HSP update….again

Well the cardiologist appointment went very well and O’s heart looks great – just a false positive from the EKG so YAY!!!!  The nephrologist (kidney specialist) we saw in Gainsville gave us all on clear on his kidneys and verified that he did not have lupus and told us the key words we needed to use to get into Rheumatology (joints/bones/autoimmune specialist)!  Apparently you CAN NOT mention HSP or they will keep sending you to nephrology  – you have to say joint pain!!!!!!!!!!!!!!

It took us several months (yes I called every morning to see if they had any cancellations) but we finally got into pediatric rheumatology!  We had a good visit for the most part.  She watched him walk/bend/run and pressed all over his legs and feet and knees.  She found that he is favoring one hip and walking a bit funny, that he has flat feet and that he has some muscle weakness when he bends (his knees bend in toward each other vs straight ahead) and that he has tight achilles with pain when squatting.  She took x rays of both feet and ankles and we are waiting to be scheduled for an MRI on the feet and ankles as well.  She is looking for arthritis/inflammation though she says his symptoms are not in keeping with the typical arthritis since his swelling comes and goes and does not have a “hot” feel to it. She is thinking that maybe his tendons are connected to bone?  In the meantime she would like him to do physical therapy to help strengthen his muscles.  She feels that the month of not walking (he didn’t walk for 4 weeks during the beginning of HSP) and then the following months of little to no activity (he missed 44 days of school – some of those days he did go for a few hours but came home early) and sitting in a recliner or bed has left his muscles weak.

Gluten Free – out of desperation I decided to give the old gluten free a try again.  Since let’s be honest, I didn’t try very hard/very long before.  If I’m being honest with myself – I don’t want it to have any effect on his health and I don’t want him to have to eat gluten free.  He’s been through enough already!  After several weeks of gluten free – I have to admit that he is doing better than he had previously.  Could this be a coincidence – sure!  But it’s the easiest (ok – not that easy ) and least side effect thing we can try right now.  He still gets some abdominal pain but not as severe and the headaches and joint pain have gotten better.  We let him cheat a bit this last week and it didn’t happen immediately but that evening or the next day his stomach would hurt (keep in mind he hasn’t had bathroom issues to make us think he had any food intolerance)….sooooooo…..why not just keep the with the gluten free for now.

Overall – all but one Dr. says that his abdominal pain, joint pain, headaches and swelling are not from HSP but that HSP possibly triggered some other autoimmune disease.  We disagree since he basically had no health issues before the HSP.  The GI Dr. still wants us to do an endoscopy and colonoscopy but we are skeptical since O would have to be completely put under anesthesia and we almost lost my mom in December to a “routine” colonoscopy.  We are still weighing the good/bad of this recommendation.  They mostly want us to do it to rule out other possible issues but we would have to put him back on gluten for at least 2 weeks before the scopes so they can test his tissue for gluten issues.

Until this morning we did not have a full family history from my husbands side of the family.  After contacting his Aunt we learned that my husband’s mom had arthralgia (form of arthritis) at age 13 but was treated and recovered. Unfortunately her father at the age of 17 (my husband’s grandfather) had a sports injury followed by 3+ weeks of high fever that turned into the beginning of his battle with debilitating juvenile rheumatoid arthritis of the spine, shoulders, hips, and knees. This caused him to spend lots of time at Johns Hopkins (and included two metal rods in his spine) – a battle he fought off and on for the rest of his life.  I’m trying to not freak out and go down that rabbit hole – trying to be patient and see what the Dr. has to say from his xray and mri.  Unfortunately it will take several weeks to get in for an mri (apparently it takes a long time to get insurance approval) and then they only review mri’s twice a month 😦   We are stuck with the waiting game for now (and some physical therapy!).

If you are a parent with a child going through this – keep a log of EVERYTHING!  Try to get and keep copies of all recommended procedures/dates and lab results.  Each time we see a new Dr. they seem to not have all the lab results or information so I’ve started trying to keep everything in a binder.  This is like a job – trying to get all the forms and records from each provider and they aren’t easy to obtain half the time but it’s worth it – this has been a long journey and we are STILL trying to get all of my son’s lab results in print.  They will ask you for dates of when each lab was done and what labs – like you are a tech and have any clue what these lab results are!  It’s hard and frustrating but the more organized you can keep your information (think timeline too) – the easier.  I find that sometimes I forget to mention something to a Dr. because I forget myself!

Thanks for taking the time to read this super long update!

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