 hour miracle

  OK well not that great but since starting to apply certain methods we learned the two boys who always woke at 5am everyday slept until 8am the first day home, 7am today.

   Today when one of the boys became obviously threatened by a misunderstanding of words I was able to resolve it with him. He came back to "the scene of the crime" willingly and redid the offence in a respectful way.  You see he is still learning English after 2 years in America and has not moved out of the easy fight or flight response. He only hears about half of what we say and feels so threatened and unsafe by anyone who cares for him . He takes many things, on a daily basis out of context and then stomps off angry at the world. He is rarely ever able to rejoin the group for a long time as he holds on to the anger and can't let go of the fear.He is the one who is snarky, snotty and disrespectful on a daily basis. I can not remember one day, no exageration, in the past two years in which he hasn't been disrespectful.
 
Today he was crabby and disrespectful but went back and made it right. This is absolutely amazing. Ok ok I know that we haven't slain the fear demon yet but it felt wonderful to lead him from anger to safety today.

The adoption journey starts when the child comes home.

  I spent half of last night thinking about that statement. Instead of sleeping that is.  I heard it at the ETC conference this past weekend and it was one of the many phrases that made a lot of sense to me.

  The waiting, paperwork, looking at photos and even the travel to meet your child is just a memory when you get your child home. That is where the real journey begins.