Neuroreorganization

I haven't posted an update about the progress in our Neuro program. We became diverted with Ethan's pain and doctors appointments.
 So we went to Dallas and met with the practitioner who evaluated Zach. He is missing a good deal of his prenatal and 1st year "reflexes" that develop in normal growing children. This is not as we assume he was prenatally exposed and it was a stressful pregnancy. Then he spent the first 18months in a Russian hospital and two different orphanages. Yuck.
  The practitioner, Emily, gave a list of several exercises to do twice a day along with several sensory related tasks. These tasks are things like brushing the skin, spinning around or log rolling, bear hugs and firm pressure, use of a vibrator on the spine. Then there is the crawling and creeping.
  Want to see something freaky.....watch a child with neuro issues crawl. Tell them that the only rule is that they keep their belly button to the ground. They can use any part of their body that they want but the belly button has to stay on the ground. I thought no big deal, anyone can do that. Uh Hum ....I was so wrong.
        For the first 10 days or so times Zach tried to crawl he looked as though his legs were paralyzed. It was totally bizarre. He was dragging himself forward with both arms at the same time with his legs stiff as a board. Then the legs went up in a bent position. Now after about 30 days he still hasn't figured out how to move his body to go forward like an infant would. It is much more of an army crawl using only the left arm and right leg. This is apparently "normal" for the abnormal child. Say that three times over. ha ha ha
   The theory is that he missed the "crawling" due to confinement and neglect therefore could not develop the brain pathways that a crawling child would make. In turn he missed learning everything one learns from propelling ones body forward, looking side to side, moving in sync. We are hoping that by recreating these movements he can recreate the neuropathways.
  The other sensory things and "patterns" also recreate what the body missed by being neglected. Being held, sound and vibration from being rocked or spoken to while feeding was taking place.

Is it working??? If I had to say yes or now I would say no not yet. Although it is odd in that we can see he is less able to control his temper on days he doesn't do his program. He is sleeping better. He is able to coordinate left to right better too. It has not touched his impulse control at all. So sad. Well maybe by this time next year we can see growth in that area.
   

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.