Fellow JRA/Uveitis parents-
**I am not a doctor or a nurse, just a parent trying to share information. Before administering any drug to anyone, you should consult with your physician.
Administering this drug was not self explanatory since there was no documentation from the pharmacy to explain to a parent how to do it. I have personally never worked with syringes, needles, etc. I want to share, frame by frame how to do this in case any of you need a little help like I did. We chose, after consulting on a message board with some other parents to administer the drug at night on a Friday. That way, if there is any side effects or fatigue, she is home with us to monitor her. I also chose to give it right before bed so that if she suffers nausea, she sleeps through much of it. (I hope.)
To administer Methotrexate, [MTX], orally, (which means you will REMOVE THE NEEDLE prior to squirting it into your child's mouth):
1. Your RX should include 3 parts: MTX vial, alcohol swabs and needles with syringes attached. From what I understand, there are two types of MTX, with and without preservatives. Ours is with a preservative so that we can get the maximum dosage from the bottle with no waste. The other kind does not have a preservative in it, therefore after the first dose, the rest is discarded. (Discuss with your own doctor though.)
2. SHAKE BOTTLE WELL. After carefully removing the orange cap from the vial, wipe the top of the vial lid off with the alcohol swab. This will ensure it's sterile.
3. Remove the needle/syringe from the sealed package. There is a cap on the end, remove the cap to expose the needle. (Blech...I really hate needles.)
4. Insert the needle directly into the "bull's eye" of the vial lid.
5. Turn the bottle upside down carefully balancing the needle & the bottle in one hand, while the other hand is pulling down on the plunger to fill the syringe. (Notice the iced coffee in the background...Mama plans to be up late into the night to monitor her and make sure she has zero side effects. In fact, I plan to sleep in her room. Call me a worry wart!)
6. Make sure you don't have any air bubbles or gaps, so that you are certain that you have the exact dose required by your doctor. For our daughter, the dose is .3 mls once a week.
7. Replace the orange cap on the vial and put the remaining MTX back in the fridge - keep it in the original box so that it's not exposed to the light every time the fridge is opened. Keep the syringe out on your counter and allow it to achieve room temperature which takes approximately, 60 to 90 minutes - this was our doctor's recommendation.
8. REMOVE THE NEEDLE FROM THE SYRINGE - (you just twist it off) - I used a napkin and the needle came right off, leaving just a medicine filled syringe. Keep it pointing up so you don't lose any!
9. Our doctor recommended that we give our daughter no fluids 10 minutes before or 10 minutes after because the enzyme's could cause the MTX to begin to break down.
10. Our doctor advised that we squirt the medicine into her cheek, NOT in the back of the mouth because that feeling would cause her to gag/choke. **We are told it is tasteless...I am not sure that Lucianna agrees with that - but she did great.
HERE IS OUR FIRST EVER MTX ORAL DOSE & OUR LITTLE TROOPER!
Below is a picture of the empty syringe, the needle after it was removed, and our little munchkin at 9 months old. Little did we know that just over 2 years later, we would be battling this disease. She is strong though, and we are so proud of her.
We have read online from other parents that say hydration is very important on this drug - so lots of water from here on out!
Lucianna's Proud Mama
BELOW THIS LINE, I WILL UPDATE THIS BLOG POST
IF WE RECOGNIZE ANY SIDE EFFECTS IN THE NEXT FEW DAYS.
Sunday, September 23rd: - So far so good...
As you read, MTX is administered on Friday nights in hopes that if she feels any nausea, she would perhaps sleep through it. I monitored her throughout the night (until about 3am). She had some fairly interrupted sleep (a lot of tossing and turning) but overall did well. The next day however....she was VERY GRUMPY. That said, her grandparents were here from NY and I think some of it was just the change in her daily norm but I also think some of it was drug/sleep related. Otherwise, she did great and I am so thankful that "week 1" went so well. **A special thanks to my in-laws who were so helpful in coming to visit this weekend. My MIL cooked, cleaned, helped with the girls, brought food, helped with laundry...my FIL, played with the kids, took out trash, helped around the house and both are just the most amazing extra set of parents that I could ever hope for. I don't know if they truly know how much it meant to me to have them spend the weekend and help so much. (Lucianna's daddy worked this weekend.) I have always felt so lucky to have them as in-laws. They are living proof that "family is always there for you".
If Lucianna has any other side effects or changes, I will post them within this blogpost for anyone reading who is worried about side effects for their child. Whatever you do, don't read the accompanying documentation for the MTX. It will terrify you. Just leave it in the box and know the major and minor side effects in advance.
Have a great week...next dose is Friday night.