Lab results not as good as we thought

Sigh...

So we went to the doctor on Friday morning. (Sorry Cheryl..I was taken off guard and truly forgot to give Dr W your best.) There were a couple of labs that had not trickled in apparently when I was told that everything was normal.

In addition to the Intracranial Hypertension it appears that Crystal is one third of the way to full blown Lupus, she has been diagnosed with Vasculitis and Diffuse Connective Disease. These all intertwine in the auto immune world. I am having a hard time coming to grips with it all.

She has started large doses of sterroids and will begin a low dose of chemo in 2 weeks to be taken daily for at least a year.

She is still feeling better from her last spinal tap and went to her dance and had a fantastic time. She does not realize the severity of all of it yet and I don't know that I should tell her. I definitely will not tell her before graduation on Thursday.

It is taking everythiing out of me to try to stay positive. I am completely exhausted and so scared about what is in her future.

I feel terrible posting this after I was so happy to post good news the other day, but I knew that if there was somewhere I could get it out it would be here.

Thank you all for that.

Hi,

I am glad to hear that Cystal felt well and had a great time at the dance. I am sorry about the test results, but you do have a plan and it might help. The auto-immune diseases are really quite strange. ( I have neurocardiogenic syncope/ POTS- it means that I faint anywhere from one to ten times a day.} Though we have been to several specialists, very little treatment has worked. So autoimmunes can be strange.
Still, I know she will get through this.

I think waiting till after graduation to let her know might be good. What are her plans for next year- colllege? If so, she would be able to get a disability qualification that would allow for some accomodations due to headaches and the autoimmune stuff. I had migraines throughout college and this really helped me to get through it. (the fainting onluy started two years ago.]

Anyway, I just wanted to let you know I am thinking about you, and hope everything goes well.

Pain free days,
sailingm

Oh gosh that's hard.

I know it's overwhelming but on a plus side, you know what's coming for Crystal. I feel so bad for kids who get hit with this stuff. There's a family in my life that their younger daughter (who's 17) has been diagnosed with MS. It's attacked her right eye and made her blind in it. Treatment is sort of working but when they stop, her vision deteriorates again.

I'd wait until after graduation. Then hopefully this summer you can get a handle on it before she starts high school. Hopefully she'll be able to attend more days and have a fairly normal high school experience.

Just sucks and I feel for Crystal and her mom. Just as hard on the parents as it is on the child. The family I mentioned - her grandfather had MS and the kids were told it wasn't genetic. The dad told me that if they knew this could have happened they would have thought twice about having kids.

You and Crystal are in my thoughts.

Becky

Jennifer, keeping you and Crystal in my thoughts and prayers.

Thanks a lot guys. This just stinks and I really do not want her to have to deal with any more than she already has. She has been out of school for a year aside from this last week really. I just want her to be a normal bratty teenager!

Nobody deserves this, least of all a sweet kid that would do anything to help anyone.

First of all, love the photo! Beautiful dress, beautiful girl!

However, my jaw dropped at the rest...oh Jennifer.......

I was talking to Mishkyn yesterday (another Dr. W patient), and I was telling her Crystal's tests looked good, and now this!
Well, at least you know more about of the chronic illness monster you are fighting. But I'm just so sorry to have more anxiety, diagnoses, and treatments thrown at you guys!

At least you have an excellent neuro now, who will see you through it!

Again, I'm so sorry, and I hope Crystal can tolerate her new treatments without any great problems.

Take care of yourself, Jennifer, so you can care for her.

Hugs!

Cheryl

Thanks Cheryl. Dr W is wonderful and I have complete confidence in him. Just to be precautionary I am having my cousin's husband look at the labs too. He is a pediatric ER doctor in Tennessee.

It never hurts to have a second look.

I feel for both of you. I would let her have as much good time as you can before you tell her. I hope graduation is as nice as the dance!
Hugs,
Cindy

Thank you. She is going to an amusement park today with her school and I have told her that she cannot really ride rides per the doctor. I am terrified as to what will happen if she will not listen.

I asked her if she needed me to tell her the details as to why and she said that she does not want to know.

Today will be panic attack day...all day.

Jennifer,

My thoughts and prayers for you both. Let her enjoy what she can. I have known several young ladies with Lupus. (30 to me is still young) One gal had a teenage son and worked for the local police department.

Keep us posted.

Hal

Lifting you both up in prayer.

Praying, that she had a good "safe" time at the amusement park.

Bless you

I hope I can give you some help.
I have an autoimmune disease called Sjogrens. It's funny when I go to the ER every 2-3 months with small bowel obstructions (from a laparoscopy 5 years ago, the doc severed an artery It's an ongoing problem)I tell them my drug of choice is prednisone!! I always feel so much better after a course of prednisone!! Sjogrens is connective tissue disease that includes lung, skin, kidney mouth and eyes. I can wake up and have a torn rotater cuff, herniated disc in the neck, I woke up with part of my tail bone dislocated My entire adult life has been trying to save my teeth. We just keep putting out fires. So far so good. I have had celllulitis in the ankle with no site of entry.

Autoimmune diseases are plain nutty! But she can get stablized and I bet she will feel so much better with the steroids.

-A couple things about the steroids, she will be extremely thirsty. Try and have ice water around with a little flavor such as lemon. I can stand and drink a liter bottle of pop when on them.
-The body gets confused with the steroids and can't process carbs well. So any urine test for diabetes will be very high making it looks like you are in a serious diabetes crisis. Takes about 3 months post treatment to resolve.
_I get very talkative and wound up. Talking and moving like I'm on speed. I get plain goofy! Sleep can be a problem. She may need some sleep aid. But the pain relief is great.
-Methotrexate- is that the chemo she'll take? In the beginning she may have gi issues but her body will adjust.
-I'm sure they have gone over all the sun restrictions as well.
When I do the steroids the migraines are better and my body just works better.
Hang in there. This may be a big plus, the dx, she may feel better than she has in a long time.
kathy