Bubble Boy-9/25/14

Talked to Diana this morning, had a lot of new information to say.

First off, no hospitalization, unless he starts bleeding or has excessive unexplained bruises. The immunology clinic in Chapel Hill wants to see him next week, and they don't want the IVIG to offset any testing they need to do, for correct results. So as long as he remains asymptomatic (aside from the petechia), he becomes bubble boy at home, until his counts go up.

Which shall be fun with the school system on getting these absences excused now that he is in high school. I forgot to ask Diana to fax a note saying he is under a doctors care until further notice, so I will take care of that later on today or tomorrow. Also have to see about getting Brittany to go to his classes sometime next week, and get any work he needs to do. Luckily they do afterschool tutoring, etc., so he can easily make up any work that he misses. This is the part that stresses me out, his schooling.

So, the Immunology clinic will call me later today (supposedly) and try to fit him in next week. I am going to try and pull for a Wednesday travel day, since I will be out of town Sunday-Monday. The later the better of course.

Also we have upped his dosage of steroids and CellCept once again. We were at 8mls twice a day for the steroids, we are now up to 16mls twice a day on that. We were at 850mg a day on the CellCept, we are now at 1,000mg on that. Boy is going to end up eating me out of house and home (not that he doesn't already do that).

His counts:

Platelets: 8,000 (were at 25,000 last week) EXTREMELY LOW
Hemoglobin: 13.2 (the same as last week) BORDERLINE LOW
WBC: 5.5 (they were at 4.2 last week) NORMAL
Neutrophils: 70 (they were at 64) BORDERLINE HIGH
Bilirubin: 0.8 (they were at 0.7) NORMAL
Retic Count: 2.4 (they were at 2.5) HIGH

Until next time....prayers and thoughts as always! :)

Update: Immunology Clinic called me, we have to travel to Chapel Hill on Tuesday, to get testing done.

Count of 8,000-9/24/14

We had labs drawn today, and the doctor on call in Chapel Hill called me tonight. Jordan's platelet count is at 8, which is a drop from 25 from last week. She said because he doesn't have any active bleeding, its not an emergency to take him to the hospital for treatment tonight, just to sit tight until Dr. Gold or Diana call me in the morning with what they want us to do. I am about 99% sure we are heading to the hospital for IVIG in the morning, and will be there for the next couple of days. *SIGH*

I am going to keep him home tomorrow, 1)because his platelets are that low and 2)because of the risk of heading to the hospital in the morning, no sense of taking him to school to be checked out an hour or two later.

Bad timing, since I am going out of town on Sunday. Right now, my fingers are crossed his other blood counts are decent, and that we can do IVIG here in town, instead of traveling to Chapel Hill.

Will update when I know more...prayers & thoughts....

Platelets Taking A Dive-9/22/14

Well its been two weeks since we increased the CellCept, and Jordan's hemoglobin and white blood cells have finally increased (not by much, but no decrease is a good thing in this house). Sadly his platelets are still dropping and he has petachia on his waist and legs. I am keeping fingers crossed that Wednesdays labs will show an increase, even if its by a little margin.

Platelets: 25 (they were at 50 on 9/10/14)
Hemoglobin: 13.2 (they were at 12.2 on 9/10/14)
WBC: 4.2 (they were at 3.9 on 9/10/14)

We typically don't do IVIG unless his platelet count drops 10 or below. So fingers crossed that won't happen. I am going out of town on Sunday for the day/night (taking my daughter to the One Direction concert, and its a 4 hr drive), and I dont want to worry about him or put that full responsibility on Brian with Jordan needing to be hospitalized, and juggling Conner too. So fingers crossed and prayers to the platelet gods that we get an increase this week!

This Week's Update-9/11/14

Jordan has been doing good with the CellCept dosage increase, no issues with it, thankfully.

Bloodwork shows counts have dipped again, which we fully expected due to the CellCept increase; just don't like any type of dips in his blood counts, worries/stresses me out.

Platelets: 50,000 (84,000 last week) LOW
Hemoglobin: 12.2 (12.4 last week) LOW
WBC: 3.9 (4.1 last week) LOW
Neutrophils: 64 (68 last week) GOOD
Retic Count: 2.5 (1.9 last week) HIGH (This one worries me a little bit, so keeping a eye on it)

But otherwise, Jordan is feeling/looking great, no physical signs of any low counts (even when his platelets dropped to 39 at the end of July, totally took us by surprise).

We have an appointment on Monday to see Dr. Gold as per our monthly appointments. Guess we are going to give it another week or two, to see if his counts finally stabilize from the CellCept increase, and hopefully they do, so we can start the decrease on steroids.

September-January always has me on the edge of my seat with Jordan, this is typically when his auto immune flares up. I need to see what is going on with the allergist appointment and see if that has been set up yet. I really want to see if Jordan has an underlying primary immunodeficiency other than ALPS (which Dr. Gold is pretty sure he has, but not definite yet), that and I have tons of questions for the allergist. I have a strong suspicion that Jordan has an underlying PI (primary immunodeficiency) called Wiskott-Aldrich Syndrome on top of Evans/ALPS. But again, we will have to wait and see.

Until next time...thoughts/prayers as usual.

Major Growth Spurt-9/5/14

Well now I know why my grocery bill has increased so much the past month or two.

Diana just called me from Chapel Hill. She said looking through the paperwork and labs the past 3 months, Jordan has grown 3 inches and gained 10lbs since June (5'6 and 110lbs presently). So its obvious that he hit a growth spurt this summer, and due to that, the CellCept needs to be upped according to his weight/height.

So we have increased it to 850mgs a day (it was at 750mg). We will do labs on Wednesday, just to make sure his counts are still good (due to the increase of the CellCept, it will lower blood counts). She said if counts are still holding, we will do a decrease on the steroids.

So fingers crossed this is why his counts dipped in July, and that its not something else going on.

Prayers and continued thoughts please.

Ying Yang Game-9/4/14

Jordan went to see Dr. Gold about two weeks ago, it was a good appointment. We were in/out in about an hour, which was record timing for us. He is impressed with how well Jordan looks and feels, considering his counts are not in normal range.

They just called me this morning about yesterday's lab results.

Hemoglobin is 12.4 (down slightly from 13.0 on 8/12/14)
Platelets are 84 (up from 54 on 8/12/14)

As you can see his hemoglobin is playing the ying yang game. Went from 12.7 to 13.0 back to 12.4. We did labs yesterday, I am waiting for his nurse to email the results to me. Hoping his hemoglobin hasn't dipped again.

Dr. Gold is concerned though, because we just cannot get his hemoglobin up past 13.0 the past 3 months. I don't know if Jordan's body is still trying to get over the shingles incident we had to endure in June, or what. Typically September-January is when Jordan flares up, and his counts start dipping, and then we are doing the hospitalization crap all over again. I pray that will not be the case this holiday season. But due to the fact his counts are like a rollercoaster ride right now, they are going to look into increasing his CellCept, which has me a little worried, since it does suppress your immune system. Only thing I can do as a parent, obviously, is to keep him as healthy as possible, and keep him away from anyone sick (which is hard to do, since he is in school everyday).

We never did do his allergy testing earlier this year, I had assumed (as I mentioned in another post) that it was just regular allergy testing, but Dr Gold told me it wasn't, that its more along the lines of testing of his immune system to see what is going on. So they are going to see about getting him another appointment for that in Chapel Hill, which means a day of traveling in the near future. Jordan and I will probably make plans to stay the night up there when that happens, so it isn't a whole day of traveling (its almost a 6 hr drive round trip); apparently the testing is an all day thing, which shall prove to be fun, since he doesn't have the best veins and its always a struggle to get bloodwork from him.

Until next time.....prayers and thoughts will be appreciated as we continue this journey.