Hi I have had rsd for over 4 years now and in the last month or so we just found out that we are pregnant . I have been seeing and obgyn for over a year. so hes ok he doesnt believe in ultra sounds because it can cause miscarriages and he also sent me to so high risk dr today that hasnt heard of rsd until today well the high risk dr doesnt think that my rsd is high risk and sent me on my way he was a little worried about my history of seizures but not alot to have me come back . so here i m feeling that i am not getting the right care. can anyone tell me what kind of doctors should i be seeing besides my neuro , obgyn and family dr thank you

I guess for me the main concern would be if you are on any pain meds, and if those would cause any problems for the baby.

I think we had someone else who was pregnant with RSD , that post might have been made a yr ago or so... you can use the forum search for pregnancy and probably find it.

Or maybe one of the others here will remember her name.

Welcome to the group. First congradulations on the little one. I am happy for you. I love babies and kids. God's gift to the whole world.

There are several on here that have just had babies. One has her picture on here of her and the baby and she comes on often so she will get back to you.

I would try and find a good PM Dr. although they are far and few between in my opinion BUT with your pregnancy they will know what meds you really should and shouldn't be on if you are on any.

I believe you will do fine, I think the only thing that might be hard is your pain and hopefully it not putting too much stress on you. Stress is hard on you and the baby but hopefully that won't happen either.

I would think the seizures would be the most important thing for you to be concerned about. I am not minimizing the RSD but if you have seizures you have to worry about how you react when you are having them and also how your meds for them are helping keep them under control while you are pregnant.

These are just my thoughts but I am glad you came here, I know more with come on with some help for you.

Ada

My name is Heather and I was where you are exactly a year ago...I am here if you have any questions...I am sure you will have a ton...

I have full-body, systemic RSD, and I am 27 years old.

First of all,ConGratulaTions!!!!

Second of All, you will most likely go into remission due to your auto-immune response system...Most people think it's the hormones but it's not. I had remission from 6 weeks - 32 weeks...But, the RSD will return with a VENGEANCE...Everyone is different, but mine came back full-force at about 1 month post-partum.

As far as meds went, I was taking:

Duragesic Patches 75mg - 1 every 48 hours, Morphine Sulfate IN 30mg - 1 every 6 hours, Topomax 100mg - 1 @ bedtime, Valium 10mg - 1 every 6 hours, Klonopin 1mg - 2 @ bedtime.

I found an ob/gyn that I really liked and who was willing to work one-on-one with my PM doc. You really don't need a High Risk doc because you most likely won't have as much, if not any, pain. But, you want ALL of your doctors working together for your best interest in case meds were needed or there were to be a concern. If you saw the High risk already and he saw no reason to keep you, that is okay. Just make sure that you can keep your current Dr's communicating.

I felt it neccessary to stay on the Fentanyl Patch because I still had pain in my legs. My ob ok'd this and my PM did too, but warned me about drug addicted babies. But, I went off of all of the other meds. My daughter came 3 weeks early, but was very healthy and beautiful.

I really hope this helps! I am here to answer all of your questions. I know how scary it is to have RSD and to be bringing another one into this world!!


Heather

Hello Flower.

I'm ever so sorry that I can't help with your question, but I still wanted to welcome you to NeuroTalk just the same.

Congratulations on the new little baby to be, and I wish you nothing but the best.

Hugs to you from me Flower. I certainly hope to get to know you a little better once you feel more comfortable here.

Hi Flower

I'm one of the members the others are talking about

I've had two pregnancies since my rsd started, and two pre-rsd. With my first post-rsd baby(my son Dayne)I had a remission of rsd symptoms, with my second (Hannah, my 4th child) I definitely didn't get a remission! I actually got injured while pregnant and had my rsd spread, so that was a really difficult time, but you just take it day by day and it's all worth it in the end!

It is important you have a obgyn dr that knows about rsd. If you can't get one, then that dr needs to work very closely with your pain management dr to ensure your rsd is taken into account. You have more risk of your rsd spreading due to a blood test (which you have to have during the pregnancy) than you have of miscarriage due to an ultrasound, but there are ways to limit these risks, such as having numbing cream put on the needle area 40 minutes before a blood test etc. So just research a lot of this so you can have control over your own body and the pregnancy tests etc, as if this guy doesn't know a lot about rsd and pregnancy, YOU need to know it!

some pain meds are ok while pregnant, if you go to www.safefetus.com you can do a drug search and it tells you while drugs are ok etc. But obviously work with your rsd dr, don't just rely on this website. But it is helpful as a guide. I didn't have a lot of pain meds with my first post-rsd pregnancy but with my second I did, due to the spread. but i didn't have any in the first trimester, kept them at the safe doses in the second trimester and cut them out after the 7th month as thats better for the baby.

I had the pain return within a couple of hours of giving birth, with both babies. Hannah (#4) was born via c/section as at that point my rsd affected leg couldn't be walked on or stood on so the whole "walking the halls while in labour" just couldn't happen! there were other reasons too that made this the best decision for me, too (including limiting pain levels). but when I had my son my rsd was only in my right arm and I could deliver naturally without a worry.

I bottlefed both babies from day one so that I could go back on the strong pain medications straight away. I took 4 hourly endones for the first couple of weeks, while i built up my regular meds to a dose that would help. bottlefeeding is also great for letting other people help, or if you have trouble holding bubs with rsd affected arms. but obviously if you are able to breastfeed and not go back straight away on meds that affect the baby, that is best.

There's a few of us around this board that have braved the unknown and had pregnancies since our rsd started, and we're all happy to help with any questions you have along the way.

Congratulations to you and your partner! I hope the pregnancy goes really smoothly for you!

Hi Kate,

I am not pregnant but I am interested in what you said about the numbing cream for blood tests. I go into major flare ups after blood work so I dont go often....can you tell me more

Debbie

I don't know what creams are available where you live Debbie, but here the most well known one is called Emla Cream. It's a topical (on the skin) anesthetic which is applied over the site, and then covered for about 20-30 minutes prior to puncturing the skin. This allows time for the area to deaden.

You could try phoning the people at the place where you have your blood drawn to see if they have this one or something similar. I'm sure they will have, as most use it before taking blood from small children (and big strong footballers )

What she said! lol

Yep, here is Australia it's called Emla cream. Pathology clinics don't always have it, so I get my blood tests done at the pathology place in the local hospital. Often if they don't have it available there then I go up to the children's ward and they'll put it on there for me. You still feel a little pinch but its so much better than the full pain you get without the area being numbed first.

I am a registered ultrasound technologist specializing in high risk OB and pediatrics. Ultrasound will not cause a miscarriage. Please seek out another perinatologist(high risk OB/GYN doc). Call them and ask before seeing the doctor if they are familiar with RDS. Have your OB send you to another perinatologist for a second opinion.

I would like to get preg. again but I am worried about the stress it would take on my current family, not the fetus. I have a 5 year old and 3 year old. Plus a 42 year old husband! I asked my rsd doctor if I could get preg. again and he said...why not! A pregnancy can occur and survive, even with pain killers. Pain killers cannot cross the placenta. However, if you are in pain, your body is under stress and the stress of the pain could cause more problems like high blood pressure that could lead to early delivery or other problems.

Congrats. Find a good perinatologist and get regular ultrasounds to watch the baby's growth and development.