I've just spoken to a lovely OT who is looking for information to help a patient. This is a lady who is 23 and 6 months pregnant. She has JIA (the juvenile form of RA) which has continued into adulthood, so anyone with JIA or RA may be able to help. Her condition is fairly severe, so she has a lot of problems with her hands and some mobility problems (sometimes uses a wheelchair).
What we're looking for is the sort of tips that only parents with JIA or RA might be able to give. For example, what products couldn't you do without? What are the easiest bottles to hold if you have problems with your hands. What prams are easy to set up/fold away and are lightweight and easy to move around? Any other useful tips would be appreciated.
Also, as the OT pointed out, grandparents of babies and young children might also have some good tips to share.
I really appreciate any help you can offer.
Many thanks
Victoria
(NRAS Helpline)
Written by
Victoria-NRAS
Partner
To view profiles and participate in discussions please or .
Hi I am a parent / grandparent / a qualified Nursery Nurse . Sounds like she's going to need lots of help. I don't really have any tips as such. But just a bit of info . 8 know that collages are always looking to place students especially those doing childcare courses eg. N.N.E.B.S NVQS etc. So she could find out where her local collage is and put her name forward. Then when the students need work experience they could be placed with her and she gets a free pair of hands. These students would normally be C.R.B checked to.
With regards to a buggy the lights buggy you can buy are the umberalla types , you would need to check the suitability of the age range , eg they say 6weeks or 3 maths. She would needs 6 weeks, one that lies back flat for when baby sleeps, has swivel wheels, 4 point harness. usually comes with rain cover. I bought one from a company called babylove. Last until my gran daughter was 4yrs from birth/ 6weeks. As she stayed with me every week. I hope this helps,
I was t diagnosed until after my kids but I had it and couldn't work out why it was so hard . Basic tips . Have two sets of changing stuff and clothes etc one upstairs one down. When new changes on a table so high up (not when they can roll) . I put elastic bands round the bottles to help grip chunky ones hurt more than thin . Ask for help swallow all pride .. I was on crutches until my son was three weeks old I had no choice xx
It was along time ago now (my daughters is now 22). I had to search for a pushchair and try them all.I'm not sure about the best one to buy as even the one I bought was okay when I bought it and then I had days when I couldn't operate it all. Frustrating!! One tip with vests I only ever fastened one press stud then had enough material to pull apart.
My 4 range from 26 to 13 and I was nowhere near as bad then as now. Have a couple of changing areas - the last one I changed mainly on my lap, I had a small roll up waterproof changing mat I could use if necessary to protect my lap. As to any equipment I would suggest a nearby baby superstore and try out as many different brands/models as you can as our issues are all individual and what suits one is not so good for another. It was not until I looked back I realised that I dressed them in a lot of dungaree type clothing as I found the children easier to handle and if I did have the grab them I could hold them better. One of the harder things to face is the guilt that you cannot do 'normal' active things with them but it is surprising what you can make up that keeps them running around and you sat down.
I was 34 when I had my twins and had RA for about 8 years prior to that. I found changing mat had to be on the dining table (not floor as I couldn't kneel down) with all the wipes/water/nappies to hand next to the bowl. I had to do this when they were bigger as well - fortunately they didn't roll too much!
I had to keep the girls downstairs a lot when they were tiny babies as it was far too difficult to go up & down ( and I was having a massive flare). Big cushions for propping a baby up to feed. I was unable to grip them properly because of wrist and hand pain on occasions and would lift using my arms from the elbows with hands tucked under their heads.
Car seats and buggy were hard work regardless of how light. My buggy was fab but I never had to collapse it -there is no way I coud do that as the connectors were hard to move and my fingers couldn't manage. I had a buggy with large air tyres and it was very easy to push compared to the buggies with hard small wheels. She needs to try a few to see how it feels.
Clothing - poppers! I only used to fasten a few of them depending on how well I could press. No tops with decorative fiddly openings if you are feeling tired. As they got older it is easier as my two learnt to dress themselves pretty quickly but I still have issues with buttons on school cardigans etc and zips on coats.
I'd be interested in chatting to you further as I have RA (diagnosed in December) and my twins were 2 at the end of January and I'm finding the guilt terrible...
Hi jlmack sorry just seen your note on here - well you sound like you are doing really well - the fact that you have got them both to 2 is an achievement! I always used it think that each day I got through when my daughters were fed/watered/ dressed/happy was an achievement. What is it you are especially feeling guilty for? I think when they are still small (mine are 9 now) in some ways it was easier as they didn't know any different - do you have an older child or just the twins?
How are you getting on with any medications for RA? Best wishes
This video will explain it better... baby jogger city stroller video jug
Very easy to collapse and put up, I spent a lot of time in mother are ect only to become upset and frustrated when the assistants tell you how easy it is to operate the prams! The baby jogger I researched and found online and was by far the best.
Tip, don't be embarrassed to ask a passes by to lift into boot for you, not heavy but after getting baby in car it can be exhausting.
As mentioned, no poppers although I found it tricky to find zips and Velcro fastening. With I zip you can use teeth. Also, I used table to change as well ( obviously before they can take off ). I actually found having cot right beside bed useful as an aid to pull myself up on.
I found a bumbo seat invaluable as I'd again use it on table taking baby to higher level to play and feed without having to bend over. No straps or clips needed for a bumbo.
Narrow bottles to hold. Also, although I wasn't great within 48hours of stopping breast feeding I lost all mobility with full flare and reckon there was a surge of hormones behind cause. I had to wait 8 weeks before steroid injection, wish I was prepared for that and had it sooner.
Hi I am a new mam my baby is 9 weeks now I Advise her to buy a mamas& papas stroller I find it the easy to use
I am a bottle feeder now coz I coudnt continues with prestmilk more than 2 weeks it's really hard to be in RA medication
The main problem for me when my joints in pain how to open and closing the feeding bottle I had meny accident but I kept to push my self to do it, I use tammy tippee brand
The other problem for me when I deside to gave her SMA formula milk I struggle with the led every time when I tray to opening I actually changed for Aptimul cans coz it's more easy to open.
I advice her to not use the baby carset it's really havey and will damage her joint
Longer term, get some of those tower taps for kitchen and bathroom sinks/ basins. You can operate them with one hand as they swivel for heat control. And get a support network to help too.
Was going to suggest Baby Jogger and easy to fold and I wash also going to recommend contacting Homestart. My Health Visitor referred me in December when I was first diagnosed and the lady comes once a week and makes a massive difference to my life. I've learnt not to be proud and except every help offered. My twins are 2 and although I've only been diagnosed with RA since December, I've struggled with the symptoms for a year and when they were born I was quite poorly. I cant really add to what everyone else has said, as its all brilliant. I still have have changing areas upstairs and downstairs and domt put them in buttons or outfits that are too tricky. I use car seats that spin round so I havnt got to turn awkwardly into the car. If I think of anything else, I'll add it...I hope she can look forward to the birth and the special times ahead.
Yes, I forgot to mention getting help although it wasn't home start, my health visitor arranged someone from a charity for children at risk (child protection) they did stress that my daughter was NOT at risk whatsoever but this was the only help they could get daily. Lovely lady came in each morning as my husband left for work, changed and fed baby, helped me out of bed, make me some tea and toast and made sure I had enough bottles ect made up. I do wish however this was set up sooner as I struggled for weeks before and then I only needed her for a week before I saw consultant (along with diagnosis and steroid injections) but that was such a relief just knowing she was coming in the morning!
Twins! Wow, I realise you had no option but to cope jlmack but I can't even imagine how difficult that must have been!
Oh and if she is able to, get friends, family COOK meals (if able to afford) to cook healthy and wholesome meals for the freezer. It's a twin parents mantra that we advise all our pregnant multiple parents to be to fill their freezer. I know she isn't having twins, but she will have enough to do and cope with without wanting to worry about food, so that's a pm other bit of advise. I cooked meals myself for my freezer and spent a small fortune on COOK meals for my freezer so I always ate.
Thank you all for these great replies. I am sure the OT and the lady she is helping will really appreciate these tips and thoughts.
I don't have RA myself, but as many of you on here will know, I do have a baby (11 months old) and I did find some products that made my life easier as a parent, though obviously cost may be a factor in terms of what someone wants to prioritise spending their money on.
If making up formula rather than breastfeeding:
Tommee Tippee Perfect Prep Machine (expensive, but made it easier to make up the bottles quickly)
For nappy disposal:
sangenic nappy bin
I used a travel system, but lifting the baby in the car seat might be too heavy, especially towards the end of using it, so a fitted car seat might be better. I used a Mamas and Papas sola2 pram, which I found easy to move, but quite big and it didn't fit in my boot, which would be a problem. When old enough for a stroller we use a Red Kite 'Push Me' stroller, which so far we find lightweight and fairly easy to set up and fold away.
Poppers can be a problem, as others have said, so look around, as some outfits have more poppers than others (e.g. some button to the top, while some only button around the inside of the legs.
As others have said, having some items (such as for nappy changing) upstairs and downstairs will help. You might want to do the same with Moses basket if your baby is likely to nap downstairs during the day and upstairs at night. I found a lot of expensive Moses baskets had poor reviews, particularly with regards to losing their shape over time. I managed to find a much sturdier one for only £10 at Tesco. Sadly they no longer stock it, but there are baskets that are more like £20 than £100!
Hopefully some of the tips in our 'Tips for Mums' article will also be useful:
The most important thing is when u have disability and looking after babies is having ur hot water temperature lowered. You can have adaptions made to ur hot water taps or turn the temperature down on ur boiler for hot water so as u don't mistakenly scald ur baby. U can get a brochure from able world that has safety equipment hope this helps a bit Regards janet
Try mum's net because there quite a few mum's with RA on there x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
). I actually found having cot right beside bed useful as an aid to pull myself up on.
methotrexate - how to know when you need something more
Changing jobs when you have RA
Have you been diagnosed with RA within the last 12 months?
Help understand IVIG Infusion for RA/SJROGRENS
