Monday, May 30, 2011

Throwing up is now a habit

Charlotte will start taking folic acid every day (prescription strength) + an anti-nausea medicine to see if that helps with taking Methotrexate (her weekly shot for arthritis).

Seems to have become a habit, throwing up in the middle of the night on shot night. She constantly says her tummy hurts, its always been that way so hard to know on what level the tummy is rumbling. But lately, she's throwing up on shot night & so her dr. is putting her on 2 new supplements to help.
Tossed this out on facebook - I am in a group with Arthritis moms across the country. Here's the responses I got back:
My note: Charlotte has been consistently throwing up on MTX night. She doesn't take folic acid but I am asking the Dr. if that will help. Anyone else experience throwing up after giving Methotrexate? (She's been taking it for 3 years now, but its been this last month that the throwing up has been happening). Thanks for the comments!

*We have always given Elsa folic acid, but she's never had experience of thowing up. Ask as soon as you can.

*Dakota started throwing up after mtx so we give her zofran before her shot and for a couple days following. That helped a lot

*OMG Erika! Charlotte is going through exactly what Kylie is going through!! Dr. E. upped her dosage from .8 to 1.0 and she reacted horribly. (Vomiting and nausea almost immediately and consistently for up to 3 days!!) We added Zofran the the second week after the upped dosage but didn't do it for long enough and she vomited the 3rd morning after injection night and missed school again. Finally, this week Dr. E. said to do the Zofran every 8 hrs. for the 3 days and that worked beautifully. She finally was vomit free this weekend!! I hope Erika can get teh same relief!!

*Wow. The EXACT same thing has been happening to Claire for the last month. She takes Folic Acid 3 times a week. Yes, she did have a stomach virus but that's over with. Still, every Friday 9mtx night) she's up at night several times saying she's going to throw up, and sometimes does. I was going to call her doctor today.

* We did the folic acid and have for a long time no relief for mtx. Now we have a GI specialist and she is diagnosed acid reflux and takes nexium

* The folic acid does not help Kylie with the vomiting and nausea. Finally adding ZOfran has helped wonders. I hope the doctor helps Claire, too!

*I hate to sound like a stuck record but 12% of the population MTX does not work and in a lot of people how it manifest itself is through throwing up. We had no idea Liam was in this class. We gave him shots for almost 6 years and it was not until the last 2 years that he thew up.

*Do you mean the throwing up is an indication that the MTX is no longer working? I'm curious since Ky just started throwing up from MTX with dose increase. But the increase has seemed to help her (knock on wood) because yesterday we went to a fair and she was able to stand for 3 hours and wait in a few lines for rides. She has not been able to do anything like that in a year and a half. It was the first time we did something like that and left the wheelchair in the trunk of my car.

*It can be but throwing up can just be a side effect. The only way to tell is to get the blood test done.
http://www.avisetest.com/Patients/Services/AvisePG.html it is exepensive it was just under $400 for it but our insurance paid 100%.

* we were given Folic Acid from the beginning & have given it to her dissolved in her drink 1 time every night/day. we dont skip any days,. she gets it Every day & has for the 4 plus yrs for side effects/symptoms as well as depletion,.... we only had the 1 incident of vomitting/fevers,.... for a few weeks & then switched to pills for a couple months,... but when eyes flarred again,... had to go back to the shots & fine ever since...... although I count my blessings because I know things happen with these kids so differently & randomly. I just hate that they need any of this!!! I spoke with another mom whose child switched to gluten free & some other diet changes & has been free for 5 years now..... may check more into this again.

*
the blood test shows how well your body metabolizes mtx. Our children's hospital does not do the test because there theory is they knew what the top dose a child could have on MTX without ever thinking of what if it was not working. It still irritates me that thinking. Liam would throw up within 30 seconds of getting the shot and the drs kept on telling me it was nerves. Well when I did MTX and I got sick immediatly, I was really? After it came back that I was not metabolizing mtx and there is a strong genetic link our peds did the test. The one dr. at children's said he had to be on mtx to protect him with the remicade. She was not getting that Liam received no benefit at all from mtx. He is now on arava to protect for the remicade.

* Just an fyi... I was never advised about mtx toxicity until dakota was rushed to the er earlier this year and a dr brought it up. Google it and learn about it. I have since talked to a dozen moms who have children who developed mtx toxicity after being on it for years.
PS Before & after pictures, Charlotte lost her 1st tooth! Monumental in our eyes because it wasnt a tooth that is being pushed out by another tooth as it normally goes. This was the tooth she bucked out at age two routinely climbing into a chair. 1st sign of Arthritis - knee locked up on her. Bye tooth :( It lasted for 3 years! Pretty good!! :) Empty spot much more acceptable at age 5 than at age 2!

Sunday, May 15, 2011

Arthritis Walk

Pouring rain. Just slightly warmer than the Jingle Bell Run. But very fun to see a sign with your face on it & walk the entire 5k without complaints. It was a first: 1st time Charlotte walked 3 miles (shocked really!!!) & 1st arthritis walk in Vancouver WA (this was along the Columbia river & usually its along the Willamette river in Portland, OR). We had Ellie's BFF join us (that's Sophia behind Ellie) & Charlotte's preschool friend, Lily, walk with us on this very, very, VERY wet & cold day. The sign is inaccurate & I snorted when I read, "4 years" & asked, "anyone have a sharpie??? Add some plusses to that 4 years!" Which led to great conversation & education about Charlotte's setback during weaning & how she's back on every 4 weeks with the remicade, and currently on eye drops. Next eye appt is this week...

Monday, May 2, 2011

Remicade Infusion Days

Jordan is from LA & has JRA & uveitis like Charlotte. Jordan also was diagnosed at age 3 & is now 9 years old. She does Remicade infusions JUST like Charlotte (she is every 6 weeks, while we are back to the beginning of doing it every 4 weeks). Jordan's mom took a video of what Remicade infusion days are like. And Jordan is a CHAMP!!! So brave! I used to have to put Charlotte in a straight jacket, she's much better now, but no where near the grace & bravery of Jordan!! Hopefully watching this will help Charlotte understand other little girls go through this as well, with out the screaming & crying & resisting :) Jordan is awesome, I think you will like seeing this video, its inspired me to try & take some pictures/video of what its like for Tot.... and this will give you a good idea of what infusion days are like.

Sunday, May 1, 2011

Ballet All School Program

The ballet bun is OUT!

After going to ballet every Saturday since January... The All School Program (ASP) for School of Oregon Ballet Theatre ended this weekend after two performances. Emma was chosen to be in both performances, so we were able to watch both & loved being able to see her twice. Which might have been a total of 2 minutes :) Hip Hip Hooray for level one!

But to see the other girls & boys was amazing. This year they have graduating seniors headed to Joffrey, 2 apprentices for Oregon Ballet Theatre, University of North Carolina School of the Arts & The College of Fine Arts at the University of Arizona. All amazing places & amazing ballerinas!

Emma will be attending the SOBT summer intensive (3 days a week in July) & has moved up to level 2. A passion since she was 3, its been so amazing to watch her grow this year!