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

Friday, June 3, 2011

Possible Injection Solution & at the Dentist

It has been two very busy days for us and one of the first things I like to say is a HUGE Thank You to the amazing support and help I received from my JM Mommy Friends and from my Nursing Friends.
It seems that the problem of the painful injections might be due to us getting the wrong needles in the mail and me not catching it. I was told that most are using 30 to 31 gage needles and I remember thinking that in the last few weeks the needles seemed bigger but it not really registering. So after being told to look at them, I noticed that indeed the needles I am using on Connor are now 27 gage. This could really be the whole cause for his pain and after calling Amerita they promised to overnight the smaller needles we will find out next Tuesday if that will be the magic trick needed. Never less, I will also take the suggestions about icing the area as well. Can't help to be covered on several bases. I am truly grateful at how tight knit our JM Group is, including my wonderful friends who are dealing with other Autoimmune Disease or Blood Disorders. Everyone tries to help out with thoughts and ideas. It truly shows we are a family and even thought we are all from different backgrounds, countries, religions and political believes we are bound by a common language of JM and the worry for our children and ourselves. I think it will be a bond we are forming that will last for lifetime. To root for each others kids, to cry with each other when the battle is hard or even close to loosing. Then the magic to find laughter in all of this. Precious!

Yesterday was also Connor's Dentist Appointment to have three of his teeth pulled. Connor has so far never lost a tooth on his own and I admit it saddened me that the only time he gets to meet the Tooth Fairy is through a Dentist Visit.
As with the Injection issues, we received so much love and support once again through Facebook postings, and Connor was smiling each time I told him someone had posted how proud they were of him. Now the visit did not start out as smoothly as I hoped. Connor was a bit nervous but he knew what was explained to him so he was prepared. That is we thought he was until the Dentists Assistant came in and told him that Mom and Alexander could not be with him and would have to wait in the waiting room. It took all of 3 seconds to see his demeanor fall and him starting to cry. I held him and told him how many times he has faced a scary situation in his life and how he always came out stronger in the end. We hugged and I told the assistant that I would walk him back to the room. He settled in his chair and I told him about the yummy ice cream lunch that what waiting for him and he looked at me and said 'Mommy, you can leave now because I am brave and I can do this". So out I went to be with Alexander again and I admit I felt like crying myself. Alexander of course was very upset as well so I held him for the whole duration while he was trying not to cry. The nice part was that we were allowed to txt with Connor and the Assistant would txt the Front Desk and they would read the message to us and we would post a message back to him. It was great timing as Ron was able to txt from Dallas to tell Connor how proud he was of him, and Connor txting us back that he loved us and that he was being brave.
There is always a huge weight on Connor and I when he does go to the Dentist. He has not had pleasant experiences in the past and those memories can hound you. When Connor was 2 years old he fell and chipped his front tooth. Unfortunately for him it chipped in a way that the nerve was exposed so even eating a banana was not possible. This happened 3 days prior to his Tethered Spinal Cord Surgery and that mend that the Dentist had to pull the tooth with no numbing or Anesthesia. It also had to be pulled because the Neurosurgeon said that any work trying to repair the chipped tooth could cause an infection and she can not risk doing a serious surgery on his spinal cord with that hanging over our head. So, to my shock back then, I was told as I was yesterday that I could not go back with him and that the parents have to wait in the waiting room. I tell you it was horrible to hear my son scream bloody murder and then be told it took four people to hold him down. I was sure then that this would be the last time I get him inside of a Dentist Office! Well, a couple of years later we found this wonderful place in C-Springs (Rocky Mountain Pediatric Dentistry). It was such a friendly place that Connor and Alexander actually look forward to going to get their teeth cleaned. they do well with x-rays and Connor had a cavity repaired a few months back with no issues either. I was always allowed back with the boys and that makes me think it might be a policy when it comes to pulling teeth? maybe they know I would be the one not handling it well!
The Dentist walked Connor out yesterday telling me and him how proud she was of him and what a great job he did. Each of the boys got a sugar free lollipop and Connor was wearing a tooth necklace container that was holding all three of his teeth. I would be lying if he was not feeling pain or feeling uncomfortable but he was excited about the Ice Cream and Milkshake at Gunther's 60's Diner, and seeing Elvis on the TV there was not to shabby either for my little Elvis fan's. We then headed to the movies to watch Kung Fu Panda II, which was very cute and even better because my friend Jennie and her Son Zachary joined us. You think this would be excitement enough but we then finished the night with a wonderful evening at the Olson's Family Home that brought some fun playtime for the boys and a yummy dinner of Noodles, Yogurt and Ice Cream for the kids and Brats and Salad and Veggies for us Adults. THANK YOU Jennie and Matt for giving me a night off. Did I forget to mention the yummy glass of wine that came with dinner? Trust me, I deserved and needed it - haha

So we got home a bit late but because of the excitement of the day my two boys were passed out within 5 minutes of laying down. They really thought they could stay up for the tooth fairy - haha.
This morning they were happy to see the Tooth fairy did come and brought Connor 12 shiny Quarters, a dollar per tooth.

My dream for Connor would be to loose one tooth without any impact from the outside but I was warned by the Dentist that he most likely has to have a few more pulled. None of his baby teeth are loose at all and the permanent teeth are coming and they don't seem to care if there are others in the way. According to Chicago this is a JM issue but I realize by talking to many of my non JM Mom's that their kids are dealing with those issues as well.

So I am ending this blog with a huge HUG to Addie, Connor and Alexander's wonderful friend who was a front runner this week and had a tooth pulled a day before Connor. She was very brave as well and did wonderful! We just love how amazing our kids are!!!!!





Hugs,

R A C A


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