Thanks for the replies to my pleas for help with my nauseated, anxious daughter!
We have tried chinese herbs for a couiple of weeks now but I think I will stop them. i know it takes time - but her nausea has been worse during this period - maybe coincidence but I think I am best to stop them and deal with the anxiety first. Think I will see our local herbalist perhaps to address the anxiety and nausea only.
Your messages reinforced for me the fact that the nausea is real. she doesn't ever throw up (which we have tried telling her as a 'positive' but hasn't worked). And I suppose its been easy for me to say "but you never throw up..." when she is every day really feeling badly nauseated and very close to throwing up. So far I have been able to make her realise that anxiety certainly makes the nausea feel much worse - and she is willing to try her 'calming' exercises.
I don't have this condition - neither does my husband - which is also making diagnosis difficult as normally we are told these things are hereditary somewhere along the line. No one in our families has had anything like this. Very annoying, but the positive is at least we are healthy enough to look after her! (as much as I would take her pain any day!) I suppose this makes it difficult for me to really understand what she is going through - but I am trying!
Her school has been really good - but I just do not know what to do to keep her at school. Her teacher has suggested maybe I could stay for a while - I have 5yo and 2 yo boys as well - so that is difficult, however I am thinking maybe I could drop in and visit at certain times of the day. when she knows we are coming to get her in the past - the nausea and panic has subsided. My only concern with this is that she needs to learn to cope without me and I don't want her to be made more dependent than she already is ( for her sake of course).
She has been in and out of hospital - and I think this is really common after so much attention from doctors, nurses and everyone around her - but now its been so long the novelty has worn off for everyone and I suppose we all started to expect things to be relatively normal before it was time.
Things have been chugging along consistenly with no flare ups - for a while now and I suppose I forgot(!) what she has been through and the social and psychological impact it will still have. She has been tested for cancers (of which she was aware), not to mention the countless bloods, drips, swabs, xrays, bone scans MRI, theatre.....all of it bloody scarey for an adult let alone a 7 year old!
So yes - it is completely normal to expect her to panic when she has nausea. It bugs her of course that no one still knows what it is or what might happen and I imagine her little imagination probably runs wild at times with what may possibly go wrong next.
Sadly, sometimes I think she feels really 'safe' in hospital - and if she had to go back a little part of her would be relieved and happy about it. It sucks trying to teach a 7 year old to push through her 'sickness' and try to live normally like the other kids.
She can't keep up with other kids and she is now fed up with it. She hates paly times at school because she can't play normal games. Its an endurance thing - she can't run far or for long - and thats what kids this age do! Other kids don't understand her (not their fault) and can't be bothered making exceptions at play, so choose not to include her instead.
Its bloody tough and I do not know what to do. Sometimes I think - blow it, its too hard to put her through school when she needs to deal with this stuff. But yet, its important for her to live life and learn. She is academically doing really well and loves school work. so missing school currently is not such a big deal academically - but socially it really is tough.
For twelve months she has not had a single day of feeling good. Her good days have still included nausea, headaches and/or achiness. The naproxen appears to have stopped any recurring fever and severe pain episodes but its as though it still all underlying there somewhere... kind of like its "kept a lid on it" - certainly not fixed it as she is still sick every day - but improved the unbearable pain thank god!
Briefly - her scans etc have showed 'inflammation' areas of the bone - that appear to come and go for no apparant reason, and move spots - so far 7 in all. This is the main part that makes no sense - but it is happening and the tests prove it.
Sorry I have offloaded. I suppose maybe I am hoping someone will have advice about her problems with school. I really am at a loss and have kept her home the last two days because its easier - this is probably really wrong. I am trying to build up her confidence at home and have her 'ready' to deal with anxiety and nausea before she goes back - but I know taht realistically the longer she stays away from school , the harder it will all become.
Help?! and thanks to all you caring souls who bothered to read my rambling post.
What meds is your daughter on, including the herbals, daily vitamins, etc. What did she start to take, eat, about the time the nausea started? Has she taken any traditional meds for the nausea? I can't imagine being nauseated everyday. The energy that it takes just to get through the day with nausea is tremendous. Is her nausea for 24 hours, just during the day, does it go into the nightime? Does she wake up nauseated? I have a ton of questions and I'm sorry, it will be helpful when we all start to post that we know the answers to those questions. I'm a nurse and many others on this forum are nurses and that means that we're unusually inquisitive. Lindy Perhaps her physicians might try a short course of an anti-emetic - compazine, promethazine, meclizine, scopolamine ("seasickness patch"), zofran?She is on Naproxen and Zantac morning and night. The chinese herbs consist of 22 tablets a day - which we had to crush as shes too nauseated to swallow them. I skipped a dose of herbs this morning and she just has the biggest appetite right now - a sign perhaps that they weren't agreeing with her?
The nausea has been persistent for over 12 months. At her worst she'd have severe bone pain, spiked temp and nausea so severe she'd be on the floor of the toilet - not enough energy to lean over the bowl.
Now the nausea is every day - but not 24 hours. It comes sometimes in waves. Normally every morning nausea is present to some degree and trying to get her to eat in the mornings is an issue.
It is such a long long story. Doctors have been involved for 12 months. Before that she was often nauseated and "not feeling good" or "tired" and often had achey legs.
About half way through pre-school she started the nausea - and we thought it was nerves (even though she loved kindy!) and told her, very wisely "no, your not sick, this is what it feels like when you are nervous". Boy, were we wrong! I am sure she has always been a slightly anxious kid - so as things got worse we thought it was more psychological. My first child and I didnt know these things could happen to kids - especially mine!
At this time, at functions or things out of her comfort zone she would appear to have 'panic attacks' with a severe attack of sudden nausea - that would take at least an hour to subside. Not often but maybe four times - was significant though. who knows - these moments may still have been little cases of severe anxiety?! or maybe not - the fun of being undiagnosed.
At the start of school the nausea in the morning was very severe. I thought it was nerves for school - even though she went to kinder with most of the kids. At this time she had a bucket near her bed every night - no throwing up - no obvious fever, but achey legs .
She had achey legs ever since she could tell us so.
No docs have prescribed meds for the nausea as she has been on so many different meds trying to get it right. so far the naproxen has worked best - but not perfectly. All the meds can cause nausea. As far as the medical intervention goes in the last 12 months - she has had some nausea every day - most mornings, sometimes at night and certainly with every fever.
Meds include strong antibiotics (suspected bone infection at beginning!!!-wrong!!), regular nurofen, painstop, indomethacin, codeine, prednisilone, which works immediately - but not ideal. I think that is about it. But she has been on constant meds now for 12 months.
It has been horrific but I must say it has all improved - but still not good enough when a 7yo feels sick every day.
She can have bursts of energy and some really good days - but always some period of nausea where she has to rest. Over activity brings on illness, aches, pains sometimes fever.
She 'fizzles' if she does too much activity - not as severely as before - but still will feel unwell, nausea, achey and will need to rest.
Thanks for asking questions. It is such a long story and I just figure it must be so boring for you all to hear as you have your own very significant problems. I've become used to answering people "fine" or "good" when they ask how she is, because it is too long a story and most people really just do not get it.
I posted a long time ago when the medical intervention had been going on for about 3 months - and heard form some great people here! I would love to hear from them all again.
I have not posted regularly as it is our attemp to live 'normally' and have a break every now and then - but right now - this thing is not allowing us a break so posting is good!
Thanks to all for your support!
One of the things that stuck out was that your daughter's nausea seems to go away when you pick her up from school. Is she being teased by someone there? Kids can be awful cruel to anyone different than them. Having RA and not being able to do the things the others can do makes her a target, unfortunately. I can understand the nausea when she has a fever or aches and pains. I've experienced that myself. What gets me is first thing in the morning and during school. As a child I can remember some pretty brutal teasing from the kids during play time. I wonder if the sick stomach has anything to do with a bully singling her out because of her illness. I feel for your little one and for you. This has to be such a hard time.
The one piece of advice I can give is to do your best to treat her as a "normal" child. I know that this will be difficult because she's your baby and she's sick. I have a 2 yr old and when she had lead posioning I was a basketcase. My mother raised me no differently than she did my 2 brothers. I had chores designed around my disability but still had to contribute like the other 2 children. I rebelled and tried to play on her sympathy for my RA but she stuck strong. As a young child, I thought she was mean. Now,as an adult, I know she gave me the best gift ever. She taught me how to be a self-sufficient disabled person. She taught me how to look beyond the RA and its limitations. I had none even though I had and still do have quite a few. I never even considered myself disabled. As a result, other people stopped looking at me that way too. She did all of this by making me do chores.
I pray this gets better for your daughter. She has to be so afraid. She has no idea what's happening to her or what will happen to her in the future. Please let us know how she's doing.
Hugs,
Steph
Steph,
What a valuable piece of advice - thanks so much!
As a parent I have had to be so cruel to our daughter _ to be kind but I am so glad you said all that when I am at a weak moment.
She even says when she is at her worst "at least I don't have cancer" or "well there is heaps of kids worse off than me". And I felt really nasty and horrible that she thought that way with my encouragement because I suppose as parents we try to protect our kids from the reality of what nasty illnesses can happen to kids.
There is no doubt that she has anxiety making it all worse at school. Yes she has had friends turn on her - and she is currently really afraid of not having anyone to play with. I am trying to teach her that she can survive on her own some days if she has to and to have the confidence to believe in and be happy with herself - she is a very dependent little girl and needs reassurance from others. Some tips on how to build her confidence certainly would not go astray...
She has also told me that she is scared what might happen when she feels sick at school - thus her panic at times when the nausea sets in.
My biggest fear is that by forcing her through the anxiety and nausea at school by making her stay day after day - I may be torturing her through real symptoms of her 'mystery illness'. I want her to feel validated and to know I believe her symptoms because in the beginning none of us did - we spent years thinking she was sooky and painfully shy, pretending illness to get out of walking and sometimes socialising - now we know some symptoms had most likely actually been there all along.
Unfortunately we have know 'handbook' on what to expect from her illness and we have all had to pretty much believe what she says (and mostly it is fairly physically obvious as well).
When she says she is sick it is always "in her neck" (not normally stomach)- I don't know what difference this makes but for some reason I feel that will prove to be significant one day.
Also, she is not receiving as much attention from the other kids because of her illness as she was early days - shed been in and out of childrens hospitals and had the school and class praying constantly and having talks to the kids and they were all very kind - but now its been so long she is not receiving the special treatment anymore and kids are plain sick of it. I know it is important she learn to survive without this attention and I prefer she did not get attention at all simply because of her ilness as this makes her different (we were a little uncomfortable with it all)- but it was part of the journey of having people care...
I have all along made her do chores where possible - and she has learnt how to use her illness already to not clean her room!!! I have had weak moments of course but am trying to stick at treating her as normal as possible - with a little compassion here and there of course.
I can't believe your 2 yo had lead poisoning - that was one of the many things they tested our daughter for. You have been through a lot!
Thankyou so so very much - that was some of the best advice I think I have received so far - obviously I really needed it. There have been times when I have been 'tough' on her and then bawled at night feeling bad and sorry for the both of us. I needed a little 'kick' like your post to keep me strong and reassure me. I will do my best to stick at the mum thing and treat her normal as possible and hopefully (though she may hate me at times) she can appreciate me when she is older as much as you appreciate what your mum did for you.
Yours was a beautiful story. Thankyou.
I can understand all too well how going to school with the limitations can be hard for her. A suggestion. Maybe try half days for a little while. It may be that her nerves are getting the best of her. Not saying that there isn't a true issue. I know there is. RA is no fun for a kid. Especially during play time. Another suggestion. Maybe have a playgroup almost. Have a few of the kids that are in her class come over and play games with her that she can handle. It will get the kids more involved with her and vice versa. That time one on one with her can serve a few purposes. It will give you a little break from being her only playmate, allow the children from school to see your daughter CAN do things and maybe help your daughter become more involved with the other kids. This might make school a little easier for her and then she won't feel so anxious about being there all day. Just some of my experiences as a child with RA and what helped me.
I hope this all works out. Believe me, in the end, your daughter will appreciate the "tough love". Now as an adult with a daughter, there is very little I can't do by myself. On a funny note, even though as a child trash duty wasn't part of my chore list because of RA, I now take out the trash almost every week.
You're doing a good job by your daughter. Once they get her RA under control life should be easier for her and you. Keep it up! She needs the push because it's so easy to get used to having people do things for you. Problem with that is when they're not there or not around anymore, you have to do things on your own.
My prayers are with you and your daughter. Feel free to PM me if you'd like.
Hugs,
Steph
My heart goes out to you and your little girl. What a tough time you are going through.Her teachers have been great and call me regularly and are ready to talk anytime. Her class teacher has arthritis -different to hers but has a great understanding and used to notice a bout coming on before we even did!
They mentioned a "buddy" system to me a while ago - but it wasn't needed back then as she was doing so well on her own, staying really positive and loving school - but now I think I will need to ask about it again as it may be good for her - and I like the 'reverse' idea. i know she would love to feel as though she were helping someone else out!
Half days are a thought. I am not sure where that would end though - when does she start full days? However she does get worn out really easily so it may make her feel better and therefore make it easier to be confident and positive at the start of each day.
Plays at home are great too. I must start doing this, even with some different kids to whom she normally 'relies' upon as they have shown a nasty side towards her when it suits them - which is part of the joy of growing up as a girl I know but right now positive energy would be best for her!
I was thinking about getting her involved in something outside school (obviously nothing too physical), perhaps music or singing, to empower her a bit. To make her feel comfortable in another group and not relying solely on only her friends ar school.
She has wanted to do an activity after school for a long time but the reality is she just cannot possibly cope. A full school week is too much as it is. Maybe half days would enable a bit more time and perhaps energy on her behalf to undertake one of these other fun activities to make life not so monotonous as the days really do drag on for her as she is unwell so often.
i know I ramble on and on - I always have - even in school assignments! So I am sorry about the LONG posts but right now this is really important to me. This site is like therapy for me too!
This has been so helpful I cannot explain to you. I was so stuck and felt like there was no answer to her problems. So thankyou so much for your tried and tested advice. I didn't know who to ask but I sure am glad I came here as the advice has been invaluable. I will speak to her teachers this week and present them with some ideas I have learnt from you.
Thankyou thankyou thankyou. Now I will sleep well tonight feeling like I have an actual plan!
God bless you wonderful people!
I am so sorry to hear of your daughter's illness and struggles. This must be very hard on you. There is nothing more difficult than having a sick child and it can take its toll on you.
I hope that you are able to get some "self care" in there somehow, as it is vitally important that you take care of yourself, so that you can be the best parent you can be to your children. I don't know what that entails for you....for me, it means learning to say "no" to volunteering at school, church, etc. I don't take on any extra responsibilitie. I also try to schedule a massage every week or two. For some, it is getting away from the husband and kids and going out with a girlfriend once a week, or shopping (ALONE)....whatever works for YOU. I just know that it is important for you to find time to take care of yourself.
Nausea is a horrible thing. I agree with the idea to get some sort of anti-emetic. When you're nauseous, it is difficult to concentrate on anything but the nauseousness. I recently went through a very rough time with severe nausea and horrible vomiting episodes. As terrible as the vomiting was, there was a relief period that occurred right after I'd gotten sick. That short reprieve from feeling the need to throw up was wonderful. I can't imagine how your daughter must feel with being constantly on the verge of throwing up, but not vomiting. Hopefully an anti-emetic will help. (My diagnosis turned out to be gastroparesis by the way).
I agree with you about getting your daughter involved in something outside of school, with other kids. A great program here is special olympics. The kids do not need to be disabled to participate. The activities are endless. A good, non-taxing sort of activity with that might be bowling. I also think singing, an instrument, art, etc are great activities for kids. Are you involved in a local church? Ours has a children's choir which is a great way to have an instant group of friends.
As for school. Do you have the assistance of a school social worker? I used to work as one, and I frequently worked with kids with anxiety disorders. I was based at the school, which some are, some aren't. I had a certain time of day that my anxious kids would come to check in with me. It was always a very positive things, they'd get a hug and maybe a snack (a healthy carb every few hours might help with your daughter's nausea). For one of my severely anxious kids, I set up a plan to call home. He started off calling mom twice a day to check in. We reduced it to once a day, then every other day, then once a week, then no calls. He has severe separation anxiety, so it was a slow process for him, but he did great. We also used the book "The Kissing Hand". Some kids get worse after talking to parents, it depends on the kid.
A counselor might be great to help with coping skills and anxiety. Your daughter is no doubt anxious due to her situation, which is a normal response. A good counselor can help her with coping skills and ways to deal with stress and anxiety that often results with having a chronic, unexplained illness.
Do you have a Mayo clinic nearby? It might help to get an evaluation from their doctors, if the opportunity is available.
I will keep you, your daughter and your family in my prayers. Keep posting and let us know what we can do for you.
Love and hugs, Juliah
Good Morning, What a battle your daughter has been through. It breaks my heart that a child has to go through so much.
Think about stopping all the herbals, have her doctor prescribe an anti-emetic. Besides knocking out the nausea they may have a calming effect on her. Keep a diary of her symptoms, date, time, severity once she's started on this new regimen. See how this works and just go from there.
I think that music lessons or art lessons after school are a great idea. Both are healing and fun. It has to be fun for a 7 year old.
She's spent so much time ill and trying to become healthy that maybe fun and joy of play and life haven't been a priority.
Please keep us posted, Lindy
I'm glad you are posting again. , sorry your daughter is still soooo sick. I'll post more later as I'm very tired right now. Good to hear from you again (Hurts), now Lynda.I am sorry to hear about your daughter, and hope things will get better. Another program you might want to look into is a horse riding program for children with disabilities. this will get her involved with other people besides horses and who knows it may help with some coping skills and another good old program is Girl Scouts. She would be involved with other girls of various ages and she may really enjoy it. another program we did at my daughter's school is the big buddy program, where our 6, 7, & 8 grades become a buddy with someone from Kindergarten, 1, or 2 grade. It has worked out really well and gives the younger children a little boost of confidence. This maybe something the school may want to do, not only is it a good program for the younger children, the older children learn patience with younger ones. I remember going through what your daughter has been going through but mine wasn't so severe, they kept saying it was growing pains and the dr didn't seem concerned, but back then they weren't as well informed, now we know what it can mean. Please tell your daughter we are all thinking of her and here is a special pic for her. So sorry to hear your daughter is ill again. Nausea is one of the hardest things to deal with. It does take a ton of energy to go thru the day being nauesous. I know you are from Australia, but here in the States we can do what is called a 504 Plan for the kids that have chronic illnesses and need some accommodations. Is there anything like that there? Also, can you consider home schooling for her? For the social learning the kids get in school (which is missed with home school), you can sign her up for things at like a Park District (I don't know what that would be called there I will ask Pammy416 next time I talk to her tho), community colleges also offer programs for kids where they are interactive with other kids their ages also. I have a friend who home schools and she found her son a karate class that he loves and the sen-se works with him and around the arthritis.I hope she gets to feeling better soon. I just had a bout with a pred induced virus and had to get anti nausea meds for it. They really do make a difference.
Hi again, mothers with sick children are the bravest, I wondered about you and your daughter and was so hoping you'd gotten some relief from her illness. I know how it feels to have a child who is sick 'all the time', it is difficult to explain the amount of stress that puts on a person....but I understand how you feel. There are so many wonderful suggestions already posted so I'll just say, let us hear from you and know we are all thinking about you. Love, Lynda (Hurts)Wow! it is so great to hear from you all - and those of you who I used to post "in the beginning" how good to hear from you all again and to see you are still as supportive as ever!! Thanks.
I have spoken to her teacher today. We are starting half days of school and the teacher is looking into a mentor program with an older student. We will see how this goes and if it does not work I may need to seriously consider home schooling......and I can just imagine the implications of that when my 5yo starts school next year......
I remember at the beginning of our second visit to the childrens hospital with all the doctors looking at me and my sick daughter in bed and them saying "it may well be we will have no answers for you and you will go home still not knowing.." and I was so fed up and tired and said "well, thats well and good, but if you send me out of here with nothing I will need to home school her - because there is no way I can send her to school like this". Give them credit - they are trying - still - but I suppose the home schooling may still be a possibility. we will wait and see.
I will look into a music program tomorrow. she loves music and maybe now with half days of school she may be able to muster up enough energy to cope with some sort of fun music program.
I have stopped the chinese herbs. We have enough to deal with without force feeding her 22 tablets of god knows what each day .
She has gone to bed tonight feeling sicker than usual. damn it. and a couple of quick pains sprung out of nowhere - very quick - but damn it.
Not only is she sick every day - but at school and locally there is a flu of (almost) epedemic proportions getting around as well as gastro! She funny enough never seems to catch these things - but this also causes her to worry when she is nauseated as she has seen sick kids at school....and she hates to throw up (like her Mum). just harmless little viruses that we WANT NOTHING TO DO WITH right now!
I see her paediatrician next week. he was giving me a couple of weeks to try the herbs (I give him credit for supporting my moment of madness). I will be asking him for an anti-nausea med. He wants her on pred again but I am trying to hold off and wait and see what her docs at the childrens hospital come up with. The head of the unit is now on her case - so we have two great rheumys studying her like mad right now (or so they better be!!!), before they start another med. The next meds are toxic - pred being one and the others apparantly much worse! Obviously they do not want her on pred until they at least know what it is, as pred can disguise symptoms, as well as all the other side effects on a growing child.
I didn't like pred last time - even though it provides her with immediate relief (and therefore very tempting - I still have it in the fridge)- it doesn't cure all the symptoms, changes her behaviour and coming off it is horrific. Hopefully there is something better out there....
The advice about horses - definitely not as she is scared of animals!!!! A puppy might be a good start but not now - I am pregnant with our fourth (and last) child - so no puppys for now - but definitely one day., maybe soon, we'll see.
So we are doing our best to keep her life as normal and happy as possible. right now it is pretty miserable but we will stick at it and hopefully it will improve. We are trying to stay positive!
I know I am on the wrong time here so my replies are late to most of you, but thanks for looking me up and posting - I appreciate it immensely and am finding the advice terrific!
You are all so brave yourselves. Thankyou for sharing your personal experiences to help myself and my daughter - you are all so kind!
I will keep posting.
Goodnight
First, Congratulations on the pregnancy! How far along are you and do you know what you're having?
I'm sorry to hear that your daughter was so sick last night. I hope she's feeling better this morning.
Please let us know how she makes out with the half days and mentoring program. I hope that all works. Music is great. I play the piano and did as a child also. The key fingering was good exercise for my RA and playing piano was fun for me as a kid so I stuck with it.
Have a great day!
Hugs
Steph
Hi there. Just wondering how your little one is feeling today.
Steph is right about the piano being good excercise. I took lessons from ages 7-13. After hearing me play, most people would say my parents wasted alot of money on those lessons!
I went through so much of the same troubles as your daughter, and it has brought back so many memories. I went from being a very active and skinny child to a chubby one gazing out the front window as all my friends played.
My Mom did her best to treat me as normally as possible, always reading up on RA, seeking advice - just like YOU!
Your children are so fortunate to have such a loving and caring Mother. Congratulations on the pregnancy!
Wishing you the very best with everything! God bless.
She's only little once.
I'll bet the nausea will go away with love.