OK. So I sent Maddi off to school today, feeling unwell, pale. She has 'the look' - like she is slipping back into 'it'.
The pain is slowly coming back. She gently knocked her shoulder on a chair yesterday and that bought on a bad pain in the shoulder, a 'teary' one, lasting longer than normal.
Also the cold is making her feel crappy - and the weather here is TERRIBLE today.
She felt a little warm - but I did not take a temp as she relies too much on that damn thermometer from when I was recording her temp 3 times a day.
God, I hope the fever does not come back.
At least she is not as constantly or as severley nauseated as before we took her off naprosyn.
So I guess, this is my question - How long do I wait before giving her the pred in my fridge. We are meant to try not to give it to her without a dx - but that is taking too long. Do I wait until she is in another bout of severe pain and spiked fever? Or do I give it to her soon, so to give her relief form the 'miserable' feeling of being ill, achey and the 'odd' pain.
See, If I use pred - we could mask a symptom that may help a dx - but its been 12 months waiting!
Maybe I should give her a 6 week course of pred as our paed has wanted us to (not the rheumys) - just to give her a break.
I am sick of sending her to school ill. I want to make life easy for her. she is suffering socially, but at least if she is on pred she may feel well enough to be confident to 'play' at play times, or at home on play dates.
I am so SORRY about my LONG posts. But you guys really do help (more than the docs at this stage!), and as you know form personal experience, and I don't - help me???
I am normally strong - but this is starting to wear me down. I hate giving out 'tough love' to my 7yo, especially when I know she is suffering at school. Hell, even grown ups don't like to be at work when they feel crappy.
So pred - or no pred? I think I want to give her pred - but worried it is the wrong thing to do.
maybe I need to ring the rheumys.
Gosh that's a tough call. :( I don't know! You're right about it possibly masking symptoms that you NEED to know. Why don't you start with giving the RD's a call, and see what they say. Then call you regular Ped. and see what THEY say. Then let us know. Heh sound like a plan??Awwww, so sorry for you and Maddi!! I agree, it may mask something that could help them DX...but the poor little thing!! I'd probably make a call to the Dr, see what they said. Sorry I can't give you better advice.....(((hugs!)))Thanks guys!
You know what - I will ring all the docs, and they often disagree. our paed says give her pred for 6 weeks - our rheumys say please try not to use pred to give us more time to dx - but how much time- months? years? its already been long enough.
I think I will probably use the pred - its the only thing we know that gives her actual real relief from most symptoms, makes her feel 'good' (not that she'd remember what that was like!).
And heres the punch line - you know what - there is one more week until school holidays and High School Musical 2 is coming out on 'cable' tv and she wants to have a little party with her friends to watch it. At the moment she will definitely feel sick if she does this. But if she has pred she may just feel really well and actually enjoy herself for real!
And then - after that short course of pred - we can get back to 'mucking around' with symptoms and meds and tests - if we have to.
I think it would be a great break for all of us to see her actually have fun and build up a bit of energy to get through the next 'stage' of this nightmare - whatever that may be.
But I will ring the docs first. I say bring on the High School Musical Party! a positive experience for the family.
waddya all think??? am I really crazy?
Right now I need to sign off and go do kinder duty for my 5yo. keep the advice coming in - thanks a heap. All the replys help give me a 'boost' - even if you think its not much help - it is!
You're not crazy at all!! You're a mom, who's poor baby is sick, and no one can tell you why. And yet you have this one little magical pill that makes her feel better, but might be hiding what's really wrong with her. It's a legitimate dliema, and you are TOTALLY sane in wanting to see your daughter feel good for once. There's a line that you cross at some point, where it's not worth it and everyone just needs a damn break (sorry) If this is it, then hun this is it!!I think your "crazy" plan makes a lot of sense. That poor baby needs a break from the pain and so do you. By all means, talk to the Drs. first, but since the pediatrician agrees and the RD hasn't come up with anything yet, I say go for it. It will do you both a world of good to break the cycle of pain and sadness. My thoughts and prayers are with you and your sweet little girl.Mystery, I missed this post and tried to PM you just to say what a kind and caring mom you are (but your IN box is full!). I'm so impressed by how "together" you are, and in light of all of this frustration you are feeling, you still post such nice comments to others in pain. How fortunate we are to have you as a part of this forum, although I hate for your and Maddi's sake that you must be here.
Anyway, I wish your little babe some relief and a quick diagnosis. Bring on Zach and the gang!
Best of luck!
Hi darlin' my thoughts are with you. You are so brave. LyndaYou don't ever need to apologize for a long post! My goodness, with you and your little one and the rest of the family in the midst of such turmoil, I think you do remarkably well.
I agree with what most everyone said. Definitely try to reach the docs first. I would ask the rheumy just how long you are expected to hold off while you watch your baby in pain. I hope they both tell you to give Maddi the course of pred. and let her have a break from all this!
The movie party sounds like a lot of fun for her and something good to look forward to.
Keep us posted, Sweetie. I am anxious to hear what the docs say.
Gentle hugs to all,
Nini
Talk to your drs, first, but I would go for the prednisone for a little while to give everyone a break. Just a couple weeks ago I had to decide whether to quit the meds which are finally helping in order to get a dx, or stay on the meds and not know with certainty what it is. I chose the meds. It has taken 2 years to feel better and although a dx is very important, I need a break for a while. We are planning to re-evaluate in 6 months.
How long would the pred stay in her system? Can she do just a short term burst? I did this several times to get through the tough parts.
Laker
I just got back from kinder duty and what aresponse! You guys are unreal!!!
Well, surprise, surprise, I got a call from the school while on kinder duty to say Maddi was at sick bay. I knew it! Feeling really nauseated and sick.
None of us can ever plan anything with Maddis illness 'intruding' on all of our lives at any moment.
Problem is - she started shaking uncontrollably and her heart was racing - a mild temp. I have a feeling this is a panic attack, it has happened before when she feels really sick and close to a vomit (sorry!). (and during a 'bout' or 'flare')
I don't really know if it is a full blown panic attack or a normal symptom of the dreaded 'illness'.
So I am sure I will put her on pred. She has had enough and so have I. I will call all docs first to let them know - and give the rheumys a chance to talk me out of it.
Will let you all know how I go with the doctors.
You know, at this point it's probably Panic Disorder. Plain and simple. I started having attacks when I was 11, so I can TOTALLY see her getting them. Especially with all she's been going through. Is there any way you can get a doc to put her on something for it? I know it's sort of risky at her age, but at this point the last thing the poor girl needs is another stresser. Ya know?? Perhaps with those attacks under control, you can figure out if the nausea is from her illness, or just stress.I am so very sorry for you. I wish life were easier, and especially for little Maddy...I guess I would have taken her in to let them check her out again. It is easy for them to dismss you when they do not see her at her worst. I just hope they find something and start treating your poor girl.
Mystery...have you ever thought of homeschooling for right now. You cannot have a "normal" life, but why not eliviate some of the stress of going when she is feeling like this. If she is homeschooled just until they figure this out then that might allow her school days to be flexible enough to give you and her some rest. Just a thought. I don't know what the rule are for that, but I think if it were my child...I would not send them to school...especially on days she is sleeping well.
Take care of yourself too. It sounds like you might need some outside help. Do you have some sort of support group that you can meet with face to face?
I am thinking of home schooling next term. It has always been at the back of my mind but we wanted to perservere and try to encourage her to go to school - mainly for social reasons. But now we feel like we have tried everything , meds, no meds, half days, days off etc. But every day is so hard for her. The problem is there are definite nerves/anxiety involved on the days she feels sick (which is every day...), which is understandable. But by taking her out of school I am worried that she won't learn how to deal with 'uncomfortable' situations. I know when she feels 'better' she is much more confident. She is still only young - so maybe she has plenty of time to learn these social skills later.
It feels like at the moment dealing with the illness and the associated anxiety at school is all too much for her. I will be speaking to the school and see what they think.
Our 5yo son is starting school next year so it will be tricky to make him go to school while maddi is at home - maybe it will be all sorted by then if we take next term off. (i suppose thats life!?)
I am a little worried as to wether I will ever get her back to school if I take her out. But yes, at the moment it appears almost impossible for her. I do want to make it easier for her.
As for me - I think I am ok. I have good family support and I really do believe I would seek counselling if I needed it - but so far talking to those close to me seems to help enough. I don't feel out of control - yet!!!! But if I do -I promise I will seek help. i am all for looking after the Mums first so we can be good parents!
Maybe a weekend of pampering would be good though...hmmmm...
I would say a weekend of pampering would be a definite YES!
Let the school thing with your son work itself out in due time. Right now it is what is good for Maddi and YOU. I know the nerve thing can be disconsorting, but I think if the medical is solved the nerve thing can be dealt with. It's just like if your car is going haywire and you are guessing at what is wrong...a whole host of things will continue until the RIGHT thing is fixed. Home is ALWAYS a safe haven for kids, as it should be, and for kids with illnesses it is all the more. I think moving her home is the best thing for right now. If things get better it is always an option to have her put back. The social thing will be ok...she's a girl...she will NOT suffer socially!!! I worry more about homeschooling boys to be honest...and that is a teacher's perspective with an early Childhood degree.
Just know that this is a place that you can post and vent and fret or whatever YOU need to do. Go and pamper yourself, and draw some time AWAY. Love ya, shel
Hi dear, yes I can see the benefit of going to school with other children , but it must be a big strain for her to try to keep up, not let the other children see how sick she is, it is always hard when children are 'different' in any way.
My son suffered from terrible ear aches and so was in pain in school a lot. He took shots (was allergic to milk and all sorts of things, chocolate, dust, etc.), but still suffered and was given powerful antihistamines that made him drowsy. It was a nightmare until we found out what it was. He fortunately outgrew it at 15 or 16! but all those years were awful.
I hope you can find out what's the matter with her. I'm thinking of you. Lynda
oh sweetie, I really feel for you and Maddie! It's so sad that she has to go through all this. I say give her the pred. and a call to her doctors are definitely in order. Maybe if they see her now, they will be able to figure this out.
I homeschooled my two boys (who are 20mo apart) when they were younger. Our eldest had numerous (serious) learning disabilities and although I only did it for a year and a half and it is the best thing I could have done! I let them sleep in and we started in our jammies! It was a very special time for us. When they went back to school, they were very confident and social skills were fine. My oldest boy just graduated Highschool at 17 and Joined the Air Force. Our youngest is graduating this year and just turned 16. Today he got a job at a very prestigious computer firm doing CAD. When we moved, the elementary school tested my youngest who just turned 5 that week and he scored 100% on his kindergarten, first and second grade tests. Both boys were reading six grades above grade level. With a lot of one on one attention I was able to help my eldest overcome his LD so he never needed help in school.
Sorry this got so long.... (((gentle hugs))) I hope this all gets sorted out soon... I will say a special prayer for your family.
Mystery, if you do decide to go the homeschooling route and start to explore info on various curricula, feel free to PM me. I worked for 10 years as an Advisory Teacher for a major K-8 home instruction school that has students all over the world. Several of my students were home-schooled by their parents for health reasons. While it's a really personal decision for everyone and different folks have different points of view, I agree with the other posters that it can be a great chance for a child to work at her own pace.
Best of luck to you!
Thankyou all!
Maddi is having a good day today - the weather has changed to warm (though it will get cold this evening). The sudden drops in temp seem to have a huge impact on her.
She had a play at a friends house and it went really well. She said she didn't feel well - but just kept playing anyway - which is great.
I rang the Paediatrician yesterday and he ordered a blood test to check her levels - just in case I use pred (still haven't yet). Haven't heard about bloods yet so I figure there is nothing dramatic.
This thing is up and down to varying degrees from one day to the next. It may average one day in every 5 where she can 'cope ok" with normal activities while feeling unwell - the rest are too hard.
So I am still hanging in there today with the pred thing. Haven't heard back from the rheumys yet but they know of my intentions.
There is no doubt she feels more comfortable at home - of course. I am still thinking of home schoooling next term if she doesn't improve dramatically (we can only hope!). I will talk to her teachers and see what they think as they have been wonderfully understanding and supportive through everything so far. I get the feeling her class teacher is thinking attending school is too hard for her right now.
so - still one day at a time - just waiting for that 'weak moment' when I pop her the pred!
By the way - great to hear the success stories of kids who were home schooled! I don't feel quite so daunted as I did in the beginning. If I did do the home school thing I would hope it would be temporary until we get her back to her normal happy self and at least 'feeling' healthy every day.
I am starting to feel more and more positive about keeping hre home the more I discuss it.
Also - hubby and I were talking last night about the BIG possibility of moving 'up North' to a warmer, more constant climate as the weather here really causes her problems. That is fairly dramatic - but a possibility we need to give thought to over the next couple of years (unless we CURE her in the meantime).
Thanks so much for all the kind words and GREAT advice.
and especially THANKYOU for reading my rambling, long, whiney posts!
Cheers! and thanks for making me feel better.