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Ellie

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Ellie,

In the beginning,especially before the MTX was working, would get all over

body pain.You couldnt pick him up,you couldnt rub his arms or legs to comfort

him.He would scream bloody murder until he had problems breathing.The rheumy

said it was myalgas,put him in a hot bath.I know Riley sang her joint pain to

you,but put her in the tub.There are times when we have the cleanest kids in

town. has been known to take 4-6 hot baths a day.There were times when he

went from screaming,to playing in the hot water,like nothing had been

wrong.Sorry to have gottewn you second guessing your rheumy about him saying the

MTX was working at your last visit.They see our kids once a month,and your right

,they push and prod squishy joints all day.Personally I believe mom and dad are

the only ones that can tell when it starts to work.You see improvements on a day

to day bases,not one better day for the 30 minuites the rheumy is looking at

them.I hate it when has been having alot of pain and just above a systemic

flair and he will see the head male rheumy,and be walking just fine,so the

rheumy says everything is fine,drop his pred some more,even though a couple

hours prior to the visit was creaping on his belly unable to stand.His

attitude of no rash,no fever drop his pred backfired.2 weeks later and no life

outside,here comes the fever and rash.He appoligized to me and said he was

sorry,we have only had to see him once since then.We have gotten to see the

female who is great.Shes the one that added the Plaquenil and set up the

appointment with the ortho.Thats what I was talking about getting things

done,shes the one that told me had to have his eyes examined every 6

months instead of yearly.Head rheumy never told me anything.I am by no means

comparing your rheumy to ours.It sounds like your rheumy is getting things

done,alreadt uped the MTX in the first month,getting Riley a brace.Keep up with

your journal and take it with you,that way you can show him that Rileys not

getting better,shes getting worse,and dont be afraid to ask him why he thinks

the MTX is working.Hope Riley has a better day.

Becki and 4systemic

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