Arthritis and Kids

ninakang

Hello to everyone

I thought I'd post something on this forum for a change, rather than just read and offer sympathy to everyone else :-)

I was recently diagnosed with RA and the pain seems to move around my body and is in different places every day. I also work full time (for a very understanding Fire Service) and have 3 beautiful, crazy daughters aged 5,7 and 10.

Does anybody else on here have young children and what difficulties do you encounter with them day to day and how do you cope? I know there's a lady on here with a 9 month old baby, but what about the rest?

Sometimes my knees are bad and I struggle to kneel by the bath with them and end up getting a chair. Sometimes it's my hands and I can't tie their plaits so they have pony tails instead (this upsets me more than anything). A lot of the time, it's picking up things off the floor which my girls are very helpful with, but it does get me down on my bad days.

Anyone else feel the same?

Nx

woodbon

Hi, Sorry, unfortunatly I couldn't have kids, and I don't know how ANYONE copes, even people without arthritis! . But seriously, there are lots of Mums and Dads on this site, working Mums with small children, so like buses, one will be along in a minite.
Hope all goes well with the family, Love Sue

sarahbenn

Hi there Nina, I'm pretty much in the same boat as you as I have 3 young children aged 5, 8 and 11 and also suffer with RA. It is hard nowadays to do a lot of the things I'd like to do with them and i do feel guilty when they ask if we can do certain activities that i know I'm going to suffer with for taking part in, even walking to the local playing fields which are 5 minutes away is hardwork but the way i see it is they are only young once and i want to do as much as i can with them even if i do end up in pain, i don't want to be a spoilsport mum so i just basically grin and bear it for their sake. I suffer with my hands ankles and feet the most so even sitting colouring can be difficult at times i think at the end of the day you just learn to cope with the RA as best as you can I'm sure your children are just as happy as mine are and will help you in any way they can, children are very adaptable and because they love you unconditionally will do anything for you they dont see things like we do they just like to help, I really don't like my children to see my pain and used to hide my symptoms from them but nowadays its just not possible so they've learned to deal with the RA as I have, I just hope my flare ups ease off abit now that the summer months are approaching so I can get out there and enjoy them more, sorry if this isn't much help and I hope you soon feel better
sarah

ramummy

Hi there,

I have two little ones aged 3 and a half years and 7 months and I was diagnosed with RA a couple of months after my youngest was born. The whole thing is still very new to me and sometimes I find it totally overwhelming. My maternity leave has just finished and I've gone back to work 3 days a week. I decided to tell my colleagues as I work in an small team so they would need to be understanding if I needed to take time off because of a flare up.

My eldest understands that sometimes Mummy is poorly and she'll kiss my poorly wrist better bless her. The baby is a bigger challenge - a couple of weeks after he was born I was virtually crippled and I had to enlist the help of relatives to care for him while my husband was at work.

I confess we have hired a cleaner now to take care of the house so that I can concentrate my efforts on the children.

I guess the hardest thing is getting down on the floor with my eldest, my knees aren't up to much, the back of my heels are always tight and painful and I can't use my hands to help get myself back up as my wrists are not good - as a result I always use a changing table for doing the baby's nappies! I mostly manage but it upsets me that I can't be as active when I play with them as I would like to be - hopefully soon my meds will get everything under control so that I can join in more!

I think it'd be lovely to have a forum for parenting with arthritis - there must be loads of us struggling!

Take care. x

jackie1955

Hi Young Mums!

I wonder if any of you will know the answer to this..... I recently started on MTX and the nurse who 'counselled' me about it said about avoiding anyone who has a 'live' vaccine e.g. yellow fever, for a few weeks.

Being a devoted Nanna I said 'well what about babies and children when they have their vaccinations'. First she said avoid contact with them for SIX WEEKS. As I have a grandbaby who has only just had the first vacs, I got quite upset So then she said I'd probably be ok in the same room, but not to hold the baby, or change a nappy, for 6 weeks.
We chatted a bit, and it transpired she didn't really know much about the vaccs given to babies/pre school etc such as if they are 'live'.

Well, if any of you are on MTX what advice have you been given regarding when your kiddies are vaccinated?

Jackie x

katekelly

Hi Nina,
My older 2 were 6 and 2 when I was diagnosed nearly 14 years ago. I have since had another one who is now 6. It is very hard to cope specially when they are young.
As for bathing the kids as soon as they were old enough I would let them do it themselves supervising whilst perched on the loo. My youngest is now trying to shower herself. I give her the shampoo in her hand and again supervise whilst perched on the loo. I make sure she rinses herself and her hair properly. It has given her a great sense of achievement doing this small thing for herself. The only thing she can't do is dry her hair which is a mamoth task in itself. Although it is shoulder length it is extremely thick. My eldest had hair so long she could sit on it but there came a time when I just could not look after it properly so it had to be cut off. Long hair looks beautiful and each of my girls have had gorgeous hair but it really is too much for people in our situation to cope with.
I felt very guilty when youngest was little because I couldn't take her on the back of my bike for bike rides or go swimming etc like I had with her sisters, but as the Health Visitor said to me little one won't know if she is missing out because she has never had that. So we spend more time doing other things. She is an avid reader and very inquisitive so we spend hours trying to find the answer to questions that I wouldn't think of now let alone when I was 6! We write stories for each other and I take her to a gymnastics club which I didn't think to do with her sisters.
So although it is hard being a disabled parent like everything with this disease you just have to look at the "job in hand" from a different perspective and go about it another way.
There was a study once that said that children who came from families with a disabled parent grew up more empathic and caring than those without. So look on this as a positive, your girls will gain from the experience of growing up with a disabled parent I certainly know my older two have and I hope youngest will too.

mistywillow

katekelly wrote:

Hi Nina,
My older 2 were 6 and 2 when I was diagnosed nearly 14 years ago. I have since had another one who is now 6. It is very hard to cope specially when they are young.
As for bathing the kids as soon as they were old enough I would let them do it themselves supervising whilst perched on the loo. My youngest is now trying to shower herself. I give her the shampoo in her hand and again supervise whilst perched on the loo. I make sure she rinses herself and her hair properly. It has given her a great sense of achievement doing this small thing for herself. The only thing she can't do is dry her hair which is a mamoth task in itself. Although it is shoulder length it is extremely thick. My eldest had hair so long she could sit on it but there came a time when I just could not look after it properly so it had to be cut off. Long hair looks beautiful and each of my girls have had gorgeous hair but it really is too much for people in our situation to cope with.
I felt very guilty when youngest was little because I couldn't take her on the back of my bike for bike rides or go swimming etc like I had with her sisters, but as the Health Visitor said to me little one won't know if she is missing out because she has never had that. So we spend more time doing other things. She is an avid reader and very inquisitive so we spend hours trying to find the answer to questions that I wouldn't think of now let alone when I was 6! We write stories for each other and I take her to a gymnastics club which I didn't think to do with her sisters.
So although it is hard being a disabled parent like everything with this disease you just have to look at the "job in hand" from a different perspective and go about it another way.
There was a study once that said that children who came from families with a disabled parent grew up more empathic and caring than those without. So look on this as a positive, your girls will gain from the experience of growing up with a disabled parent I certainly know my older two have and I hope youngest will too.

Hi Nina
My kids are grown up now and thankfully my RA came on when they were teenagers. I have always had major spinal problems and surgery when they were smaller. It is physically hard and as difficult as it is you have to try and accept any help from friends/ family that is on offer. The most upsetting thing i found was the guilt I felt at not being able to do so many of the activites with them that I wanted to and felt i should. However now i chat to tham as adults it didnt seem to impact on them too badly and they have grown up to be very caring and aware of other peoples problems. (not a bad thing) Both chose to do voluntary care work etc when they have spare time so I guess they couldnt have found the experience too awful.
You appear to have a wonderful sense of humour and great outlook on life and i am sure people will be only too happy to lend a hand if you ask them
Take care of yourself as well
Love Gillx

jackie1955

jackie1955 wrote:

Hi Young Mums!

I wonder if any of you will know the answer to this..... I recently started on MTX and the nurse who 'counselled' me about it said about avoiding anyone who has a 'live' vaccine e.g. yellow fever, for a few weeks.

Being a devoted Nanna I said 'well what about babies and children when they have their vaccinations'. First she said avoid contact with them for SIX WEEKS. As I have a grandbaby who has only just had the first vacs, I got quite upset So then she said I'd probably be ok in the same room, but not to hold the baby, or change a nappy, for 6 weeks.
We chatted a bit, and it transpired she didn't really know much about the vaccs given to babies/pre school etc such as if they are 'live'.

Well, if any of you are on MTX what advice have you been given regarding when your kiddies are vaccinated?

Hi Mums! Anyone any info on the above please?

Jackie x

eckstardeluxe

Hi Nina

I am 33, I have been diagnosed now with end stage OA and spinal stenosis. It was caused by an illness I had as a child but only became so severe it was noticeable after having my son who is 1 on Monday. I also have a three year old daughter.

It's very hard work. There are times I can't prevent myself from crying with pain and absolutely hate my children seeing me like this. My daughter tells everyone she wants to be a Dr when she grows up so she can fix Mummy's back and sore leg. It's very touching but it worries me that she is so aware of my condition. I manage ok, but it's with my son I have most difficulty, he is not yet walking and so has to be lifted alot. I have fallen a few times trying to do it, once with him in my arms, fortunately he was ok.

The worst thing is when I stop and think about all the things I'll never be able to do with them. I always wanted to teach my daughter gymnastics or play football with my son and know as I can't get surgery I'll never be able to do this. But, learning to accept this and try and think of what I can do with them instead has helped. I did a couple of marathons and have kept my medals for my children. I want them to know that I was able to do this having arthritis but just not knowing at the time and hope they are proud of me. I want to continue working so they can see I'm trying to be as independent as I can and again be proud of me. I hope they will be. Also I agree with the other posters about living with a disabled parent. Hearing my daughter say those things makes me realise she and my son will be very aware of people with disabilities and be very understanding towards people with them and have no prejudices.

ramummy

jackie1955 wrote:

jackie1955 wrote:

Hi Young Mums!

I wonder if any of you will know the answer to this..... I recently started on MTX and the nurse who 'counselled' me about it said about avoiding anyone who has a 'live' vaccine e.g. yellow fever, for a few weeks.

Being a devoted Nanna I said 'well what about babies and children when they have their vaccinations'. First she said avoid contact with them for SIX WEEKS. As I have a grandbaby who has only just had the first vacs, I got quite upset So then she said I'd probably be ok in the same room, but not to hold the baby, or change a nappy, for 6 weeks.
We chatted a bit, and it transpired she didn't really know much about the vaccs given to babies/pre school etc such as if they are 'live'.

Well, if any of you are on MTX what advice have you been given regarding when your kiddies are vaccinated?

Hi Mums! Anyone any info on the above please?

Jackie x

Hi Jackie,

I asked my health visitor about this as I am on MTX and my two are very young (3 year old daughter and 7 month old son) so this vaccination thing was an issue for me too. The nurse at my sugery who does the vaccinations and the health visitor looked into it for me and told me that most childhood vaccinations aren't live. The only one that is is the MMR but even then they couldn't work out whether that meant I had to avoid having the MMR or if I should avoid my children after they'd had the MMR!!? If anyone knows the answer I'd love to know too!

ramummy

Just had a thought about the vaccines thing - lets ask the careline team!

http://www.arthritiscare.org.uk/php/phpBB2/viewtopic.php?p=96412#96412

Hopefully they can help.

page35

Hi all,
i have a 13yr old and a 2yr old, my RA started after i stopped breastfeeding my youngest, if i had known i would have continued until she was 35 .
i like the rest of you feel guiltly about all the stuff i cant do. i also work part time in a playgroup which is becoming harder to do, i love working with kids and dont want to give it up, also my youngest comes with me and loves it.
i used to work with children with special needs alot of them were neglected and i can tell you all for sure these children would give anything to have someone who loved them and cared about them, even if they couldnt do hair or play footy.
so dont feel so bad about what you cant do, we love our kids and thats the most important thing to them.

jackie1955

ramummy wrote:

Just had a thought about the vaccines thing - lets ask the careline team!

http://www.arthritiscare.org.uk/php/phpBB2/viewtopic.php?p=96412#96412

Hi, Thanks for doing that!

Grandbaby had first vaccine a couple of weeks ago..... I'm afraid I did have a little cuddle with him yesterday - couldn't wait any longer!

Jackie x

suzster

hi,
i have 2 daughters, 10 yr old and a 2 yr old.
i have RA which started when my youngest was a few weeks old, (january 07) although during my pregnancy i started having problems with my hands, wrists and shoulders. this got worse after i had her and then when she was a month or so old i had my 1st flare up, gp still had no idea what was causing them, eventually in sept 07 i was diagnosed with RA.
the 10 yr old finds my RA the hardest because up until it started i had been a fairly active person, my hands are probably the worst joints effected as due to various bumps etc i now only have 2 fingers on each hand that actually work properly! it's now in most of my joints and so most days are a struggle.
she is forever telling me to stop doing things if she thinks it hurts me, she can be quite bossy with it! but she has also struggled to come to terms with my health and is now having counciling to help her and the school nurse also has helped her understand it better.
when she has school assemblies she now gets the teacher to get me a big chair as the tiny chairs we normally sit on a to low, so thats her way of helping me!

my 2 yr old has never known me any different so i guess thats good,
i have to say that looking after a baby with RA is tough, nappies are hard to deal when your hands don't work, poppers should be banned on baby clothes!!
i often got upset because i couldn't always hold sarah very well, especially when feeding her, baby bottles are another thing that are hard to hold and getting the lids of the formula, i've lost count of how much i spilt!!
there are many things you have to work round, so if anyone out there is struggling please sk, i'm sure one of us mums and dads has found a way round most problems!!

as for live vaccine, i know when sarah had her last jab i asked about this and i was told it wasn't a problem, the risk is so low. but thats just the nurses answer!

suzster

oh, i meant to ask this as it has kept me awake with worry many times, is there a chance that as us parents have arthur then our children might also get or have it?
nobody in my family has it, we've traced back a few generations and there is no sign of any arthur, so i'm never sure if it's a family thing or just 'one of those things' as my gp says!!

eckstardeluxe

suzster wrote:

oh, i meant to ask this as it has kept me awake with worry many times, is there a chance that as us parents have arthur then our children might also get or have it?
nobody in my family has it, we've traced back a few generations and there is no sign of any arthur, so i'm never sure if it's a family thing or just 'one of those things' as my gp says!!

Hi Sue, this was the first question I asked at my diagnosis, terrifed the same fate would befall my kids. They said no because my arthur is secondary meaning there is a known specific cause for it, that being my childhood illness. It reassured me greatly, I think it may depend on the type of arthritis and worth looking into.

page35

suzster wrote:

oh, i meant to ask this as it has kept me awake with worry many times, is there a chance that as us parents have arthur then our children might also get or have it?
nobody in my family has it, we've traced back a few generations and there is no sign of any arthur, so i'm never sure if it's a family thing or just 'one of those things' as my gp says!!

This is also a huge worry for me, bad enough i have it if one of my kids got it, makes my cry just thinking about it. before i was diagnosed they kept asking if anyone in family has arthur, but now they say its not genetic, so why ask about family health?
no one else in my family has it either.

ninakang

Hello all,

Thank you so much for your kind replies and information. I think what gets to me most is that my sister has cerebral palsy and is confined to a wheelchair and because we're very close, I've always been one of her carers and I kind of feel like I'm "joining" her now - if that makes sense.

I never get ill (well, I never used to) and I feel so frustrated sometimes. I'm very much a "I'll do it myself" person, always have been and I'm really bl00dy minded. I honestly do believe, deep down, that no one can do a job better than me!

I'm just glad from reading these replies that I'm not the only one in this boat. You've all given me so much to look forward to. And yes, if I can't do some things with them, I just need to find things I can do.

My girls and hubby have been great. I even sat and watched him do the ironing yesterday but he kept telling me off because I kept trying to tell him how to do it "properly". One night last week, my eldest made me tea. It was a fish finger sandwich but, do you know what? It's probably the best meal I've ever had in my life :-)

I will go now before I start to cry, but you all are very kind and I'm SO glad I found this site and all of you to talk to.

Nx

katekelly

suzster wrote:

oh, i meant to ask this as it has kept me awake with worry many times, is there a chance that as us parents have arthur then our children might also get or have it?
nobody in my family has it, we've traced back a few generations and there is no sign of any arthur, so i'm never sure if it's a family thing or just 'one of those things' as my gp says!!

Before Hubby and I decided to try for our youngest (several years after Iwas diagnosed) we went to see Rheumy about this very thing as I would not have risked passing it on knowingly. We were told that although there is a higher incidence of RA running in families it is not something that is passed on either genetically or otherwise. No one else in our biological family has the illness so I guess I was the lucky one!!!

jackie1955

ninakang wrote:

"One night last week, my eldest made me tea. It was a fish finger sandwich but, do you know what? It's probably the best meal I've ever had in my life :-) I will go now before I start to cry" Nx

Oh Nina, the fish finger sarnie! I can imagine exactly how you felt - its incredibly touching isn't it, and something you'll never forget

Regarding RA being hereditary: I too have been told it isn't, but am always asked if anyone in the family had/has it :? None of my close living relatives have it; and deceased relatives from both parents lived well into old age without having it! So it did come as a shock to me :shock:

I am very glad it doesn't appear to be hereditary

Jackie x

ninakang

I'm not sure about this hereditary business - when I first saw my rheumy, he asked if anyone else in the family had it and I said my little sister and then he said it usually runs in families. What, backwards? No one seems to have a firm scientific basis for this (please correct me if I'm wrong), it all just seems to be "yes, it does run in families". No one else in our family (mum or dad's side) have arthur but they seem to think it's normal that me and my sister both have it?

Very confusing!

mrsdalloway

Hi I was diagnosed 6 months after the birth of my eldest of 2 daughters, 13 years ago. So both of my children have grown up with the peaks and troughs of my illness. They understand that sometimes I can't do stuff like riding a bike anymore or some days even walking a lot. What I have learned over the years though is that when the pain and tiredness is bad to substitute the activity you cannot do for something you can. For instance we have slobby film days where we have face masks on and watch chick flicks. Also, thanks for posting about the kids inheriting RA I must admit we haven't talked about it because I can't bear thinking about it. However, when the kids do mention some ache or pain I flinch and give them the third degree about where it is and how long it has lasted. Thanks everyone I don't know how I lasted this many years without this site.