Parents of "normal", "healthy" kids just don't seem to really get it. When your kid is sick and running a fever, yes it's scary, yes it sucks, yes it's sad. All that and much more. When a child with a medically suppressed immune system gets sick it is down right frightening, frustrating, maddening, stressful, I can't even begin to find all the words I need to express how I am feeling. Jenna, along with SO many kids just like her, is on some heavy duty meds. I really don't even understand them or how they work. One of the meds she is on is a chemotherapy drug. Yup...used to treat cancer. Her dosage of that was recently doubled and switched from oral consumption to a sub cutaneous injection. That scares the He!! out of me.
Since before Christmas she has had this nagging cough. Nothing major. Just a nuisance that wouldn't go away. This past Monday I kept her home from school because the cough had a new friend. A headache. So we went to the peds office. Couldn't find anything obvious. At that point she didn't even have a fever. Even though there was nothing obvious she was put on three days of Zithromax to try to battle whatever was ailing her. That night the fever started. It has been all over the place. As high as 104. As low as 99.2. Is it influenza? Beats me but even if it is I know there is nothing that can be done other than fluids, rest and Motrin. So that's what we have been doing ALL week. She hasn't been to school since Friday January 8th. From Thursday afternoon through Friday late morning she was fever free, headache free. Just still that stupid cough. So, I thought maybe she was coming out of whatever she had. It was SO beautiful here yesterday. I thought some fresh air and sunshine was in order for us. Off to the park we went. How harmful can that be? We were there about 30 minutes and she suddenly looked awful. Completely wiped out. Headache was back as well as a tummy ache. *sigh* I was hoping she was just on the swings to long? No such luck. Got her home, took her temp. Son of a gun it's back. Nothing major. Just been hovering right around 100. But still. It's there. I really don't think she has any kind of major illness going on. It's just that with the meds she's on she can't fight off whatever it is she does have. But stopping the meds means her eyes and joints get worse. We can't win. What am I supposed to do for her?
Well I don't know how cathartic that was but it's out there now.
8 comments:
My name is Ross I am from Kingston, WA and I know how your feeling. My daughter was diagnosed with JRA and uveitis two years ago. She was having trouble walking in the morning and her joints were swollen so we went to the doctor and got the bad news. Why my kid? We have always eaten healthy and done the right things. We didn't even get her immunized for fear of complications. She was brave through the joint injections and we haven't heard from her swollen joints in years. But her uveitis has continued to give her problems. We were doing drops of prednisolone up to 6 times per day. She developed cataracts so we started doing other drops as well. All the while doing weekly injections at home of methotrexate as well as monthly remicade infusions. Her eyes cleared up after about eight months. And stayed clear till this summer when she was bit by a friendly dog and got an infection in her hand. At our next opthamology appoitment her uveitis was back. So we increased the frequency of the infusions. And its been gone for six months. Then on Monday January 11th, we had a routine checkup knowing in our hearts that she wouldn't have any cells in her eyes. But the doctor told us that it was back. This has felt like the worst week ever. It's so frustrating to have my hopes crushed like this. We have been keeping her out of school half of the time to decrease the chances of her getting sick. But I feel helpless. My wife is so distraught and I cannot console her. I am so sick of my little angel being "sick".
Thanks for listening. I don't have anyone to vent to that understands and it sounds like your in a very similar situation.
You can email me if you want to talk or have any questions. We have been doing this for what seems like forever.
kingston@oaktablecafe.com
Wow...reading this got me very emotional. Your daughters story sounds so similar to Jenna's. I am so sorry that your daughter has to continue her battle. It just breaks my heart. I find myself getting increasingly angry that so many people just don't "get it". How old is your daughter? How is her cataracts at this point? Jenna can't do the pred forte drops anymore because they make her pressures to high. I know the Lotemax is NOT doing the job for her. She goes back to the opth on the 27th. Not looking forward to it. I get my strength from Jenna. She is so brave. She amazes me :) Please keep in touch. I want to know how it all goes.
My daughter is 5 1/2 years old. She hasn't had problems with pressure in over a year. We did lotemax drops twice a day for a couple months and the pressure went down. Those drops were even harder because they hurt her eyes and she would cry when we had to do them.
After 2 years of drops and infusions and methotrexate I am so mad that it hasn't stopped. We have another appt with our opthamologist on Monday and if we get bad news, if the cells increase, then I don't know what our options are.
Thank you for writing back.
How is your daughter Uveitis doing? Are you doing inflixamab infusions or the at home injections?
Amy,
I am so sorry to hear about Jenna.. I hope that she is feeling better soon! I know I dread it when Ayla has to start school...I feel for all of these kids, you want them to do everything that everyone else does but sadly for them, they have consequences...ugg...i hate this disease!!
Hi guys! I'll probably ramble a bit and my words will probably be insignificant but just reading this has put my woes into all perspective. My name is Abbie i'm 33 and I live in England (I read your post Amy on the Methotrexate group page on facebook and got this link from there) and i'm on Methotrexate among alot of other stuff for severe PsA. There was I feeling sorry for myself because the pain has got really bad again lately, I need another steroid depot injection, have an infection I can't shift and i'm finding it hard to carry on with my everyday life. Reading the above has really given me a wakeup call. I'm an adult, with adult undertanding and pain threshold and had a healthy childhood. It must be hard for you, your children and your families to be going through this and my heart is with u all. I have the urge to help in any way I can. Obviously that's not very practical especially as i'm so far away but i'm always available If you'd like to ask anything or just vent. Like most people with a long term condition i'm a fountain of knowledge on Arthritis and meds so feel free to quiz me. You're all probably wandering why I've even bothered commenting but If you want to get in touch you can do so on abol_paxtonie@yahoo.co.uk. Go well in your journeys Abbie X
Sorry it has taken me so long to comment back everyone and THANK YOU so much for you comments!!
Ross: How did her appointment go yesterday. Please let me know. Jenna's eyes continue to be a battle. We go Thursday for a follow up. I do not have high hopes as she has been complaining a lot. We do MTX and Humira injections at home.
Lesli: This is why we considered home schooling :/ I hate her being exposed to all those cooties!! Kids are just nasty. BUT...as my husband put it...we can't stick her in a bubble. She needs to live. AND...I am SO not cut out for homeschooling. *sigh*
Abbie: Thank you for your comments. YES...it IS indeed hard on us as parents and hard on our kids. BUT..we also have no idea what it's like to be an adult dealing with this ourselves. So please don't downplay your personal suffering. It is STILL suffering. Perhaps our kids are better off because they know no different? Who knows. Thank you so much for your offer to help. My mind is BLANK right now :P But if something pops up I will for sure be in touch :)
Amy - I don't know you, but found your blog through another JA blog.
How is Jenna feeling?
My daughter is currently struggling with the same cough/fevers/etc but her doctors can't find a specific problem.
It's frustrating, scary, and your words ring so true.
Natalie: Nice to "meet" you :o)
I was just reading your blog. Wow...such parallel lives huh?! Your little side blurb under "About This Blog" made me smile. "Isn't it just growing pains?" OH! OH! How many times have I heard that?! And, "REALLY?! SHE has arthritis??? Are you sure?" I am never really sure how to respond.
Anyway thanks for asking about Jenna. I am behind on my updates :P She is currently *say it really quietly* fever and infection free *shhhhh*. She is still very tired and rundown which makes me very nervous. I keep waiting for the sickness to hit. Nasty germy little buggers at school. Ugh...and grocery stores, restaraunts, anywhere really. *shudder* I am hopeful that Summer can be a time of rest for her so to speak. Warmth, sun, swimming, no school. Just gotta make it TO Summer!! I hope your little one is feeling better. (((hugs)))Momma!
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