Update on my daughter on Humira.. Not too good, need some support, Laura questions for you too.

Arthritis Foundation Forum

Home

Welcome Guest ( Login | Register )

Update on my daughter on Humira.. Not too...

Rate Topic

Display Mode

Topic Options

Author

Message

Karen Clairmont

Posted Wednesday, July 22, 2009 9:35 PM

Group: Forum Members
Last Login: Thursday, August 20, 2009 11:16 AM
Posts: 11, Visits: 21

Hi all, well here I am again. Last time I was here we were getting ready to give my daughter Kaylee who is 2.5 and diagnosed with JRA back in March 09 and still flaring. She has it in both knees, ankles and 4 fingers on right hand. We entered into a test study headed by our Rhemuy and were reassured that this is not a placebo study.. K would receive the real drug and she is. Well we had very high hopes. So far she has had 4 shots, gets it every 2 wks. This past Monday was the first time we injected her at home by ourselves and it was horrible. I had been doing in the Dr.s office with the nurse watching me and everything was fine but doing it alone with just her and my husband and me was a whole different ball game. She was kicking the leg I was injecting and my husband was holding her but it still moved as I was injecting her. I tired to hurry up and do it then I was worried the needle would break off but it didn't. She did seem very painful at the injection site yesterday and when I just touched her leg she screamed in pain, maybe I got a muscle when she was moving around? I hope all the med got in there. So anyway here is the deal. The first shot and about 3 days into it we saw huge success and couldn't believe it. Her knees didn't feel as hot as they had been and she was not stiff in the morning she was walking first thing in the morning and even after sitting for long periods she was even taking little running steps and running. She started to eat better again and we felt like we were turning a corner and were so excited for the 2nd shot to come. Well the second came and went and we didn't see anything additional progress and I started to worry. Then a week before the 3rd shot she woke up one morning and she was stiff all over again, wouldn't walk in the morning, scooting on the floor, wanting to be carried around,etc. I was like WHAT? How can this be, did it just stop??? We did have bad thunderstorms that night so I was thinking maybe it was the weather and the damp rainy conditions. A few days went by and she maybe got a little better but then bad again and her appetite has gone away again. So when taking her in for the 3rd shot we expressed our concerns to the Dr and he said to hang in there that he thought it was the weather and to give it 3 months on the shot and then we will reassess. Well we did the 4th shot this week and still no real improvement. I think it started to work initially and then it decided that it was not the right med for her and just stopped. I really don't want to wait another month of this. I can't stand to see her going backwards after seeing her get better for a little bit. I am just dying inside. This has been going on since Feb 09 with very little relief for her and it breaks my heart and I feel like I am losing my mind sometimes. It seems like there is no end of her pain and that she is going to live her life suffering and I as her mother am a failure to her, not making her all better, that is what mother's are supposed to do. I feel like I am really on the edge. It is so hard to work full time, care for Kaylee as well as her twin sister, cook, clean, take care of my house and my husband and the entire time all I do and can think of is Kaylee's JRA. It is starting to affect my job and my sanity. Will this ever get better??? Laura, how is your daughter doing on Humira. I remember you hadn't seen much improvement either, have you seen any since we last wrote to each other? I hope you are having better luck than us. I just wonder where do we go from here. Do we have other drug options, Metotrex and embrel and that is it right? What if they don't work either? Does anyone give their kids any supplements such as fish oil or cod liver oil. I have read that is excellent to use for rhemuy arthritis in adults and would like to try it with her but have no ideal how much or what strenght I could give to a 28 pound 2.5 year old and is it safe for her. I also had a neighbor that told me his brother who has adult rhemuy arthritis was told by his Dr. to use black cherry extract when he had bad inflammation and he said it worked wonders. Has anyone else heard of that or used it? Any information I would greatly appreciate it. Going out out my mind here. I know you all know what I am going thru and understand and that really helps.

Karen

Post #4219140

Top

CritterHill

Posted Wednesday, July 22, 2009 10:49 PM

Group: Forum Members
Last Login: 2 days ago @ 6:50 PM
Posts: 135, Visits: 197

Hi. I can't help you with your medicine questions but just thought I'd post and tell you that you aren't alone. It is still early yet, you have a lot of drug options ahead of you and active research is happening in this area daily. New drugs will be out in the future. Progress marches on.

I'm not sure what the right thing to say to you is, so I'll just say what I am thinking.

You will make it through this somehow. You will make it through this because your kids need you. There is hope so don't give up.

You may consider calling your pediatrician and asking about dosages for supplements. I would imagine they would be able to look those up for you.

I'll tell you what my rheum told me when I had my little meltdown in his office, "This condition doesn't shorten her lifespan, she can still go to college, get a degree, have a career, fall in love, marry, have kids. JRA doesn't stop her from doing any of those things". I know it is hard right now to see her in pain, you need to find some way to control that.

I don't know the details of the study, but if you keep bugging them about her pain level, I can only imagine they have to relent and switch her to something else? Has she had joint injections? Been on oral steroids? I know those generally tend to help in a lot of cases. Can you find out why she hasn't been offered those options? Or if they even are options for her type of JRA?

I wish you good luck and hugs. I really hope things turn around for you soon. As a working mother of 2 - one with JRA, I feel your pain, I feel your stress, I feel your exhaustion. Forget the house, no one really _needs_ a clean house.

The best thing you can do to get some emotional strength back is sleep. My family doctor gave me ambien when I was going through this because all the demons and what-ifs and fears came out at night when I was trying to sleep. You may want to talk to your doctor about something to help you sleep if you aren't sleeping at night - which I am guessing you are not.

Post #4219151

Top

Pam 14

Posted Wednesday, July 22, 2009 11:06 PM

Group: Forum Members
Last Login: 2 days ago @ 10:20 PM
Posts: 481, Visits: 459

Hi, Karen - Just saw your post about Kaylee and want you to know you are the BEST Mom! Please don't get down on yourself. You are doing everything you can for Kaylee. I responded to you once or twice before when you posted on the RA website. I've had RA for 26 years.

There are so many different treatment options available today - even for children. Go back to your rheumatologist and discuss it with him. If you're not pleased with his response, then get a second opinion. There will be the right treatment plan for Kaylee. It may just take time.

PLEASE TAKE CARE OF YOURSELF. Kaylee and her twin sister need you! You cannot possibly take care of them without first taking care of yourself. Sleep is a necessity. If you aren't sleeping, then ask your doctor for something. Do you have anyone to leave the girls with so you and your husband can get a night out? You need to replenish your body, mind, and spirit. If you haven't done so, get some spiritual guidance, too.

There are many prayers being said for Kaylee - and for you. Just hang in there. Things will get better. You may be to be more assertive with her doctor - but things will improve. Please let us know how Kaylee does and how you are feeling. Post again on the RA forum and you'll get a lot of support. I wish I could reach out through the forum and hug you! You are NEVER alone! Pam

Post #4219152

Top

Vicky

Posted Thursday, July 23, 2009 8:06 AM

Group: Forum Members
Last Login: Yesterday @ 8:05 AM
Posts: 88, Visits: 256

Dear Karen,

My heart breaks for you as I read this post. We have all been there, Karen. In the early stages of Brianna's disease, it was really bad, and really aggressive (she's 2.5, poly). She was diagnosed December '08. I'll tell you what worked for her when she was unable to walk, during a horrible flare, was prednisolone. I'm not sure if your doc has prescribed it for your Kaylee, and I know it's not ideal, but my rheumy always falls back on prednisone when we see that a particular course of treatment isn't working, or when her pain is just too unbearable to wait for the next drug to kick in. She has been on MTX since December, and we added Enbrel in February '09. Like your Kaylee, Brianna initially responded really well to the Enbrel, and then it seemed to lose its effectiveness. It was so frustrating to see that she had a stubborn case of this crappy disease. So, we went back on a course of prednisone, upped the Enbrel, and then the rheumy decided it was time for joint injections. While it's not really the protocol for kids with poly, we had to try the next step. Her knees and ankles were injected (under conscious sedation) June 16. I don't know if it was the increased dose of Enbrel coupled with the injections that did the trick, but she is now doing better than ever.

I think the worst part is waiting for the right combo of drugs. I might ask your rheumy about prednisone and injections. My husband and I took the kids to a JRA conference where we met beautiful, articulate teens that had been living with this since the ages of 2-4, etc. They were thriving, active, involved in sports, dance, etc. Some of these teens had been on every combo of meds under the sun (even remicade infusions), until they found the drugs that helped. And they DID find drugs that worked!

In the beginning when we saw Brianna in constant pain, I could do nothing other than worry and research. It effected every part of our lives. I was so desperate that I had my PCP prescribe Xanax, and while I've only taken it a handful of times, it did help me to get some sleep. Please try to hang in there, Karen. I'm praying for some relief for your baby.

Vicky

Post #4219186

Top

Suzanne321

Posted Thursday, July 23, 2009 8:49 AM

Group: Forum Members
Last Login: Tuesday, November 03, 2009 2:54 PM
Posts: 870, Visits: 182

I can only echo what the others have said - it does get better. My daughter was dx'd at age 2 and is 6 now. Hearing that from other moms here helped me through the worst times more than anything else!

The worst part is the 'rollercoaster', when you see improvement and get your hopes up and then it goes away. But it starts to even out, I promise. Our daughter is doing so much better than we ever would have imagined when she first got sick and I know your daughter will, too. She has a different life than we had dreamed, but she has a happy life!

I wouldn't add a supplement without telling the dr. first, especially if she is still in the study.

Post #4219198

Top

Mom to Alex

Posted Thursday, July 23, 2009 1:49 PM

Group: Forum Members
Last Login: Sunday, November 15, 2009 7:33 PM
Posts: 86, Visits: 164

I'm so sorry...I have nothing to add as we are still struggling to find the right med cocktail for my son. He is also in what seems like constant pain. I am in the process of getting a disabled parking permit for him...broke my heart to have that paperwork signed...but we need it. And if the Enbrel we are adding doesn't help...we are getting a 'big kid' aka 'special needs' stroller through our insurance next month...it sucks that I need that for my just turned six year old. He should be running and playing...and able to tolerate a walk at the mall. Instead this morning I had to carry his backback into camp...it hurt his shoulders too much to put it on. This stupid disease sucks!!!

I just hold onto the hope that the doctors WILL find the right medication mix for all of our kids...I pray that it soon and for the strength to get thru all of this. One idea on the injections...we give Alex his while he is sleeping...he doesn't fight, so no tense muscles and no issues the next day. Our rheumy suggested this and it works.

My son has other special needs and I can tell you that from my experience with his other issues...it does get easier and you do adapt...but it does take time. One day you will realize that you are simply living your life with your kids. You may not believe this now...but you will eventually find your 'new normal.' In the mean time...take care of yourself.

All the best,

Karen & Alex, 6, poly (04/09)

Post #4219241

Top

Kymberli Mundwiller

Posted Thursday, July 23, 2009 7:55 PM

Group: Forum Members
Last Login: Thursday, October 08, 2009 4:07 AM
Posts: 36, Visits: 44

I am so sorry, and my thoughts and prayers are with you and your daughters. I know it is hard to watch a child in pain. It has to be harder for a baby. My DD is (almost) 12yo, so as much as I felt some of the same feelings, with her age, we can talk more and we can talk about the positives, and what may and may not happen together. With a younger child, that just isn't as doable. Sit and cuddle with her, and read books. We are praying for her, and all the little ones in pain. We are blessed that DD seems to get a break, and that makes the waiting for testing to figure this all out a little better. Constant pain is so much worse. I wish I had some wisdom. I just wanted you to know that we feel your pain, and take one day at a time. Get a nap with her, and see if that helps. Kymberli

Post #4219299

Top

Juile

Posted Friday, July 24, 2009 11:17 AM

Group: Forum Members
Last Login: Wednesday, November 18, 2009 12:48 PM
Posts: 101, Visits: 134

I remember feeling exactly the same way. I was consumed with worry and anxiety over my daughter's arthritis. I actually did go see my doctor because I could barely handle going to work anymore. He prescribed me an antianxiety medication that helped me relax a little and sleep better at night. But the fact is, that you are doing everything you can to help your child. Sometimes this disease takes a long time to get under control, but sooner or later your daughter will get back to her old self and be running and playing with the other kids. No one can tell you to stop worrying because that is something that is out of your control. Logically we all know that worrying and stressing doesn't help, but it's an involuntary emotion and we can't seem to stop it at times like this - it's a mom thing. At one point my daughter couldn't walk either and now she is symptom-free and off all meds. Hang in there, there is a very good chance that your daughter will get there too. In the meantime, if you find yourself so overwhelmed that your not able to be the mom you want to be, there is nothing wrong with talking to your doctor about it and seeing if he can give you something to help. If you don't like the thought of taking meds, a counsler might help you to sort out your feelings and get your emotions out so you can move forward with more strength.

Post #4219376

Top

« Prev Topic | Next Topic »

All times are GMT -5:00, Time now is 12:56am

Execution: 0.718. 68 queries. Compression Disabled.