Still on Meds./Feeling under the weather

So, an update on Allison is in order.  In our last post we told you we were going to take her off her meds. and see how she does.  After much thinking, praying and discussing we decided to wait a bit.  The three of us (Allison, Mom & Dad) weren't convinced we were ready for that extreme of a jump.  So, she has continued to take her methotrexate as normal the last two weeks.  We need to make the decision on if we are going to try and wean her off, take her off completely or continue status quo with taking the medication.  When we did research we found most often kids are weaned off this medication not taken off cold turkey and that usually they go longer symptom free before even weaning them.  We still have full confidence in our doctor and when the decision was made to take her off he wanted our complete agreement.  But, we have some concerns and so does Allison.  We decided it is better to take our time and not feel rushed and pressured.  So, we will keep you updated on her status.

Allison has also been sick this week.  She has missed school all week and I don't see her being able to make it on Friday. Missing school is a huge deal for her since she missed so much last year.  She seems to have a flu bug.  ( No, we are not concerned about Swine Flu at this time as she is not running a fever.)  I am concerned because the medication she takes suppresses her immune system and with being sick her immune system is compromised even more.  So, we will keep an eye on her closely even when she starts getting better.  With her depleted immune system I fear she could be very vulnerable if exposed to the swine flu.  Lots of hand washing and use of sanitizer around our house right now.  

The Arthritis Walk in Salem is coming up May 9th.  Allison has currently met her personal goal of $500 but we need to keep working on the team goal.  She is now thinking of raising her personal goal.  We currently have 11 members on her team ( Mitch has yet to register-slow poke.) If you would like to take a nice stroll along the river in Salem with us on Saturday May 9th feel free to sign up for Allison's team. 

 Check out the website at www.salemwalk.kintera.org     and click on Allison or Team Lightning.

Going off Medication??

Allison had her pediatric rheumatologist appointment yesterday ( Tuesday) in Portland.  Dr. Kingsbury checked her all out and thought she looked great.  So, where do we go from here?  After much discussion we came to the decision to take Allison completely off the Methotrexate.  This will allow us to see if the remission she is having is a drug induced remission or a "true remission."  We could continue to slowly wean but Dr. K. feels it would be better for us to try and know for certain how her body is going to react without medication.  It could take 3-6 months before we would see any issues if she was going to have any.  He seems to feel it is most likely that she will be fine and but there are no certainties.  

If she did begin to have symptoms (fever, rash, inflamed joints) we would then put her back on medication to get her immune system back under control.  This is a hard decision because Allison is doing so well and we hate to mess with that but we do not want her having to take medication if she doesn't need to be taking it.  On the way home from Portland, John and I  talked more and we are going to do some more talking, praying and research before we discontinue her meds. on Friday.  

While in Portland we visited some friends whose daughter (Courtney) was burned terribly in an accident over the weekend.  Please keep this family in your thoughts and prayers as she will be in the hospital in Portland for possibly a few months.  Her dad works with John at the fire department. It never fails to amaze me how lucky we are to be associated with The Albany Fire Department.  The people who work there are quick to rally around each other in times of crisis and need and once again have stepped up for this family.   It is a hard thing to understand unless you are a part of it.  Makes me proud and thankful to be part of this fire department family.  

Have a great day and hug your kids a little closer today.

Leslie

*** Almost forgot, Allison's blood work was excellent.  No issues at all. Whew!!!

Salem Arthritis Walk-May 9th, 2009

Come and join the fun.  May 9th is the Arthritis Foundation Walk in Salem, Oregon.  Allison has her team page up and again this year we will be called Team Lightning.  (She is very excited this year since she is the youth grand marshal.) Allison is hoping to get a good sized team together to walk and try and exceed the amount we raised last year.  If you would like to join us on the team we would all love that and it is easy to register on-line.  If you would like to donate you can do that on-line too.  You can donate directly to the team, to Allison or any team member.  

Tonight is the Kick-off party for the walk in Salem.  We will be heading up to attend the party. 

(John has to miss as he has two already scheduled meetings tonight.) I am speaking about how arthritis has effected us.  This will be the first time I have spoke about this in a public forum so hopefully it goes well.  (prayers are appreciated if you feel so inclined)

Here is the link to the Salem Walk page and be sure to look at the pictures, Allison is on there.

http://salemwalk.kintera.org

As far as how Allison is doing, she is doing pretty well.  She has had  joint aches and pains over the last week or so and a little swelling in her left knee.  We go back up to see Dr. Kingsbury (pediatric rheumatologist) on  April 14th and will have blood work done before that.  It will be good to see how her levels are doing and if they indicate any issues for her.  Generally, she feels good but at times seems to have some isolated issues. ( arm popping when throwing a softball, joint aches, stomach aches)

We will let you know how the party goes tonight.  

Leslie