Wednesday, October 23, 2013

Three years of JM and MCTD

It was September 2011 when we first realized that Emily was very, very sick.  We had gone to her former rheumatologist who had kind of given her a diagnosis... without any solid evidence to prove it.  After blowing us off and telling us to come back in three weeks, we begged a new rheumy to see her.  It was October 13, 2011 when we got the definitive diagnosis.  We didn't get home until late on October 19th.  Six days of hospital time- upper GI, MRI, lots of labwork, EKG, PFT, daily steroids and anti-inflammatories, and a lot of sadness.

Since then, we have been through a lot.  We had the whole Prednisone double-the-weight-in-two-months thing happen, which was horrible all around.  It caused major depression for her, and ripped our hearts out as we watched her eyes swell shut.  We have found out about her throat muscles not working due to dermatomyositis, and then later we found that the scleroderma features are causing the esophagus muscles to spread, leaving a gap between it and her stomach.  We have found out about early changes labeled as mild interstital lung disease.  I saw that at our pediatrician's while reading the newest note they had sent over.  We've had low cortisol and adrenal insufficiency, which contributed to causing kidney stones.  As yet we have not resolved any of the above, with the exception of the stones.  At this point, her pain continues to increase, likely because her pain amplification has come back.  Her medicines just keep increasing.  Below is the list of meds and vitamins that she has to deal with daily.  I print this every time we see any doctor.  I print triple copies when we have a hospital stay.  You never know what kind of a resident you are going to have!

Despite this, we still have hope.  Hope that one day she will be in remission.  Hope that there will be no more progression.  Hope that her pain levels will come down, as they continue to be an 8-9 (on a pain scale that goes from 0-10).  Hope that she won't need to use one of those electric carts whenever we have to go to a big store.

We had an issue the other night at a big box store.  I usually try to avoid this place, but I promised my oldest daughter that we would upgrade her phone there because the AT&T stores no longer carried the one she wanted.  We went in, all of us dressed in business clothes since we had just come from my honor society induction.  We chose an electric cart to help Emily get through the store, and we set about on our way until a greeter stopped us to tell us that she wasn't allowed on the cart unless she sat on my lap.  I pointed out that they were there for disabled people, and she was a disabled child. She said that children were not allowed to ride them regardless.   I am not quick to anger (except maybe at work), but I was livid pretty quickly.  I asked to speak to the store manager, or a manager on duty.  I offered to go to the car and bring back our handicap permit, but Emily decided to show off her port scar and educate this woman.  She claimed that it was company policy, but she did not call the manager for us.  Instead, she told us that she would "let us go this time".  Nice.  I wrote on their Facebook page, and their corporate Facebook, who directed me to a feedback link.  I know you can't see her illness, which makes this our job to educate.  We have never had an experience like this before, and we hope to never have another.  I ended my post with "my child has likely suffered more in the last three years than this greeter has her entire life".  And it is so true.

All in all, we are managing.  For me personally this year has been pretty amazing, but it really sucks to see my little one suffer.  It just shouldn't have to be like this.


Conditions:  Mixed Connective Tissue Disease, Dermatomyositis, Juvenile Arthritis, Raynaud’s Phenomenon, Scleroderma, Vasculitis Rashes,  Esophageal Dismotility
Current meds- last updated October, 2013
*Prednisolone- (15mgs per 5ml) Take 0.5 mls in the morning
Hydocortisone 5MGs- Take one tablet twice a day
Prilosec (Omeprazole) 40mgs One capsule daily.
Procardia ER 30MG (Nifedipine)- One pill once NIGHTLY. (For Raynaud’s)
Mycophenolate 250MG (generic CellCept) 3 pills A.M. (750mgs), 250mgs P.M.
CVS Iron  65mg- 1 pill once daily
Zyrtec- 10mgs nightly
Amitriptyline HCL 20MGs- Take one tablet nightly at bedtime.
Symbacort 160/4.5-    Two puffs twice daily  (as needed- through winter and sickness)
Sucralfate 1GM- Take one half  tablet twice a day  
Xanax .25 mg- Take 1 half of a tablet as needed for anxiety
Lidoderm 5% patch- apply as needed 12 hours on, 12 off  ******** NEW*********
Multi-Vitamin & 2500 Citracal 400mgs calcium with Vitamin D 500 IUs– once daily
Vitamin D- 1000 IUS, 2 fiber gummies per day
***IV Infusions:***   
Remicade 325mgs monthly
Rituxan 400mg- Every 3 months

IViG Gamunex 10% (15 grams)

Thursday, October 3, 2013

Would YOU like to win a book?

My wonderful friend Kim has written a parents guide to dealing with JA.  There is a contest happening RIGHT NOW that can help you to win a copy!  The contest ends November 1st.  Just go here: 

I promise I will update soon.  I have just been swamped with school work, and honestly we are still in that "I don't have a clue what is happening with this disease" chapter.  I guess it's the hormones trying to work in her that are making things go crazy.  I have no clue.  I will be back when I have some idea of what is happening.  As it stands, she hurts pretty badly every day.  That hasn't changed at all.  Her head, her joints, and sometimes her muscles.  It's been a really tough year.  This too shall pass............