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Gingerbread Kat
10-19-2008, 09:05 AM
Like as with MS; a woman with Lupus tends to have her health go down a notch with each baby she births. I knew that: and I went and had 3.
Both of my daughters have Lupus.

My 28 yr old daughter, who is a P.A., came over last night with a card:
"What Do You Want to Be Called?" with options like "Grandma, Granny etc.

I cried; which was NOT the reaction she and her husband expected. For shame! I almost beged her to abort it, and I am against abortion!
Because I love her so much and couldn't bear to lose her. Or see her suffer as I do. Plus: I almost died with each birth.

They only plan to have one; and wanted a child together. They even went to genetic counseling.
He has severe allergies, asthma: immune system stuff. So the chances of her having a Lupie is 50/50. :(

I don't see how I am going to get through this. I can't even see past the pregnancy to having a grandchild to teach to ride. I am terrified. :cry:

How was it for the younger women on this board; who had babies while having Lupus?
I am hoping things have changed inthe 28 years since I had her.

~Thanks, K

deester
10-19-2008, 09:18 AM
Oh K. Big hugs hun. I feel your pain and I wish I had words for you. I have miscarried a total of 15 times and yet my heart still dreams and desires another child so much. I can understand where your daughter is coming from. The pain of not having is so very intense. As is your fear. All I can say is that what ever your beliefs are, you must have Faith. Did you know you had Lupus when you had your babies? Sounds like you did, and it didn't change your mind at all and I am sure you wouldn't trade them for the world. You are obviously very very caring person to be so afraid for her. As my mom fears for me when I say we are going to try again. Have you ever seen the Movie Steel Magnolias? There is a line in there where she tells her mom she would rather have 30 seconds of wonderful (meaning motherhood) than a lifetime of nothing special. That is how I feel and maybe your daughter to. And yes today's medicine is so much better than it was 28 years ago.

I rambled way to long and I hope I didn't offend. I will hold you all in my thoughts!

Saysusie
10-19-2008, 09:21 AM
I am not a young woman (oh my, it was hard saying that :lol: ), but I do know that things have changed immensely over the past 28 years. For most women with lupus, a successful pregnancy is possible. This is an immense change from the 1970's, when most women with lupus were counseled not to become pregnant.
Lupus pregnancy should be timed to coincide with a period of good disease control, if at all possible. General screening tests should include the antiphospholipid antibodies, and also anti-Ro and anti-La prior to and during pregnancy. A woman who is positive for these antibodies is at increased risk of congenital heart block in the baby, and monitoring of the fetal cardiac conduction system by 4-chamber fetal cardiac echo will then be instituted.
Currently, mothers are monitored on a monthly basis during pregnancy and obviously, more often if disease activity warrants it. Laboratory monitoring done monthly includes the complete blood count, creatinine, liver function tests, urinalysis, and a 24 hour urine for creatinine clearance and total protein. Some doctors will also do serologic tests during pregnancy, others do not feel that these tests are helpful during pregnancy. In normal pregnancy the C3 and C4 should rise.
All Lupus pregnancy are considered high risk, only because they are to be monitored on a monthly basis. Since you say that your daughter and her husband have been counseled, then I must assume that their obstetrician is collaborating with Lupus specialists. Nowadays, Lupus mothers-to-be receive superb clinical care for themselves and their babies. For nearly all mothers now, a happy outcome is possible, but it should not be forgotten that there are risks and, sometimes, miscarriages can occur.
There are more reasons for you to be happy for your daughter than there are for you to have such fear. Continue to research lupus pregnancies (or if you like, I can do more research for you), learn as much as you can about how lupus mothers-to-be are cared for. It is also good for you to learn the risks (because they do exist) so that you can help your daughter to take care of herself during this most wonderful time for her. My research has indicated that the risks nowadays are higher for the unborn (unfortunately) than for the mother-to-be. With the advance in treatment and medication, pregnancy with Lupus is possible and, more often than not, successful.

I wish you the very best
Peace and Blessings
Saysusie

KathyW1958
10-19-2008, 10:05 AM
Hi K,
My name is Kathy and I have had Lupus for about 45 years. I did not know it at the time that I had my two children that are now adults, but I did suspect it. Fortunately my children were ok and they did not inherrit the Lupus. I have a son and a daughter. My daughter and her husband had a baby 4 months ago. They have a beautiful little boy. I was worried to be sure. She was worried too, but thank heavens it all worked out great and her baby is very healthy with no signs of Lupus as of yet anyway. She is 23 and does not have any signs of Lupus. I hope that she never gets diagnosed with it. You have to have faith and all you can do is pray for the best. I hope with all my heart that she and her baby are ok and that the Lupus does not come out in the baby. I will keep her and your family in my prayers.

Hugs,
Kathy

Gingerbread Kat
10-19-2008, 10:14 AM
My daughter is in 'denial' about her Lupus.
I have had it since I became a teenager and to her, it's normal. But, because her symptoms are mild, she doesn't admit to it.
She is also a P.A., which in this state is equal with being an MD. Dermatology. (she also picked that profession because it's the most 'stress-free')
So she "knows it all".
But she doesn't.
I always hid my pain and fatigue and plowed on. She doesn't even tell people she has IT.

I was warned when I had my first pregnancy but I was exactly like her. (see where she got it from?) Didn't believe my doctor/didn't care/denial.

NOW ... I am in my early 50s; and my body is so worn out.
I have been lucky that my SLE was 'mild' and I've 'only' had serious life-threatening flare half a dozen times.
Mine is more like walking up the 'down-escalator: always, always so tired,
joints like to surprise me day by day as to which one will hurt this day.

Lousy non-exsistent Immune system.
When I first had symptoms; back in the dark ages when dinosauers still roamed the earth,
all the DRs could find was a low platelet count which didn't respond to steroids.
SO ~~ they removed my spleen. .nice. Almost killed me plus left me with a double-jeopardy compromised immune system:
I can catch colds from people over the internet :wink:

HEY! My girl still has her spleen!

Isn't this board great!
I just got a huge infusion of HOPE by posting this and typing it out!

I LOVE all of YOU! Thank You for this board! :turn-l: :D
I feel so much more positive and, maybe, can even overcome my guilt (at 'giving her Lupus': stupid I know)
and worries (well; what mother does NOT worry?) and share her joy! :B-fly:

Gingerbread Kat
10-19-2008, 10:34 AM
Oh...I also have Raynuds, sjordens, osteoporosis, asplenia (no spleen),
ohh...ummm....lost track of all my DXs (diagnosises)!
Then I was in an accident where my horse reared over, I stayed on, she
fell on top of me and crushed me;
so I have 2 screws in my back, which have calcified and my pelvis was
shattered so it's made up of bondo, super-glue & duct tape. Both my hips
were damaged and I need new ones but am attatched to the ones I have. 8)

I got an ear infection, some years back, which turned into sepsis (from 'asplenia')
and I went into septic shock with my B/P 90/40.
My extermities didn't get
enough oxygen and I developed gangrene and ended up losing all my
toes and 8 finger tips. (then shattered my one pinkie when my horse
wanted to go left; and I wanted to go right. ("All the King's Horses....")
So I have a lot of pain in my feet which makes it painful to walk.
The SLE makes the connective tissue in my feet swollen; good thing I have horses to ride :wink:

*just a mild case of sle*
But I have never let it define who I am.
"...some people have blue eyes, some have brown or green, some have sle..."

KathyW1958
10-19-2008, 11:01 AM
Hi K,
Holy smokes, I feel so bad for you. I can clearly see and understand why you are so scared. It is a shame that your daughter is in denial. I have a sister in serious denial too and it is very upsetting. I have to admit that for years I had a problem with denial too and therefore did not get diagnosed. Part of it was the doctors fault, because I would go to the doctor and constantly be told that I was worrying and stressing needlessly and that there was nothing wrong with me. I was made to feel like a hypochondriac big time and it was very disheartening to say the least. It nearly costed me my life when I was 36 and the Lupus started attacking my heart muscle and nearly took me out. I hope that your daughter comes out of the denial and realizes that Lupus is a very serious illness. I don't blame you for being worried. I know that I would be worried to under those cercumstances. I will keep you all in my prayers.

Hugs,
Kathy

sits_inthe_corner
10-19-2008, 11:55 AM
Hugs Kat,

My sister miscarried many times before she was diagnosed. Once she was diagnosed she had two beautiful boys with the assistance of our women's clinic.

Since the birth of her boys she has pretty much been in remission from the lupus. She is 50 yrs old now and just starting to show signs that she may be coming out of remission.

Each person is different. We have no way of knowing how things will go. I feel your pain. My heart was broken for my sister time and time again along with fear for her well being.

We are here for you. Keeping you in my thoughts.

jaideni
10-19-2008, 11:56 AM
I had been pregnant twice before my diagnosis. The first ended in miscarriage and the second I got sick lost 40 pounds and developed eclampsia. I was in the hospital for a few weeks before they decided to induce my labor. My daughter was just fine she was just very small. I was also fine my blood pressure was high for a few weeks. I beleive if your daughter goes to the doctor and she already knows her risk a good doctor will be able to deliver a healthy baby to a healthy mom. I had to got to the doctor atleast once a week because of the weight loss andI believe that those visits are what kept me and my daughter alive.