babies and connective tissue disease

[chilly]

Hi guys!
I know I'm not the first one to talk about this. I have not been diagnosed with lupus yet, but the docs think I have it or at least one type of connective tissue disease. My problem is that I also have trigeminal neuralgia so I'm already on a lot of meds. With this meds I can't be pregnant without risking that the baby get very sick. In addition to this I have low protein S and C, so blood cloothing might be a problem with pregnancy. And I'm in a lot of pain because of my face and the other problem is that I might have lupus and I'm very sick because of this. I'm in a lot of trouble. I want a baby, not right now, but sooner or later, and I think a lot about it. I know that a lot of you have healthy babies and it's all well, but I'm scared. It's a double trouble for me right now. I'm 26 and my fianc?e is 33, so sooner or later we have to deal with it. He doesn't want to talk about it much, says it's not an issue since we can't have a baby as it is now. I'm too sick to take care of a small child the way I feel today. We have talked about adoption, but it is very expensive in Norway, so we can't afford it. I don't know how to deal with this. I'm sure he is thinking about it too, he loves children.

Any advice on how to deal with this?

Hanne,
Norway

[lostangel]

Hiya hannexxx

I know you are aware of my situation with the daughetr i lost so i wont go over it again. When i conceive again i will be on daily heperin injections to prevent clotting in the placenta. Im not sure how this will benefit you or if it will flare up any exhisting medical problems that you may have. Perhaps you could make an appointment with a specialist to discuss your options. Thankyou for the message you sent me, i did try to reply but for some reason it all went wrong style_emoticons/<#EMO_DIR#>/rolleyes.gif Didnt want you to think i was being ignorant not answering you. Im very new to this site so hopefully i will get my head round it soon.

Good luck with whatever you decide to do, and please do let me know how you get on.

All my love alixxx

[hoperachel]

the best advice i can give you is to talk to your partner and your doctor .

so every1 can have there if you know what i mean because your doctor may be able to tell you roughly how

long it will take for things to settle it every situation is different its important thoughts and feelings are

shared went it comes to a thing like this. i would say i know its hard and you want to follow your heart and

have children but its important to follow what doctors tell you too. best of luck with what you decide to do

take care from hope

[chilly]

Thank you both for your answers. I will talk to my doctors when they give me a diagnosis. I have talked to my neurologists about the TN meds, and with them I can't get pregnant without great risk to the baby. I can't stop taking the meds, because then I'm in so much pain that I can't eat or talk. The meds I'm taking for TN are meds they give for epilepsy. I might be able to do it if i cut down on them a lot, but I have tried that and the pain gets too bad. And with this new stuff in addition to this it just makes it harder.

Talking to my partner has turned out not to be very easy either. I know he wants kids, but all he says is that we know it's not possible now so why think about it at all. But I'm sure he does even though he doesn't say anything. I wish adoption wasn't so hard, but it's not only expensive, it's hard to get approved for it as well when you have a chronic illness.

It's tough.

Hanne

[pnutts]

Hanne,

I have had two healthy babies since being dx with lupus. One being only 10 weeks old. I would also suggest finding a good OBGYN that has dealt with your problems. They can also give you guidance on what to do.
I was on coumadin a drug that also is not aloud to be taken during pg. I had to switch over to Lovenox injections but I still continued all my other meds.
I wasn't even aloud to think of getting pg until all my doctors apporoved and said I was doing good. Then it took me over 2 years to get pg with our first daughter.

Your still young. Don't give up hope just yet. I'm 35 and just had my second daughter. This last time I was adviced not to get pg again by all my doctors, I'm having kidney issues now which is kind of hard to swallow I really wanted one more, but I do have two healthy beautiful girls that I need to stay healthy for.

Cath

[chilly]

Hi Cath!
When I just was admitted to the rheumy-part of the hospital I was to a lot of exams on different parts of the hospital. I was also checked out because my periods don't come regularly like they used to. Some times it's only a week between and then there might be a couple of months. Before I got sick you could set the date to when I would get it. The doc that checked me (gynocologist- is that what it's called?) said that this was the bodys way of telling me that I wasn't ready to have a baby. That I was too sick. It was some old thing that made our bodies behave this way. About my meds,I can't change to anything that isn't dangerous when it comes to my TN. All the TN meds are. And I have tried them all and only a few has had any effect, I can't be without them.

Your advice is great, and I know I'm young. I'm not planning on having a baby now anyway, but I still think about it a lot. Specially when I'm with my family and see my siblings and their children. That's hard. But thank God for them, they also help. That might have sounded strange, but I'm a bit divided.

Hanne,
Norway

[shew]

Hanne,

I feel your pain. I have a nine month old daughter and thought I would never be able to have a baby, both b/c of lupus and irregular periods (endometriosis). I ended up going through fertility treatments.

Anyway, I want to encourage you to do your OWN research about your medications and pregnancy. A lot of doctors out there are NOT informed about pregnancy, breastfeeding and medications. Most doctors (and pharmaceutical companies) will give you the standard statement of "this med is not safe" just to cover their behinds. In fact, if you look at a bottle of tylenol or advil, both say they are not safe during pregnancy or breastfeeding, when in fact, both are! There is an awesome reference book by a doctor who does extensive research into medications during pregnancy and even more so, mother's milk. This would be a good place to start. The book is by Thomas Hale called "Medications and Mother's Milk." It has been a life-saver for me, and is the reference guide my doctors have lived by. Please don't be discouraged, and at the same time, don't take one doctor's opinion as the end all, be all answer. He very well could be wrong! Research yourself! You may find that you can take the medication you are concerned about, or there could be a great alternative.

Dr. Hale also has a website where you can research medications. It is not as thorough as his book, but is a great quick-reference guide. Here's the link:

http://66.230.33.248/cgi-bin/discus/discus.cgi?pg=topics

Best wishes to you and your search for information and having a baby in the future!