So today we went and met with the pediatric rheumatologist in Chapel Hill, it took about and hour and 30 min to get there with traffic. We got in around 9 and was seen pretty quickly today! Dr. Stein said that her arthritis is still pretty active, and he is going to increase her Methotrexate from 17.5 to the full 25mg a week but also put her Enbrel to help put her arthritis in remission. She had to get another TB test and more blood work to make sure her liver is processing the chemo, and that her internal organs aren’t affected, and also a different type of lab work to see if she can take Enbrel. SO the nurse tells me that enbrel is really expense almost about $1500-$3000 and I am not sure if that’s a month or a shot, but that is like $36000 a year…I really hope this works, and thank GOD for my husband being in the Army b/c we couldn’t afford this no other way.
She is also going to get another joint injection procedure done in December and start on Enbrel injections. So now she will be taking two injections a week, he also changed her from Naproxen to something called Myobe (not sure of the spelling). It should be easier on her stomach, because I have to get up around 3 to give her meds to calm her stomach down. It is very tiring. So I am waiting to get her meds from the pharmacist, which I had a round with b/c the clerk seemed to not know anything about how much the co pay was, and if they carried that med. So I am feeling pretty ok, I am not sad my mom and grandma just are taking it hard, but to me I am not sure, maybe it hasn’t set in yet. I am just numb I suppose, I just want it to get better.
I am just I don’t know!
So it will have been a week tomorrow and Cat’s asthma isn’t getting any better period. She is still on her antibotic, and she finally listen to me on how to take the nasty medicine. She was on the steroid for 3 days and it didn’t really help AT ALL! So tomorrow after school I think I will be taking her to the pediatrician again, then we go to the Rheumatoid Pediatrician Tuesday.
This week has been a bad week Catherine’s Asthma flared up on Saturday and now it is Wednesday and she is still battling the flare up. She is on a 3 day steroid, antibiotic for her ear infections, and the nebulizer machine.
So on the day before our injection Catherine started wheezing bad and had to use her rescue inhaler at least three times today, Sunday morning she woke me up at 4 saying she couldn’t breathe. So I gave her the inhaler and then every 4 hours she has been on the nebulizer machine. Around 4 this afternoon she started running a low grade fever, but she has been sneezing, coughing really bad, sore throat and chills. Poor thing, I tell you I was just thinking that wow we really haven’t had a serious attack since last year but tomorrow I know it will be a trip to the pediatrician. No school tomorrow for Catherine.
Tomorrow, most people will say “Thank God it’s Friday,” I say “Ugh it’s Friday” I have to give me daugther a shot on Saturday.
So I got a surprise in the mail, this wonderful book about How to Raise a Child with Arthritis. I can tell you what there are alot of things I didn’t know, such as this illness affects Native American and Caucasian children more than Black and Asian children. Then I was reading about the Uveitis (eye inflamation) and how severe it is, man I didn’t know it could be so horrible. It is so important that she not miss her eye appointments…GOSH you know the more I read and learn the more scared I get. This is horrible, we are waiting on the TMJ specialist to call us back but as I sit here and read this book…gaa I pray that her blood work will show something good like beating the autoimmune disease. Yall I pray that this works, I was reading that one family it took them like 3 years before their child was in remission…
Well let me say to you 5:30am is early to get up! We get Cat to the eye doctor, and Dr. Danforth said her eyes were great looking and to decrease the drops to 1 time a day (the same time) in both eyes for a month! I tell you that was a BLESSING to hear! However Monday morning after her injection, she did complain about the sensitivity to light. So I am not sure. She hasn’t complained at all about her knee, but I do notice if she sits in the car for more than 10 minutes, she walks with a limp and she tells me that her knee is stiff. I am in search of a really good electric blanket, I think a trip to Bed Bath and Beyond is in order, I didn’t like the ones at Walmart. She takes baths, but she said it is so hard for her to get up out of the tub, so I am not sure with the cold weather approaching. I do know that we need to keep her warm, at all times. However that works against me, if she gets too hot then her asthma flares up. So GO figure with that.
This afternoon we went to the regular dentist and she got a great report, no cavities and her teeth are GREAT! So I am just waiting on a follow up from the TMJ dentist in Chapel Hill to figure out what we are going to do for her jaws…
PS my middle child is the one deathly afraid of dentists and we didn’t find that out until today, so needless to say she will be referred to the Pediatric Dentist to get put to sleep to get her cavity out.You know I remember back in October last year, Catherine had an Asthma attack and her pediatrician put her on predinisone steriod, and you know her KNEE went down over the 5 days, I mean it LOOKED awesome, then after she stopped taking it, it got inflamed again. I wonder if they give her prednisone would that work and just take away the swelling.
WHEW it went so much better! WOW I didn’t count I just told her to close her eyes…and I gave her the injection and she just said wow mom it didn’t hurt