Our Happy Conor is Back! And Dad Is Happy Too!

The top photo above was taken a year and a half ago,  shortly after Conor recoved from a very serious adverse reaction to his seizure med at the time, Lamtrogine, which resulted in two weeks in the hospital including an emergency room visit and 6 days in the ICU where the excellent medical team there, including our family doctor, probably saved his life. 

The second  picture above was taken a few months ago, shortly after Conor started a second medication, Divalproex, after which he became agitated.  I was able to get him outdoors walking at the time which seemed to help. I second guessed myself at that time and continued with the Divalproex despite increased agitation.  A number of weeks ago Conor's Divalproex was increased as per the Neurologist's direction and things have been brutal for Conor since then.  I had to bring him home from school twice because he was aggressive with staff.  He was very aggressive at home with his mother and with me.  He was most aggressive though with himself smashing his head with both hands dozens of times a day.

A week ago I began decreasing Conor's Divalproex meds and he has been off of that medication entirely for a few days.  The result has been positive with his aggression and self injurious behavior dropping sharply and the last couple of days being joyful again.

I am not criticizing the Neurologist, nor am I making a generalization about Divalproex or offering

medical advice.  All I am saying is while on Divalproex Conor suffered with increased Divalproex resulting in increased self injurious behavior and aggression.  The school staff were kept in touch about the medication issue and the withdrawal schedule and noticed the same patterns including the recent return of our joyful, happy Conor.   I won't jump to any big conclusions or assume things will never get bad again but I will say that .... today ... Conor's Dad is one happy camper.

Conor Goes For A Swim (and a Dive and a Slide) and Shows Terrific Progress In His Rhabdomyolysis Recovery

Conor home after a great swim adventure;

making terrific progress on his recovery

Conor's autism and profound developmental delay were supplemented by two grand mal seizures between November 2012 and April 2013.  The second seizure occurred two days after he began treatment with the anti seizure medication Lamotrogine.  During the second week of treatment when his dosage was increased from 1 to 2 25 mg tablets a day he began to sleep and medical advice was sought.  The specialists were not available quickly but our family doctor saw us early the next day and advised us to cut back on the dosage which we did.  Later that day though Conor still developed a rash and temperature and went to the emergency ward of the local hospital, the DECH.  He spent 6 days in the Intensive Care Unit and two weeks altogether in the hospital.  Conor's adverse reaction to his medication was diagnosed as Rhabdomyolysis a condition in which the muscles break down and release substances which pose great risk to the kidneys.  But Conor received excellent medical attention and was released to come home where he has continued to make made great progress.

We would like to take some credit for Conor's great recovery but the truth is he has led with his own initiative. Conor was jumping up off the couch even before he had his balance and we had to keep a close watch on him. This week Conor returned to school for part days.  His mobility and balance improved dramatically each day and this morning he went swimming at school for the first time since his hospital stay.  The plan was for Conor to go to the pool and sit in the hot tub.  Conor had none of that.  His aide informs us that instead  Conor walked down the accessibility ramp into the shallow end of the pool. He subsequently went to the  diving board where he jumped into the deep end and swam like a fish.  Conor also made for the giant slide where he climbed to the top and slid down.   

I couldn't have asked for a better present then to learn about Conor's swim adventure today.  6 days in the ICU with 5-6 tubes at a time sticking out of my buddy Conor seem  like a bad dream today.  Our Run Jump Fly Boy was flying today and we are happy, very happy.

Conor's Physiotherapy With CBC's Terry Seguin

Conor is still recovering from Rhabdomyolysis, an adverse reaction to anti-seizure medication, Lamotrogine and needs phsyiotherapy to rebuild his damaged muscles, balance and co-ordination.  Just being home is a huge help for Conor, back home with Mom, Dad, his brother and his familiar routines.  One of those routines has been to get out of bed every morning at 6 am.  If he is awake at 5:30 he stays in bed until 6. That is his routine and Conor has a classic autism need for routine.  When he gets up each morning his routine has also included turning on the television and watching  "CBC Terry Seguin".   

Conor has been sleeping on a living room couch since his return so I could be nearby on our other couch to keep an eye on him in case he was in distress. This morning I was in the adjacent kitchen when I heard some loud walking noises in the living room and went in to find that Conor had walked from the living room to the television to turn on CBC Terry Seguin.  Conor has been very wobbly on his feet and he has a long way to go towards recovery so I was startled to see him at our big screen TV.  I was happy though that he had done so without falling and hurting himself. It was a sure sign of progress in his recovery.  His CBC Terry Seguin television walk demonstrated improvement physically and showed that Conor will not stay down, he will keep walking until he is fully recovered.  Two thumbs up for Conor ... and for Terry Seguin!

Conor Is Home From the Hospital!

Above Conor, and Mom, in the bottom pic,  on the way home.

Conor's Mom stayed at the hospital with him 24/7,  for 2 weeks

Dad spelled her off at times and the nursing students also sat

with Conor and gave Mom some breaks once he was moved

from the Intensive Care Unit to a room in Pediatrics.

In the grainy pic below (taken in dark lighting) Conor rests

at home on one of our living room cozy couches.

Conor is home! After 2 weeks in the hospital, including 6 days in intensive care, it feels great to have our buddy home with us. Yesterday I told Conor I would be back at 8 am this morning to take him home.  I arrived at 7:55 am and Conor Was waiting in the door way of his room ready to go home.

We really didn't know for the first few days if he would survive.  His negative reaction to the anti-seizure medication Lamotrogine resulted in a condition called Rhabdomyolysis which is as bad as it sounds.  Essentially, as I understand it the muscles break down and can cause renal (kidney) failure.

Conor is home now, safe and healthy. We all have lots of work ahead doing phsyio  with Conor as he recovers strength and coordination. Conor has shown substantial improvement each of the last several days and we are very optimistic that our Run, Jump, Fly boy will be back before too long. 

There are many, many people to thank for Conor's well being today. There are literally so many: all the hospital medical, nursing and support staff, our family doctor, people who know and work with Conor at school who visited with him in the hospital,  family friends and Conor's brother Brandon who was a big help at home and at the hospital on visits. 

We are happy, very, very happy to have our buddy home with us. Today is a great day in the Doherty home.

Conor Is Safe Now But We Almost Lost Our Buddy: THANK YOU To ALL Who Saved Him!

In mid-April, pursuant to a neurologist's advice, we started Conor on Lamotrogine, an anti-eleptic drug which is reputed to have benefited many people suffering from seizure activity.  Hours after receiving his third dosage Conor suffered his second Grand Mal seizure, that we know of, since his first in November 2012.  Last week he became extremely drowsy and last Friday April 26, 2013, our family doctor recommended we reduce the dosage (the neurologist is out of town until May 13, 2013). Later, early Friday evening Conor's condition worsened noticeably and a rash had developed.  Rash development is a known warning sign of a negative Lamotrogine reaction and Conor was taken to the DECH (Doctor Everett Chalmers Hospital) emergency where he received immediate attention and transferred to the Intensive Care Unit, the ICU.  Conor's reactions have been very serious with risks in several key categories including risk to his kidneys and liver. Thanks to our family doctor and the excellent care and attention of the Emergency and ICU personnel our Buddy is still with us. Without their help he probably would not be.  Conor is still in the ICU but is expected to transfer to pediatrics in the next day or two. He has improved dramatically.  

To everyone involved with protecting and saving our buddy Conor his Mom and Dad say THANK YOU VERY MUCH, THANK YOU!

PS. We can hardly wait for the phsyio and other necessary recovery interventions to give us back our Run, Jump, Fly Boy: