Really dont know how to cope!

I thought I was feeling better on lexapro but having a bit of a meltdown.

12 year old daughter has been sick with joint pains and fevers for nearly 7 months and thought she was starting to get better, but now that the beginning of the school term is near (we've just had summer hols), her temperatures are going up and she seems to be creating new symptoms. She is moody as anything (probably normal for her age!), has a really bad attitude and would say 2+2=5 if I told her it was 4. She fights non stop with her Dad and I. I cant bear the thought of the continuous battle with school, aches and pains and explaining to my work that I cant make it in because my daughter is sick again and wondering if she's faking it to get out of school, which I feel really guilty for even thinking it.
To top it all we have just had a holiday with my parents during which she argued like usual and my Mum told me that it if I had parented better when she was younger she would not be so bad now.

This is my Mum who has always been my role model and almost a best friend. I feel really betrayed and as though there is no-one I can turn to. And its really difficult to type when I cant stop crying!! What I really feel like doing is getting into the car and driving away from it all which wont cure anything.

Sorry for babbling, but need to moan to some-one.

Thanks for reading.

thats ok, better out than in!
Now sounds like u could use a little help. What sort of doctors have checked out your daughters symptoms? Do you have anyone to talk to?

I think some of the hardest parts of parenting are when we are emotionally drained and they still need us. I understand the school battles and the work concerns from personal experience. Somehow, we (parents) manage to keep going. Hang in there, I'm sending some strength your way!

My heart goes out to you.

I hope you do not blame yourself for your daughter's condition and can see the depths of what your mother said to you as just a lie in an attempt to hurt you (and control you by extension). Having kids gives us a terrible time emotionally sometimes, especially when they are hurting and there isn't anything we can do.

Feeling depressed at the same time as the world truly is dumping on you, in both circumstance and acutely can leave you bereft of hope. Hang in there. You've come to a good place.

Thankyou everyone. Feeling a bit better this morning. Funny how things always seem worse in the middle of night! Rapidcycla, Heather is seeing a paediatrician who has consulted a rheumatologist and infectious diseases specialist. Heather has had heaps of tests which have all come out negative. The theory is that she has reactive arthritis and will eventually get better, but that is only a diagnosis of exclusion. She has also been referred to a clinical psychologist, supposedly to help her to cope with the chronic pain and fatigue, but I still wonder if they think she is exaggerating her symptoms (and so do I!).

She's also seeing a physio. She has lost muscle strength after being sick for so long, which doesn't help with her aches and pains.

Can't Stop Crying: I so totally agree with you. I often feel guilty for not being stronger. I try my hardest but sometimes I really need an instant recharge of emotional strength. Its something I often feel really guilty about, that I cant cope with everything 24/7 and be there for my hubby and daughter.

Thanks again.
Sarah

Hello, Sas123!
Even if you were not depressed, you would still be stretched thin by circumstances. Being depressed... well, you know only too well. I realize my words won't make the guilt go away. I can't get my own guilt to take much of a holiday.

The deep caring behind that guilt reflects well on you.

Sas123,

First off, I know how life can get super-crazy. Dealing with ones own issues can be monumental, but also being responsible for another creates another huge bag of stress, especially with a child, and especially when they are physically ill. I guess the only thing I would recommend is taking small pieces of time out of the day for yourself. I know, it sounds trite and somewhat ridiculous, but even 10-15 minutes out of the day to recharge your batteries doing something that you genuinely enjoy can be a boon. I'm not sure what you take joy in but if it's reading a book, going for a walk, watching crap TV, or just sitting and thinking about nothing for 10 minutes do it for yourself, and say that to yourself as you do it. It may help a bit.

As to your daughter's condition, chances are she is not faking and if she is, that's a sign she's going through some kind of stress at school which is a mental health issue. Whether it is solely a mental health issue, and from the doctors diagnosis it sounds like not, seeing a good therapist is a good idea, especially encountering health problems at such young an age. I myself have reactive arthritis and I've had it about as long as she has. I've always had issues with fever and aches, but when I was eighteen I had a full-blown debilitating episode that landed me in the hospital and unable to walk for three months. My right knee blew up like a balloon and I couldn't walk on it, it was so painful. I wasn't officially diagnosed at this point. Eventually the pain faded and I was ok.

Three years later I had an episode involving iritis in my right eye (always my right side, weird). You could actually see the accumulation of white blood cells in the form of a big milky spot in the middle of my eye. Thankfully I found an excellent ophthalmologist who requested my file from my stay in the hospital. They did $2000 worth of tests in one day, but didn't end up doing the one he wanted which was the HLA-B27 gene test, which often, but NOT ALWAYS, is a marker for Spondylitis, the family of autoimmune diseases that Reactive Arthritis belongs to. This is how I was introduced to the disease I had been suffering from for over ten years.

Again, with the aid of some drops my eye got better. Since then I've waxed and waned in how I feel, but thankfully (let me knock down a redwood tree to knock on wood) haven't had a major episode involving trips to the doctor or hospital. This is important for me right now since I have no insurance, ugh! That said, my health blows I'm constantly feverish, constantly achy. Sometimes the arthritis feels like muscle cramps in my feet and hands that won't stop. It's not fun. The temperature in the house gets down to the 50's at night and I have to sleep without covers because I'm so hot. I know this may sound strange, but sometimes it feels like my blood itself is inflamed. If you've ever had an arthritic joint, image that kind of feeling just coursing through your veins- it's kind of like that.

Your daughter may not have any of this. Hopefully she'll grow out of it. Many people do. Some people only get vague symptoms, others have chronic major events. Stress is a big factor. My stress level has been off the charts and perpetual for the last 8 years so my body just can't seem to handle it anymore and forces me to take life, at least physically, at a snails pace.

I'm not sure if you're aware, but there are some decent resources on the internet. The Spondylitis Association of America is a great resource. They have detailed information on spondylitis and all the related diseases, including reactive arthritis. They also have a forum that you and your daughter may find helpful in connecting with others going through similar experiences. I would link to their site but I'm new here and don't have the privilege. Just google spondylitis and it's the second item, then click on the "About Spondytis" tab at the top. On the left hand side you'll see a list of topics where there's a link to the page on Reactive Arthritis. To get to the forums, click on the Resources & Support tab. There's a link to "Message Boards & Forums" on that page, along with a bunch of other resources

I hope this information helps and finds you and your daughter in a healthier situation.

Good luck

SeriousNinja.
Thankyou so much for your reply. You would not believe how much googling I have done in the last 6 months. Initially we thought she had full blown JRA, but her fevers and pain have never been bad enough for that. The first 3 months she had quite severe back and knee pain. Now she has milder pain but lower back, elbows and knees. Some days she's fine, others she's totally fatigued and in pain.

We have another appt with the psychologist next week and the paed the week after.

Thanks again.
Sarah

Sarah,

Since you mentioned lower back, maybe it's ankylosing spondylitis which is also outlined on the Sondylitis Association's (SA) website. That version typically appears at first in the low back. That said, I have always had back pain, but I generally attributed it to scoliosis. Many of the diseases in the spondylitis family bleed together, so-to-speak, involving similar symptoms. Given enough time an individual will display enough symptoms to fall into a specific diagnosis, yey.

One thing the two of you might consider is starting a journal describing how she's feeling. I'm not talking about spouting poetry here, but more of a record of what's going on in her body and how she's treating it. I try to do that, in a more limited sense, but maybe write down energy levels, what physical activities she participated in and for how long, what she eats, any stressful events of note. This may help pinpoint any triggers for her episodes.

Some things that might help, vitamins. I know it sounds hokey, but they may be able to help especially with the fatigue. According to the SA, "Varying levels of fatigue may also result from the inflammation caused by AS. The body must expend energy to deal with the inflammation, thus causing fatigue. Also, mild to moderate anemia, which may also result from the inflammation, can contribute to an overall feeling of tiredness." So maybe a multivitamin? Either that or maybe she can become addicted to broccoli I take a B-complex vitamin and a B-12 specific vitamin which helps a bit. Stress is huge though, so see about ways to alleviate/cope with that - definitely something to talk with the psychologist about.

One last thing I want to mention, it's wonderful that you're being proactive with all of this. While there are great doctors out there, there's nothing quite like doing your own research. If she ever gets a final diagnosis and medication, I strongly recommend doing research on both. I also have rosacea and had a BAD reaction to the antibiotic I was given for it involving drug-induced lupus, liver damage and depersonalization episodes. Granted I was one out of twenty thousand patients who ended up with that reaction, but if I had left it up to the Rheumy I saw for the inflammation issues I thought were due to my own reactive arthritis (but turned out were due to drug-induced lupus) I would've ended up on a liver transplant waiting list.

I wish you both the best of luck. I know what she is going through, and it's not easy. I too know what you are going through with depression, and that is a heavy enough burden on its own, so my heart goes out to you.

Take care

Awww Iam sorry you going through this.Yeah at her age thats normal pre teen issues .Iam 28 now those was the things that I did too my parents and I was not trying too do it just too do it I dealt with peer p and had bad mood swings that I could not control even now that Iam older I have to deal with the mood swings now .And at that age she dealing with peer p and trying to fit In at school with the clicks .Huggs