Still's and raising kids-Amy

[Guest guest]

Amy,

I'm not going to say it's easy taking care of an

infant or a toddler with this disease, but I think I

have the dragon fairly well tamed when I'm on the

right meds. I was worried about the same thing, but I

had to stop worrying. I've always wanted to be a

mother, and we also discussed adoption in case I

wasn't healthy enough to come off meds. For me,

stress and sleep play a huge part in how I feel. Even

before my daughter was born, I avoided working

full-time, and sometimes didn't work at all because

I've never been good a separating work and personal

life and not being stressed at home. I also have a

super helpful husband and family and friends. When my

daughter was born I had several people " on-call " in

case I couldn't physically care for my child. I truly

am blessed and know that's why I am able to care for

her.

I mostly just take it a day at a time. I don't

schedule too much when I don't think I'll be feeling

well, and it seems to work out. Granted I'm a little

grumpy with her when I'm not feeling well, but if

that's the case I take a nap when she does instead of

cleaning my house. I could definitely have a cleaner,

more organized house, but my child and health are more

important.

Hope I answered your question. And good luck in this

big and difficult decision.

Carly

--- Amy Kizer wrote:

> All ladies with kids,

>

> My Stills situation is kind of different because my

> husband also has an autoimmune disorder, Crohns

> disease. He diagnosis came 8 years before mine, and

> we had been putting off having children due to his

> health. After I was diagnosed with Stills, we

> decided it would be selfish of us to have biological

> children because we were afraid of passing on an

> autoimmune disease. We have looked into adoption,

> but are still unsure if we can physically take care

> of our children. I can not imagine a child growing

> up with 2 sick parents, I would want my kids to have

> a fairly normal life.

>

> Bottom line, how difficult is it taking care of your

> kids with your disease?

>

>

>

> Re: Kerilyn-Getting

> Pregnant

>

> --- Kerilyn Read <kcbread3yahoo (DOT) com> wrote:

>

> Kerilyn,

> I don't mind answering your questions. To make sure

> I

> answer all of them, I'm including all of your

> questions with my answers following.

>

> > How long did you have Stills before getting

> > pregnant? Almost 5 years

>

> > Did you have to stop all meds right away? My RD

> said

> I might as well stop the MTX and Remicade cold

> turkey,

> so I did.

>

> > Did you have any flares/pain while off your meds

> > trying to get pregnant? Yes. I was working

> part-time when I decided to stop taking the meds and

> within about 3-4 weeks I was having so much pain and

> swelling in my joints that I had trouble walking, or

> doing anything with my hands, wrists or shoulders.

> This lasted 3-4 weeks, and then my body slowly

> adjusted to being off the meds.

>

> > How long were you off your meds before you got

> > pregnant? We waited 12 weeks before trying to get

> pregnant, then it took us 6 more months to get

> pregnant.

>

> > Were you on prednisone and MTX before you got

> > Pregnant? I stopped taking MTX approx 9 months

> before getting pregnant and I was on 5mg Prednisone

> before and after pregnancy. I may have upped the

> dose

> on the Prednisone during the 3-4 weeks of extreme

> swelling, and then tapered down, I can't remember.

>

> > Were you also on Remicade? Also until 9 months

> before I got pregnant.

>

> > Did you take Remicade or Kineret while pregnant?

> no

>

> > Did you take any medication while pregnant? Just

> the

> Prednisone My doctor didn't want me to try to go off

> of it once I was pregnant, even though I felt pretty

> good. Probably in case my body went into

> withdrawals.

> That wouldn't be good for the baby, I'm guessing.

>

> > Did you even need any meds? Or what about pain

> meds?

> > My doctor prescribed tylenol with Codeine, which

> he

> said was safe if pregnant. I took it once before I

> got pregnant and I got so sick I never took it

> again.

> I tend to only take pain meds if I'm in extreme

> pain.

> I think that I did use night-time tylenol on

> occasion

> to help me sleep. However, I really felt pretty good

> joint wise once I was pregnant.

>

> > Did you pretty much go into remission while

> > pregnant? My inflamation levels were still not

> normal, but that can be due to the pregnancy, but as

> for how I felt, I felt a lot better than before I

> was

> pregnant.

>

> > If so how long after you were pregnant? I didn't

> know I was pregnant until about 8 weeks (long story)

> but I think it was pretty quickly. I was able to

> start working part-time again about 6 weeks before I

> got pregnant. But then I started feeling quite a bit

> better in my joints, but had nausea, of course.

>

> > Did you have a good Pregnancy? Any problems?

> Stills

> > related? I saw a high-risk OB just in case and

> they

> watched the baby really closely. They said that

> taking Prednsone while pregnant can cause

> Inter-unterine growth retardation (which I never

> fully

> understood) My baby was really small, but she was

> always very healthy. She was born 5'11 " , and they

> did

> induce labor because they were worried about her not

> growing as much as she should. But I'm a pretty

> small

> person and so is my husband, so I think they

> over-reacted.

>

> > Did you have any problems while delivering? I

> think

> it was more due to the induction and my size than

> anything else (and the completely ingnorant

> hospital).

> My mom had all C-sections because she was too small

> and I told them that may be an issue for me. I was

> in

> labor for 48 hours before they finally used a vacuum

> to get her out. I think they frequently forgot about

> me while I was there. They were in no hurry. I kept

> reminding them of my condition and that no sleep and

> stress can have very bad effects on my health/body,

> but I don't think they cared. I had to remind them

> every morning that I needed to take my Prednisone or

> my body would go into withdrawals. If you see a

> high-risk OB, I highly recommend an office where you

> see one of just a few doctors who all know your

> situation. I literally saw a different resident

> EVERY

> appointment. It was not a good situation. I knew it

> from the first appointment that I didn't want to go

> to

> this office, but it was the only high-risk office my

> insurance covered. Make sure you like your doctor!

>

> > What about after you had your baby? see below

>

> > How long after you baby was born did symptoms come

> > back? I wasn't able to nurse very long and had to

> supplement with formula from her birth anyway, but

> symptoms probably can back with 4-6 weeks. My

> recovery may have been the worst part. I don't know

> if it was because of the long-term Prednisone use,

> but

> my insides (without getting too graphic) did't heal

> very quickly. Around 6 weeks when I was supposed to

> be feeling quite a bit better I went to the OB

> hardly

> able to stand for more than a few minutes without

> extreme pressure. I was super raw on the inside and

> still bleeding from the delivery. Then at my

> follow-up at 9 weeks nothing had changed and they

> finally noticed that I had a bunch of " tags " on the

> inside that weren't healing and they had to

> cauderize

> them. It was extremely painful for about a day, but

> finally started to heal after that.

>

> > Did it come back worse? I wouldn't say worse, but

> I

>

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[Guest guest]

Hi Amy!

My son was 2 years old when I was diagnosed. Oh, before I begin,

I'll let you know I'm rather tired so I will be keeping this as short

as possible.

Anyway, like Carly, I had family and friends around that wanted to

help. My husband wasn't the most patient person, at the time so

leaning on him was out of the question. We did, however, work out a

schedule that one of us would be home with Rubin at all times so we

worked around one another. Mind you, my dragon doesn't seem to have

the teeth that others have described on here. Although lately, he's

definately gnawing at me.

Rubin is now a healthy 15 year old, none the worse for wear and

appreciates all the efforts I put forward. My house is definately

not the neatest, but he's healthy, has clean clothes to wear and

clean dishes to eat off of. When he was small, I slept when he

slept, on bad days I'd tell him, " Mommy needs a time out " and he knew

that meant I had to relax a bit.

So much for short, sorry about that. One more thing though. When he

was a baby I'd clean like a fiend. I called my mother one day crying

because I couldn't keep up the pace anymore (I was starting to show

symptoms but didn't know it) and Mom said, " Do you know what they'll

put on your tombstone? Oh, she was so clean! " I hung up the phone

and had to laugh, she was right. There after, I'd pick up stuff as I

walked by, cleaned what I could and had the " boys " help every weekend

as a project.

I hope this helped. Take care and be well.

Ellen