Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips
MRI of his spine
X-ray of his chest
CAT Scan of his brain
CAT Scan of his chest
MRI of his chest
MRI of his hips
Numerous Blood Work
Spinal Tap
and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010
-Juvenile Dermatomyositis (JDM)-

Hope

Hope

Wednesday, September 5, 2012

A tough Day at School for Connor Bear ...

I am going to take the easy way today and just copy down all the happening that went on today from my FB Postings.

The support has been amazing and I know Connor took huge comfort in your messages. Thank You!!!

I did remove the names of the postings to protect your privacy, so hope this is okay!

So here is went:


Connor is having a hard time at school. He is begging me to just home school all the time. Heartbreaking and one more reason why we need a CURE!




Poor guy! I hope he feels better soon. Brielle always has a bad time at the start of each school year, so hard to adjust to new teachers and friends. When she was younger, she came home every day for the first few weeks and built a blanket tent in the livingroom. I guess just needed a place to decompress. I finally bought one of those canopies and put it over her bed so she had a nice place to hide.

 ‎:( HUGS! We like you Connor!

 how come other children do not like him?

Anke Smith Great idea!
I think he is just feeling sad and takes little things to heart. He feels he can't play with other kids who run a lot at recess. Everything us just more emotional for him right now :'(


 Please tell Connor that we all LOVE him!!!

 I can relate here.....poor little guy. That makes me sad!!

Difficult to be up emotionally when you are down physically, isn't it. Makes everything seem more difficult and overwhelming

Poor little lamb :( Give him big Nana hugs for me ♥ ♥

That hurts my heart. Give Connor a big hug from me.

Well that breaks my heart and made me cry. Your poor little guy. I wish I could give him a big hug. These poor kids have gone through so much to not be accepted for something out of your control is just heart wrenching. Love and hugs to you both.

 ‎:(

 Oh this is sad :( tell my brother I love him

Aww... We love you Connor. Sorry you are having such a rough time :(

Poor kiddo :(

I can't imagine why anyone wouldn't like him, he's so sweet. I hope it gets better soon. If it makes you feel any better, I never had very many friends in school either. One good one is all all you really need. Hope he can find a little soul mate.

poor guy....it is heart-breaking. This is such a difficult parenting situation. How do you decide the best way to help him navigate these feelings? Seeing our kids in pain either physical or emotional is so hard!

Conner: you walk in there, chin high and chest stuck out and tell them you are there to learn and get educated so that you can get a good job and that you know deep down they are jealous and that's why they act mean to you. You are the strongest young man I know. You are stronger than a lot of big men I know who complain about silly things. Dont let jealous kids stand in your way of your future. You rock Conner! We are prayin for you!

 ‎:(

This just breaks my heart. How could anybody NOT like that sweet little boy??? How can we help him? How can we help you?

Anke Smith All your messages are so meaningful and I will read them and show the to Connor. He asked me to see the Counselor at school and he was great. They made a pack that Connor will give school another try next Tuesday and for recess the Counselor will introduce Connor to other 2nd Graders that are feeling like him, plus a volunteer 5th Grader will hang out with him as well. I know a lot of this has to do with the emotional impact the drugs are having but neverless it needs to be addressed as the drugs are a part if his live until Remission or a Cure. Thank You all for listening! Hugs!

These little ones battling illnesses have so many secondary battles to deal with too. Tell Connor Elizabeth and Kaitlin's grandma thinks he is a wonderful little boy. Praying for encouragement for all of you. ♥

 Awww. It is good to hear that they are trying several different things and putting forth the effort to make him feel welcomed. I know he is welcomed but the important thing is that HE does not feel that way right now and with a little more time I hope he does.

So sad that those kids don't give Connor a chance to get to know them. They are missing out on one great kid. That one is their loss Connor, not yours. You are just going through a hard time right now. Youi'll get better and then they will beg you to hang out with them. Maybe you should give them a chance to come around, they probably just don't know how to play with you without hurting you.

 ‎:( that just breaks the heart!

Wonder if some of this is "blow-back" from his camp experience this summer of those two boys that kinda blocked him out of their clique and made camp so awful that he cried?

He may be feeling like crap and afraid to put himself out there! Glad the school is helping because if he stops now, you will have a HELL of a time getting him to ever go back!


so sad. From what I know about Connor it sounds like he just does not feel well.

Anke, please tell Connor I love him and I am ready for him to kick my butt in foosball!! Unfortuntately, I don't know when that will be, but I know it will happen!

Anke, 3 years ago, (today) I had my leg amputated. Sometimes I don't want to leave the house, just because I feel like everyone is staring at me. "Look at that lady in the wheelchair, she only has one leg!" But, at least when they see me, they know I can't keep up with them. But poor Connor. He looks strong and healthy, so all the kids expect him to do what they can do. I bet sometimes he pushes himself harder than he should. I feel for him. I am 58 years old, and I still feel uncomfortable...imagine how an 8 year old feels! Please give him a hug from Ms Betty...I am sending him some good karma! xoxo

Anke Smith I want you to know i am printing out your postings for Connor to add to his JM Journal he started. I told him it would be a good idea to write down each day what he thinks and how he feels and he made a wonderful and thoughtful entry already. I will leave it up to him how much he wants to share in the blog but he was fine with me sharing this note he wrote today. He did tell me he will give Gateway another chance next week but wants me to promise him that if he does not like it again to not take him back. That puts me in a tough spot as I don't want to take any more control away from him as JM has done that enough but also don't want him to pull back completely about contact with others. I think time will tell and once we taper back again with the drugs he might be more out going again. Again THANK YOU seems not enough for all the support you are all offering.

Awe. I'm sorry that I didn't give you a hug today, Anke. You all seemed so involved in your conversation that I didn't want to interrupt! Love to you and your dumpling. I did get your texts today and saw you in the hall going to pick up Alex. Sorry to not get to you right away.

I know he is having to grow up a lot faster then other kids and this might be hard for him to understand right now, but he is making everyone he meets a better person for knowing him and his brother. They teach compassion and joy and they don't even know they are doing it. The small human treasures he gives may not show for years in those around him, but he is planting seeds of love and understanding. Love to you all and to all the little troopers that are changing the world for the better.

 Ohh, der arme!

So I want to add that I am still trying to get a hold of Dr. Dawson who I left a message with two days ago. She is suppose to be very good at working with Children who are dealing with Pain and Chronic Illnesses.
Also, right now Connor really seems to dive into his Journal and already wrote several pages full. I guess he got up at 3 am last night to work on school and work on his Journal.....

Thank You again for the amazing sounding board you all are giving me.

Hugs,

R A C A

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