Other mums with toddlers + RA

Amanda84

Hi Everyone,

I'm currently going through the diagnosis process of RA after being misdiagnosed + mistreated for a genetic blood disorder while pregnant. Two years on and one very energetic little boy later they have decided that I most probably have RA. I'm currently on MTX but GP feels its not working as have worst flare up ever these past three weeks with even more joints affected.

I'm really struggling to lead a normal life for my son and I wondered if there are any other mums here that are \ have gone through the same thing and have any advice / support as to how to make life as normal for the children as possible? My little one is getting so frustrated that he can't cuddle or play with mummy and that he is now being looked after by his as mummy can't pick him up or even get up the stairs.

I feel that no one seems to quite understand what is like.

Thanks

stickywicket

This is a horrible situation for you, Amanda. I did the two-small-boys-plus-RA thing long ago and I know it's tough.

You say you are 'going through the diagnosis process' for RA. You are on meth so presumably have a rheumatologist and, hopefully, a rheumatology helpline you can ring. Based on what you've written, I'd be ringing them and asking for advice. They may offer a steroid jab to help you out for a while or may feel the meds need upping, adding to or changing. Your GP can't do this. It has to be rheumatology.

Toddlers are difficult in that they have tons of energy, are becoming very strong but have no real understanding of adults being weak. Cuddles are essential for both of you even if they have to be clinically arranged rather than spontaneous ie sit down together, maybe at story time, emphasise the need for 'gentle cuddles', keep reminding him when necessary.

Are you unable to do stairs at all? Or do you just have to limit your trips upstairs? If it's appropriate for you, one step at a time is easier - good leg first going up and bad leg first going down. I also used to find it easier to come down backwards.

We do have Mums with young children on here but weekends tend to be a bit quiet. I hope some will be along soon. Meanwhile, if you've any specific questions, just fire ahead. We'll do what we can.

LignumVitae

Hi Amanda

Welcome to the forum. It sounds like you are having a really tough time at the mo. I can't directly help you as I don't have a child but I just wanted to welcome you and say that there are other mothers on here who have discussed this issue. I am sure somebody will be along soon with lots of advice and ideas as to how you can deal with this. It might be worth checking the publications and resources section at the top of the page. Alternatively if you search for a thread on coping with children and arthritis I am sure you will find something.
I read an interesting thread a couple of months back which had ideas in it- the one I can remember was having a treasure trove of toys which are only made available when you are struggling so that they distract your child from the frustrations you describe. Seemed like a good idea to me.
You will find lots of helpful people on here who have or are experiencing your situation and we will offer you all the support we can.
Love n hugs LV xx

LignumVitae

I've just bumped another post up Amanda xx

Amanda84

Hi thanks for the messages of support from you both. I am under a rheumatologist but I feel that he is not comfortable with making a definite diagnosis considering that the hospital got it horribly wrong in the first place.

I had a systemic shot of steroids last tues but they've not really taken effect this time. I seem to be falling into a pattern of having a steriod shot every 5 to 6 weeks as it wears off and I'm then back to square one. I've been on MTX for 20 weeks now and have already had to have my dose decreased as the Rheumy felt that it was too strong when I was presenting with some strange side effects. Is this normal when you first start treatment? I also feel like my Rheumy doesn't understand how much it is affecting my life.

Thanks again :-) xx

stickywicket

I'd guess that the lack of a definite diagnosis is less to do with what happened previously and more to do with auto-immune versions of arthritis often being very difficult to pinpoint though the treatments are broadly the same.

I'm sorry about the steroid jabs. I've always understood - though I could be completely wrong - that the more one has, the less effective they are.

As for the meth - I don't know what the 'strange side effects' were so it's hard to say if it's normal. What does are/were you on? Has your rheumatologist suggested taking anything else with it eg hydroxychloroquine or sulphasalazine? Unfortunately, only you can explain how badly it's affecting you. Maybe you should tell your helpline and ask if they could make you another appointment. Alas, with so many of these meds it's just a matter of trial and error until the right one, or the right combination is found. I hope you find yours quickly.

Amanda84

I've tried hydrooxychloriqine but had adverse reaction to it and ended up in the local hospital's AAU for almost a week. I'm currently on 10mg of meth which was lowered from 12.5mg. I started getting a really sore mouth and couldn't eat so after speaking to the Rheumy via his secretary he told me to miss a week and then carry on the following week at 10mg.

I have an emergency appointment with the Rheumy on Monday after he had read my GP's letter which was sent last week before I found the steriod to be ineffective. Would the helpline be to the Rheumy nurse or should there be another person to call? I will have to ask him on Monday as I've never been given a helpline, I tend to call his secretary who is also helpful.

Many thanks for all your advice so far

stickywicket

Ah well, the rheumatologist is the best person for you, Amanda, so, if you have an appointment on Monday, I'd just suggest you make a note of everything you want to ask, in case you forget and, if possible, take someone with you to remember the answers.

What you get may depend on where you live but most people on DMARDS are given a rheumatology helpline number for their rheumatology nurse. You should also be having regular blood tests and should have a booklet in which these are recorded.

12.5 isn't a high dose of meth. It may be that, if your mouth has cleared up, and you're OK on 10mgs, you can increase it again. or some other med may be added to the mix. Just try to ensure that you get your message over that something has to change because you can't currently cope. I wish you well. Please let us know how you get on.

P.S. Just a thought - I presume you're taking folic acid too. That helps to prevent side effects so increasing it might be an option.

frogmorton

Amanda

Just wanted to give you my support - my kids are teenagers now, but like a lot on here they were little when things first went wrong for me.

Your child (girl/boy? about 2 years?), will grow up to be independent and strong because he/she will learn to stand on his/her own two feet sooner than most. You might feel like a not so good Mum, but you are the best Mum in the world for him/her you really are because you are their MUM!

Your child will grow up and be able to do more, dress themselves earlier and other essential life skills too. Don't feel bad if you are poorly and the DVD player helps you to get some rest, so long as your little one is loved and safe he/she will do just fine.

I know this because you are thinking about it and caring.

Now rheumy tomorrow?

Get some paper and try to write a succinct list of what is going on and what you can't do because of this illness. If poss get someone along to support you (family or good friend), and don't be ashamed to cry if you do.

Please do let us know how you get on

Love and hugs

Toni xxx

angelito

hi amanda

im feeling your pain. i was just diagnosed with ra in march and i also have not been feeling any benefits from the mtx. i also have a 3 year old boy who has autism. what works for me is getting him interested in table top activites. drawing, jigsaws, painting etc. this way i dont need to strain myself soo much. i also have a seperate playroom for him that he is allowed to wreck to his hearts content then i encourage him to tidy it which tires him out. i also involve jack in the daily chores washing dishes, emptying the machine, sorting socks, hoovering etc which also tires him out.

Amanda84

Hi just thought I would update you all on my Rheumy visit today. He has put up the MTX to 15mg although he said he could not feel any inflammation in any joints and the bloods I had done were back to normal so he was giving me the benefit of the doubt. I had made a list of all my symptoms and how much they are affecting my everyday life but I felt like he still doesn't understand how much it is affecting me. I told him that I have difficulty going up and down the stairs and he said that he can't understand why as I'm not disabled. I'm not in hardly any pain today, just my elbows which he says is probably tennis elbow, nothing to do with any of this. I've come out of the appointment feeling like a liar. Did anyone else experience this?

He has told me that he wants to me go back to him when I next have a flare up and have blood done before I see him. It seems every time I have an appointment my joints aren't inflamed and only the GP is seeing how bad they can get.

Needless to say I'm feeling really depressed and fed up with whole situation.

LignumVitae

That's another tricky little thing about arthritis, you make an appointment, you can be as bad as you've ever been, the day your appointment arrives arthritis is nowhere to be seen and you look fine, it's having a day off, smoking a **** behind the bike shed.
I'd take more from your consultant's actions than his words, he put your dose up, if he thought you were just making it up, he'd have taken you off the meds. I think they sometimes give us the old 'are you really sure?' routine because it's better than giving you a worst case scenario laiden speech.
Don't worry, nobody goes on methotrexate for fun or as a test, he believes you. Bloods and feeling joints are not definitive diagnoses.
LV

stickywicket

I'm with LV, Amanda. He's a rheumatologist. He knows RA can be an elusive little beast and that's why he's asked to see you again when you do have a flare.

I hope the increased meth does the trick for you with no side-effects. Take care.

andreaH

Hi Amanda, may be joining this conversation late, but not been on in ages. I have RA and a toddler, just turned 3; alghough i have had ra for a very long time. The thing you mentioned about the elbow, mine always bothered me and my rheumatologist dismissed it, now it wont straighten. Can't believe they said why do you have difficulty with the stairs...the cheeck. its because they have not had it themselves and they often dont know what to say. I personally have loads of trouble with the stairs.
My little boy comes down the same way i do, which is one foot at a time very slowly. He wants carrying into nursery on bad days and i find it very difficult. As he gets older things do get easier but he does not understand if my hands are sore. I think he is getting used to me saying my knees are sore or me walking very slowly in the mornings. I work 3 days a week, on my days off i seem to crash with him and be tired and very stiff, he tends to watch tv while i wait for my stiffness to improve, or not.
Hopefully you can get your meds sorted and things will be a bit easier. xx

jenzie06

Hi Amanda
I've had RA and fibromyalgia for almost 15 years and I've got a little boy who is 2.5yrs. It is difficult but it is getting easier as he gets more independent. He's a very physical little boy and loves climbing all over me which is incredibly painful. He doesn't yet understand what is wrong with mummy but has adapted to others having to step in to help. We still have cuddles, while watching a film or reading a book together. The one thing I struggle to deal with is watching his Dad and him go off to do something active and I have to stay behind or watch.

My bloods have always not shown much and I don't swell up very often and never when I have an appt in the dept. It's sods law. It's hugely frustrating and I can get quite cross with my doc as he will say it 'just' fibro. I now usually reply 'oh, well if its ONLY fibro I will stop complaining and go and get one with things, putting a name to it has made me feel so much better!' He got the message!
There are a lot of people who's RA does not exhibit classic signs. Might be worth reminding your consultant. Also if you need some more support you can always contact the helpline here (I have rung up just to have a blub in the past), or NRAS or the disabled parents network.

Hope this helps, there are others out there in similar situations so don't despair.

P.S if you are really unhappy with your consultant you can always ask for a second opinion.

tkachev

I can tell you I was diagnosed with tennis elbow about 8 years before finally diagnosed with R.A. First one went and then the other.

In my experience of R.A In the very early days my knees were painful and I could not walk up and down the stairs without pain but the joints were not noticeably damaged just swollen. Why he can't understand the difficulties you are having I just don't know.

I had a new born baby and an 18 month old when first diagnosed and went on to have another child a few years later. The first 2 were later diagnosed with autism. It was tough and I had moments of despair (especially with my youngest who used to throw all my books and paperwork on the floor when angry because she knew it was painful for me to pick it all up again). like Toni suggests watching T.V together is not such a bad thing.

Don't be afraid to ask for help from immediate family if needed maybe to take the toddlers for a walk to wear them out or as extra support in the home.

Hope to hear from you on AC in the future,

Elizabeth