20 month old Toddler on Prednisolone & Methotrexate

alec101
alec101 Member Posts: 6
edited 2. Jun 2010, 03:11 in Living with Arthritis archive
My daughter Meg has just been diagnosed with Systemic onset Juvenile Idiopathic Arthritis.

Does anyone have any knowledge on how oral pred, methyl pred pulses and methotrexate affect your child. Any tips on hospital visits?

I have Psoriatic Arthropathy and am currently on a flare for which I am oral pred 20mg (same dose as my daughter) and methotrexate too, so I do have first hand knowledge of how this affects you, but having more knowledge to help Meg would be good.

Alec

Comments

  • jordan7j
    jordan7j Bots Posts: 346
    edited 30. Nov -0001, 00:00
    Alec, sorry I dont have any answers, just wanted to say I am so sorry your poor little Meg has to go through this, its bad enough as an adult, and for a toddler its unbelievable!!
    I hope she doesnt get any side effects, and that the meds help her. It makes me so sad to think of her going through this. Take care of her, and giv lots of cuddles from me too,
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -0001, 00:00
    Hello alex
    Sorry I dont have any answers, but if you post in the young peoples forum there are quite a few with young children, I do hope you get the answers you need.
    Love
    Barbara x
    Love
    Barbara
  • jcp123
    jcp123 Bots Posts: 16
    edited 30. Nov -0001, 00:00
    Hello Alec

    I'm afraid that I can't answer your questions but I really have to say that I'm so sorry that your beautiful girl has to suffer this awful illnes it horrendous for a grown adult to cope with, never mind a poor wee toddler! :(

    I hope she gets the proper support that she needs from the hospital and that the Mtx helps.

    ((((Hugs to Meg)))
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    Strewth. I can't cope and I'm 51. I am so sorry. Dreamdaisy
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • marion1952
    marion1952 Member Posts: 963
    edited 30. Nov -0001, 00:00
    Dear Alec

    So sorry to hear about Meg's diagnosis. I can't help with the drug query, but a friend's daughter had JIA from about age 3 which mainly affected her knee but she did 'grow out of it' and is now a fit and healthy and successful 30 year old who has just had her first baby. She sometimes gets a 'twinge' in her knee when she is particularly stressed.

    I hope some of the other forum members will be able to give you some advice. I do know that prednisolone has been around for many years, so doctors know a lot about it, and, indeed, premature babies are given steroids to help their lungs develop..

    Best wishes

    Marion
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -0001, 00:00
    Hi Alec

    I would also post this on the "young person forum" as parents often post and respond on there.

    I have no knowledge of those meds as I have OA. Have you looked on the publications and resources section of the website?

    Re hospital visits - pack loads of mini snacks and drinks, toys and activities, bubbles, magic painting books (the ones you do with water) etc a snuggly blanket etc

    If you need to prepare her for the actual appointment - how about making a picture story book about what will happen or things she might see with simple pics and words or sentences - use drawings /clip part/google images or even photos to illustrate. At home role play hospital visits very simply using toys. Does she like dressing up? Doctor/nurses outfit and a medical case?

    Speedalong
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • joanne60
    joanne60 Member Posts: 15
    edited 30. Nov -0001, 00:00
    alec101 wrote:
    My daughter Meg has just been diagnosed with Systemic onset Juvenile Idiopathic Arthritis.

    Does anyone have any knowledge on how oral pred, methyl pred pulses and methotrexate affect your child. Any tips on hospital visits?

    I have Psoriatic Arthropathy and am currently on a flare for which I am oral pred 20mg (same dose as my daughter) and methotrexate too, so I do have first hand knowledge of how this affects you, but having more knowledge to help Meg would be good.

    Alec

    Alec

    How sorry I am to hear your baby daughter's diagnosis, sorry I can't help over treatment.

    Interesting to hear your diagnosis one wonders if there is a connection but then that is probably because my arthritis turned out to be Lyme Disease and apparently that is an infection which can be passed on to a child if the parents have Lyme Disease.

    I do wish you all well.
  • bertyboy
    bertyboy Member Posts: 1,860
    edited 30. Nov -0001, 00:00
    sorry but cant offer any advise but will leave a bundle of gentle caring hugs to you both xxxxxxxxxx
    I know i am a lady ,all life is a journey xx MAY xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    Hello alec101, just checking in to see if you have any further news on Megan. I hope she is OK today. Just thought, I'll look on the other forum too. Dreamdaisy
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 30,335
    edited 30. Nov -0001, 00:00
    Hi elec

    Have you posted on the young person's - bet you have. They tend to post less often than this site as they are younger and probably out more :wink: but they will get back to you.


    Hoping she is ok and that you are too.

    Someone has probably already suggested you look on the A care's list of publications.

    I hope she and you are doing ok.

    Love

    Toni xx
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -0001, 00:00
    I am sorry that your daughter has to go through all this. It must be very distressing for you. Is there hope that she will grow out of it? All I can think of is do as much research as poss so that you have as much understanding of it to help your daughter fight & also to deal with the docs, nurses etc.

    Take care

    Janie
  • alec101
    alec101 Member Posts: 6
    edited 30. Nov -0001, 00:00
    Yes she's seeing a paediatric rheum at Alder Hey - she was there yesterday for another pulse of steroids and will be back again for steroid injections. She was quite a bit calmer on this visit and her blood tests show the inflamation is on the way down - some measures were sky high to begin with. She is tolerating the MTX but the oral steroids make her eat and drink load, and become jittery - aggressive or over fearful - I'm reacting in exactly the same way...keep you posted
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -0001, 00:00
    Poor Megan and poor you. Oral steroids are cussed little so-and-sos. They help the disease but cause a shed-load of other (unpleasant) reactions. Please remember, alec101, that we are here to listen to any moans, groans and complaints you have about the whole ghastly process. We understand the frustrations and irritations like no others! Dreamdaisy
    Have you got the despatches? No, I always walk like this. Eddie Braben

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