Sunday, February 24, 2008

How is [your child] doing?

I haven't posted here for awhile! Mainly because there haven't been very many general questions to answer for anyone lately! But I did want to include a question (of mine) to another JA mom. I had asked if she had put further thought into starting a blog, and added the following question as well: "How is [your child] doing?" And my friend Wendy answered with words that I thought were very profound. I agreed totally with them, and wanted to share them here. My friend Wendy gave me permission to do so:

"[My child] has been doing so fantastic that the idea of a blog is far from my mind. It's funny, when things are going well, it's easy to forget she even has this disease. And when things aren't, it's impossible to think about anything else."

How very true that is!!! I've been there--both places! We are grateful that for Anna and for us as her parents--especially lately---that things have been going relatively well, so unless it's time to administer the medications, it's easy to forget that she even has this disease. How I wish that all JA parents and patients could be in that place.

Thursday, August 9, 2007

Childcare and the diagnosis of Juvenile Arthritis

Question: . . . thank you for putting up this web page and sharing your story on-line. This is just the sort of thing I have been craving. Like you, I have been reading, reading, reading since my 2 year old was diagnosed with JIA just a few short weeks ago. But none of the medical literature or arthritis society brochures can tell me what it is going to be like as a parent to deal with this . . .even a mild case of JIA seems to have many lasting implications. I want it to go away and never come back, but that doesn't seem likely. Since this began, we had to pull her out of daycare because she couldn't walk. I've been off work for several weeks and I can't imagine sending my little girl back to daycare, even though she has had joint injections and is walking better and in much less pain. She is still just so fatigued. I don't know if this fatigue is normal or if it will go away.

Anyway I was wondering what you did when your beautiful little girl was first diagnosed.
sent by WG of Canada

Thank you so much for your kind words!!! I created the page for the very reason you speak of . . . . it's the type of page I was craving when Anna was first diagnosed. I read so many medical web pages and information from various arthritis organizations, but the bottom line of what I wanted to know was how families were faring after the diagnosis, and what type of life/quality of life could I expect for my daughter in the future? I'm always very happy when other parents find the page (because then I feel like I'm accomplishing my purpose for traveling the Juvenile Arthritis journey!)----even though I'm sorry that you had reason to need to search for Juvenile Arthritis information.

When Anna was diagnosed, I was a stay-at-home mom. She was two at the time. I was a stay-at-home mom from 1990 until 2002, when I began working part-time. There were many times over the years (especially when Anna has had frequent doctor's appointments when her eyes have flared) when I wonder how it would work to have a full-time job and try to stay on top of everything. Those first few months after diagnosis were filled with physical therapy appointments, blood tests, and various doctor's appointments (ped. Rheumatologist, ped. Ophthalmologist, etc.) But I do know that there are some moms who do it. I don't know if you checked out the message board that I mentioned on Anna's JRA Page (see the link on the side bar here), but there are some moms who post there who work full-time and still manage (very well) their children's care and health.

My part-time job has been a real blessing. The job is with my church, and the pastor who hired me, while having certain expectations regarding getting the required work accomplished, was also very understanding and flexible went it came to Anna's various appointments. (Since he was Anna's pastor, he was also concerned about her health, as the head of our "church family.") Because he was so understanding, and because I have great respect for him, I tried to be intentional about scheduling Anna's appointments on my days/afternoons off when at all possible. That pastor has since moved to a different church in a different county, but my new boss/pastor is just as understanding when it comes to flexibility.

Because Anna's arthritis has always been mild, and her biggest issues have been with her eyes (the uveitis), we haven't dealt with a whole lot of painful mornings for her. That has made life easier than for those whose children tire out easily or have major pain issues at various times of the day. Anna did go through a period of time when her legs/knees would tire out easily, and there were also several years when she would have heartburn (esophagitis) issues (related to the medications she was taking). Anna did attend part-time daycare for about two years (for a few hours three times a week), but if I had had more of a choice (the daycare was at our church, and it was free since I worked there), I probably would not have chosen that particular daycare, or else I would have been extremely proactive in educating the director and Anna's teachers about Juvenile Arthritis. At the time, I didn't sense that they had much interest in learning much about Anna's issues (in all fairness, after becoming friends with the director over time, I think she would have been interested and concerned had I needed her to be), and because Anna's issues were relatively mild (waking up from a nap with a stiff knee) and because she was not at the center for a full day, we muddled through those two years without any major incident.

Since Anna started school, whenever she has medication changes or a period of very frequent doctors' appointments (like this past year, when her eyes flared), I keep her teacher, the school nurse, and the school principal informed of all that's going on with her. (Her doctors practice in a town about 20 miles away from our town---on the other side of a large city, so a trip to a specialist for Anna can sometimes take at least three hours, and if it's in the middle of the day, it can take up more than half of Anna's school day).

I've heard of other children who have experienced fatigue, so I know it's not unusual. (Disheartening, I know!, but sometimes part of the "package" of Juvenile Arthritis.).

I hope this information is helpful to you in some small way. And I hope that if you have questions that I can't answer, that you will feel comfortable in posting to the message board I previously mentioned. The moms there are SO friendly and kind, and they have become true friends (even though I've only met a handful of them in person!). What one of us can't relate to, usually someone else can. We bring a variety of diagnoses and severity of disease and experience to the table, so I find that board SO beneficial.

Friday, June 15, 2007

Any Uveitis Symptoms?

Question: "I'm curious about what Anna's eye are like when she has a flare? Do they hurt or become red - what type of symptoms?"

Answer: Anna doesn't exhibit any symptoms of uveitis (although some children do). The only way we know that her eyes are flaring is by keeping our appointments with the ophthalmologist, who gives her a slit lamp exam. That's how he sees the extra white blood cells floating around. While I'm glad Anna's eyes don't hurt or show any extra redness, we then don't have any "visuals" to know how effective the treatments are. We just have to wait until the next ophthalmologist appointment.

Tuesday, March 27, 2007

Weekly Methotrexate Injections (Nov. 11, 2006)

What are the MTX injections like?

Pretty awful! I hate giving them, and Anna hates receiving them. My husband tried giving them to her, but he must have been worse than I am at giving the shots, because she tearfully told us that she didn't want "Dad" to give her shots anymore. Anna just had a flu shot, and she was psyching herself up for it, and she was shocked at how fast and "easy" it was compared to her weekly methotrexate shot. Of course, the nurse at the doctor's office gave it to her. Anna told my husband, as soon as he came in the door that night, about that flu shot, and how is was SO easy compared to her Methotrexate shots, and she said, "But of course, the nurse IS a professional, and mom isn't!" :o) Anna usually feels like she has to throw up immediately afterwards.

How often does Anna need them? Once a week. We give them on Saturdays.

Are they harder than a typical vaccination? Anna (who just came in the room) says, "Yes, because the nurses at the doctor's office are experts, so it doesn't really hurt as much." :o)

Does the pain linger after the shot? Anna says, "Sometimes."

Does Anna Take This All in Stride? (Nov. 11, 2006)

Anna sure is a pretty girl. Does she take all this in stride (sounds like she does), or is it more of a struggle as she gets older (more pain, more problems with it socially)? Do her school and friends understand the reality of her situation? Does it ever keep her home from school or social events?

She definitely takes everything in stride (except maybe for her weekly shots of Methotrexate). She's pretty much pain-free (because of the Methotrexate, and the lack of uveitis symptoms). We are actively involved with the Arthritis Foundation, and we do the Arthritis Walks, so we have a lot of "Kids Get Arthritis, Too" t-shirts. She wears them frequently, and she told me one day that all of her friends were asking about arthritis, and because Anna's arthritis is so mild, she really didn't know what to tell them! So at the next appointment with her PRh, she asked him what arthritis is. She only knows that she takes medication and goes to Hershey for doctor's appointments a lot. She really doesn't remember the pain that she experienced in infancy. We are also blessed with a great neighborhood and a great school district. I don't know how many social-related problems she might have, because my son (the 13-year-old) struggles with stuttering (has since he was in Kindergarten), and none of the students in all his years in our school district have ever teased him or have given him a hard time. It's amazing, and GREAT! Before Anna started school, when my oldest daughter Abby (now 16) was in fifth grade, organized a school-wide fund-rasier for arthritis. (There was another child in fifth grade who had a severe form of arthritis.), and the whole pediatric rheumatology department at Hershey Med came with the Arthritis Foundation to help with raising awareness with hands-on activities. Things like that really help, and the Arthritis Foundation is usually eager to help with such events.

What caused the arthritis? Any guesses? (Nov. 22, 2006)

Do you have any guesses what may have brought on the arthritis?

In hindsight, we really believe that Anna had arthritis since her infancy. Some parents feel that their child's arthritis may have been triggered by an immunization, but since babies are receive immunizations within the first few days of their lives, it's very difficult to even say in our case. Anna is my third (and last) child, so my husband and I had experience with babies, and there were things about Anna that just weren't right, but we couldn't figure out what was wrong. As an infant, while most babies fall asleep on car trips, Anna would wake up in the middle and scream and scream. I would even stop at a rest stop and try to comfort and console, to no avail. She would settle down after about 20 minutes. Also, even at just a few months of age, when I would change her diaper in the mornings and try to get her leg in and out of a blanket sleeper, she would fuss and cry. She would fuss and cry when I would try to get her out of her high chair, and I struggled with her to get her to bend her knee to do so (now I feel horrible about doing that, knowing that her knee was probably painful with arthritis, but I had no idea at the time!). While most kids wake up from a nap or a good night's sleep being rested and in a great mood, Anna would always wake up fussy and crying. She was a fussy, fussy baby, and was usually only happy in her swing. (But you know, babies can be fussy for many reasons, so I wasn't thinking arthritis!) When she started to crawl, she didn't really crawl like other kids (but all kids are different, so again, I wasn't thinking arthritis!)---she would scoot around on her hands and one knee and drag her left knee behind her. When she began walking, that's when we noticed a sometimes limp (not all the time), and that's when we started questioning the family doctor.

Uveitis and Eye Drops . . . Duration (Nov. 11, 2006)

So how long was Anna taking eye drops before the next treatment (Vioxx?)? What were or are her main trouble spots? Have her eyes been involved for awhile? It is uveitis that she gets in them? If so, how long before it would clear up and/or come back again?

Well, the treatment for the uveitis has changed with her pediatric ophthalmologists! We started out with one ophthalmologist (and we stayed with him for well over a year, but our inner nudgings finally got the better of us, and we gathered up our courage and got a second opinion and changed doctors---I really hate to do that, but after we did, both Anna and I said many times, "I'm SO glad we changed eye doctors!"). The first ophthalmologist (Dr. #1), would put Anna on mild steroid drops, called Fluerometholone (I can't guarantee that my spelling of some of these medications is right!!!), or FML drops. He would put her on drops and then make an appointment for two weeks to check on her eyes. One time, even with the drops, her eyes flared even more, so he had us giving her Pred Forte drops (steroid drops again, but more potent than FML drops). We would give these drops to her four times a day--around the clock--every six hours. As Anna's eyes were improving, he would have us taper down the drops. Her one eye was clear for a good amount of time.

When we switched eye doctors, (to Dr. #2), the new doctor had a different philosophy. Now he would try to talk me into putting Anna on Methotrexate (but the PRh has to prescribe that and monitor that, and at the time, the PRh told me that he felt that putting Anna on Methotrexate for mild uveitis and arthritis was like trying to shoot a tiny target with a canon. The PRh just wasn't ready to do that, and frankly, neither was I. Anna had a needle phobia for a very long time (and the majority of kids I knew of who were on Methotrexate ended up having to have it by injection because of stomach issues). Her eyes usually just had a trace of inflammation, but Dr. #2 would say that he just wanted to get Anna's eyes totally clear, even though a trace of inflammation wasn't anything for me to get really worried about. He prescribed FML drops, but only once or twice a day (depending on how much mild inflammation he saw), and we would see him about every 2-3 months. I think we saw him for about three or four years--last year, he moved to Cincinnati . . . I was SO sorry to see him go. I really grew to like him immensely, and Anna and I both missed him for a very long time after he left . . . it took a little while to get used to the new ophthalmologist, Dr. #3.

Anyway . . . . before Dr. #2 left the area, the PRh decided to put Anna on the Methotrexate, because Vioxx had been pulled, Anna was starting to experience some stiffness if she sat for 20 minutes or more, her toe was really puffy, and the PRh was concerned that the longer Anna was on eye drops, albeit mild ones, the greater the chance that she would develop cataracts. It was just time to take the next step, and because of all the issues, the PRh was at a point where he didn't hesitate. He just said, "It's time to put her on Methotrexate." Dr. #2 was very happy that we finally took this step, and he was able to taper the eye drops to the point where we didn't have to give any at all! I think Anna had been on eye drops of some sort for about four years at that point. So we went for several months on oral Methotrexate and no eye drops at all. Anna's joints and eyes were quiet for several months, so the PRh said, "Let's see if we can lower the dose of Methotrexate. If all goes well, maybe we can get her totally off medication before school starts!" (This was in the spring of 2005.) Well, lowering the dose of Methotrexate (just 2.5 milligrams) caused Anna's eyes to flare---at the very next appointment. Dr. #2 was a bit frustrated. Anna's joints mildly flared, also. I think that summer, we were in Hershey, PA (where both of Anna's doctors practice) at least every two weeks!

Dr. #2 recommended a colleague of his, who is in private practice, and we transferred to him (Dr. #3). Dr.#3, too, has a different treatment philosophy than Dr. #2. He doesn't fool around with the mild FML drops, but put Anna on the Pred Forte drops (twice a day, I believe). Anna's eyes were improving, but then her pressures began to rise to a worrisome level (Pred Forte drops can cause that). So in the 18 months that we've been seeing Dr. #3 (usually every six weeks, but we're now at every 8 weeks), we've increased the Methotrexate a few times, (when her pressures began to rise, he took her totally off the Pred Forte drops). Since the last increase (we're now up to 17.5 mg weekly), Anna's eyes have been steadily improving. They're not totally clear yet, but two weeks ago, Dr. #2 just saw an occasional cell, which is even less than a "trace." (With the uveitis, you start to learn this terminology!) He's greatly encouraged, but said we can't lower the Methotrexate dose yet. (Frankly, I'm very apprehensive about even trying to lower the dose in the very near future!).

I'm not sure if that story answers your specific questions about uveitis, but if you have other questions, feel free to ask!