Pregnancy Journal

RLS/WED occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
sarahjj
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Postby sarahjj » Sat Jun 25, 2011 12:44 pm

Beth, interesting idea about resistance during bedrest. Thanks for that. Also, what does WED mean? I've not heard that term.

And, no, no one has discussed Oxycontin as opposed to Oxycodone. I was not aware that there was much of a difference between the two. I'll check into it.

Thanks for the encouragement!

Sarah
~Sarah~

Betty/WV
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Postby Betty/WV » Sat Jun 25, 2011 12:47 pm

WED is the new name chosen instead of RLS (Restless Legs Syndrome. WED is Willis-Ekbom Disease.
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

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Postby badnights » Sat Jun 25, 2011 7:29 pm

Oxycontin is the sustained-release form of oxycodone. It will release slowly thru the night and might keep the oxy level in you high enough that you don't have to wake up. I think you should ask about it.

Personally I think you doc is torturing you inhumanely but stay cheerful with her and ignore that statement...
Beth - Wishing you all restful sleep tonight
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sarahjj
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Postby sarahjj » Wed Aug 10, 2011 12:50 pm

Things are beginning to change rapidly. Its really starting to get interesting now! (That's just my sarcasm showing through).

My neurologist finally decided to switch me over to Oxycontin, supplementing with Oxycodone. I am currently taking 40mg Oxycontin during the day and 40mg at night, and 20mg Oxycodone at night. Now I am able to get about 6 hours of sleep all in one chunk, instead of 3-4 hours in pieces. I am also able to take a nap during the day, which is a blessing.

I went to my OB yesterday for my monthly checkup and my blood pressure was 158/98. Since I am at very high risk for preeclampsia, we are pretty sure this is the first sign of it. However I am doing a ton of labs today and tomorrow and go back for results next week. If this is preeclampsia, I am on bedrest for the remainder of the pregnancy.......my worst nightmare.

My OB was also telling me that he wanted to see me on the lowest dose of Oxy as possible. He admitted that he had no idea what its like to have an RLS attack, but seemed to be hinting towards asking me to "deal with it" in order to cut back. I tried to explain to him that my attacks are severe and involve constant movement that include kicking and stomping. The attacks get so violent that I can't help but wonder how harmful it is to both me and the baby. I told my doc that I honestly don't know which is worse; asking my body and baby to suffer through violent RLS attacks or risk being born addicted to OXY. Neither is desirable. Its so hard to know that either way, I am making my baby suffer. This RLS is such a curse. Its so cruel. And I have been questioning "why" over and over lately. Its just so horrible. During pregnancy, its common for your hips to hurt. Mine certainly do and the RLS attacks only make the pain outrageous.

The irony of all of this is that the medical community just doesn't seem to understand. My neurologist is doing a great job with me. But the OB's and Perinatatologists just have no clue. Oh well. I'm doing my best to educate my little corner of the world. Keep me in your thoughts and prayers as these things continue to develop. If I'm on bedrest for the next 4 months, I'm going to need to come up with a plan to deal with restlessness.

Thanks for reading and "listening". I appreciate it.

Sarah

P.S. We did find out we are having a boy!
~Sarah~

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Postby Polar Bear » Wed Aug 10, 2011 6:07 pm

Congratulations on having a boy :)

My friend had pre eclampsia and hated all the bed rest, never mind that she does not have WED. We will all think positive thoughts that your high blood pressure reading isn't the start of it.

I wonder could Dr B advise regarding the meds and pregnancy if you sent him an email?
Betty
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Postby SquirmingSusan » Thu Aug 11, 2011 1:52 am

(((((((Sarah))))))) I can't imagine having wicked RLS and being pregnant, let alone being put on bedrest! I am assuming that your doctors are on top of the whole iron/ferritin issue? My understanding is that taking opioids during pregnancy is not very risky. It makes things more complicated after delivery, though. It seems better to treat the RLS and deal with what comes with that.

I had blood pressure issues when I was pregnant, and I just hated that they would threaten me with bedrest if it got worse. Just telling me that was enough for me to worry about it enough to raise my BP! At some point I figured out that I am in the 20% of the population that has higher blood pressure in the mornings, and I quit scheduling my appointments early in the day. Somehow I made it through without bedrest. It was enough to have hyperemesis and not be able to eat.

I will send prayers and light candles for you that you don't have to go on bedrest, and that the rest of your pregnancy is happy and healthy. You will get through this.
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Postby ViewsAskew » Thu Aug 11, 2011 4:39 am

You are so brave, Sarah. I thank you for educating everyone - and ever WED/RLS mom who comes in touch with these people after you will be grateful for it, too.

I hope that you get through without the bed rest....I truly can't imagine it.
Ann - Take what you need, leave the rest

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sarahjj
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Postby sarahjj » Tue Aug 16, 2011 11:50 am

QUICK UPDATE: I think its interesting how my OB and Perinatologist have two different opinions about the narcotics. My OB doesn't want me on them, or at least as little as possible, because of the problems after birth for the baby. But my Peri has no problems with it at all. He says that its a common occurance and the hospital knows exactly what to do about it. They do it every day. I feel that I don't have a choice and so I have to do it this way. Interesting.

The Perinatologist said that a study came out a few months ago suggesting that narcotics like Oxycontin/Oxycodone could cause heart problems in the growing fetus. Well, they did an echocardiogram and growth study on the baby's heart this past Friday and his heart is PERFECT. My Peri was practically in tears when he was telling me how well my baby is doing. He said when he first met me, he had major concerns that this would not have a positive outcome. But now that I've reached 24 weeks, and the baby's heart shows no problems, he says that if the baby were to be born now, he would be able to live. The baby weighs just shy of 2lbs.

So I'm feeling really good about that. I'm also feeling better about my BP. I bought a BP monitor and take it twice a day. My BP has been fine for the past week. I go see my OB tomorrow to get test results, but I really don't think its preeclampsia. Thank you all for your thoughts and prayers! They really do work!! :D

I will continue to take things one day at a time. I am staying as inactive as I can, as the docs have advised. Thanks for all your encouragement.

Sarah
~Sarah~

sarahjj
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Postby sarahjj » Tue Aug 16, 2011 11:50 am

QUICK UPDATE: I think its interesting how my OB and Perinatologist have two different opinions about the narcotics. My OB doesn't want me on them, or at least as little as possible, because of the problems after birth for the baby. But my Peri has no problems with it at all. He says that its a common occurance and the hospital knows exactly what to do about it. They do it every day. I feel that I don't have a choice and so I have to do it this way. Interesting.

The Perinatologist said that a study came out a few months ago suggesting that narcotics like Oxycontin/Oxycodone could cause heart problems in the growing fetus. Well, they did an echocardiogram and growth study on the baby's heart this past Friday and his heart is PERFECT. My Peri was practically in tears when he was telling me how well my baby is doing. He said when he first met me, he had major concerns that this would not have a positive outcome. But now that I've reached 24 weeks, and the baby's heart shows no problems, he says that if the baby were to be born now, he would be able to live. The baby weighs just shy of 2lbs.

So I'm feeling really good about that. I'm also feeling better about my BP. I bought a BP monitor and take it twice a day. My BP has been fine for the past week. I go see my OB tomorrow to get test results, but I really don't think its preeclampsia. Thank you all for your thoughts and prayers! They really do work!! :D

I will continue to take things one day at a time. I am staying as inactive as I can, as the docs have advised. Thanks for all your encouragement.

Sarah
~Sarah~

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Postby Polar Bear » Tue Aug 16, 2011 6:04 pm

I am so happy for you........... ((hugs))
Betty
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sarahjj
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Postby sarahjj » Wed Aug 24, 2011 11:31 pm

Here I am freaking out after watching a Dr. Phil episode today that showed newborns in the NICU going through withdrawl. I realize the show was showing worse case scenarios but it scared me. There is so much info on the internet about women who "abuse" oxycontin and who are "addicted" to it. I'm not abusing it and I have no idea if i am addicted to it. But I'm wondering at what dose level does it become a real problem for the baby. Can it be any dose? I am currently taking a total of 120 mg over a 24 hour period. Am I any better off then the women who are abusing the drug or am I in the same position? It just scares the crap out of me to think what the baby will go through after he's born. I don't want him to suffer like that. Of course, I don't know what the alternative would be. Is methadone any better? The docs are not concerned but I'm guessing that's because they deal with this everyday. Its just a really scary position to be in and I so wish this wasn't something I have to deal with. RLS is so cruel.

Thanks for letting me vent.
~Sarah~

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Postby ViewsAskew » Thu Aug 25, 2011 7:34 am

I can only imagine how you feel as a mom knowing what might have to happen.

You can second guess and what if yourself to death...it won't change what happens. You can shoulda, woulda, coulda yourself to death. It won't change was has happened.

Babies routinely have awful things happen to them - surgery, illness, etc. The best part is that babies have a built in way to get over it. They scream, the literally shake, they let it out....and they let it go. (There are psychologists that believe animals and babies already know how to recover from trauma. It's us, as older children and adults, who've learned we can't scream, shake, and let it out that suffer from things. Peter Levine has done some excellent work in this area.)

He may have a rough time. He won't remember it. He'll remember, as he gets older, that his mom loves him and was so determined to have him that she did what she needed to in order to protect herself and him.
Ann - Take what you need, leave the rest



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fraujoolie
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Postby fraujoolie » Fri Aug 26, 2011 4:31 pm

Hi Sarah!

I'm sorry I haven't checked in on you lately. I've been busy, so they say, with baby Jax (and big brother Joe). Jax had to have surgery (to correct hypospadias, totally unrelated to all the RLS jazz, it runs in my husband's family) this month, so it's been particularly nutty around here, but everyone is doing well. Quick suggestion on your legs (I was also on bedrest for about 2 months) -- turn yourself around and use the headboard (if you have one) or the wall to give some resistance to the legs.

I can understand why the OB is a little more jittery than the Peri. The Peri sees this sort of stuff All.The.Time -- pregnant ladies on meds for a myriad of reasons. The OB probably doesn't come across this very often (mostly because they refer out to the Peri!). I had somewhat the same reaction, but fortunately, also an OB that had RLS (as does her elderly, ill mother), so she at least knew where I was coming from.

Anyways, please turn off Dr. Phil. You know his show would get no ratings if they had us on an episode. We are way too normal. :D

I read and worried way too much during my pregnancy about being on Methadone and having an addicted baby. And as you know, he was perfectly fine. I am currently on 15mg Methadone and still nursing. Baby is 4.5 months old and a fat 18 lb butterball. Normal development. The opposite of a floppy drug baby.

Anyways, here are some things I've learned:

- The medical, psychological and physiological makeup and lifestyle profile of addicted women (AW) are much different than you or I.

- AW, first of all, aren't honest about what they are taking. Addicts are in denial and they lie. That's the nature of the disease. And unfortunately, all the docs have to go on is their self-reporting. So an AW that swears she was only taking a "small dose" of Oxy is probably lying. Her "small dose" and your small dose are two completely different things.

- AW often have a cocktail of many drugs in them. Even if they haven't been on this/that recently, it still builds up in your system (remember how hair follicle tests work). Don't imagine for a moment that the years of self-abuse hasn't affected the body's ability to grow a healthy baby.

- AW go through pregnancy in a very different way. Because they are not honest with the docs, they don't have adequate prenatal care and monitoring. They often lack good nutrition and good self-care. In other words, they continue to abuse their bodies in large and small ways, negatively impacting the baby.

- AW are often unprepared for childbirth and raising children. Their lifestyle is unhealthy and dangerous for little ones. They don't know how to nurture anything but their addiction. They go through pregnancy unfocused on the health and well-being of their babies. They are unable to bond with their baby in-utero, which also hurts development. Furthermore, once the baby is born, they are unable to nurture and bond properly, which makes neonatal withdrawal so much worse.

...

As far as the "tests" that the docs are going to do after the baby is born, most of it involves observation. They will use something called the Finnegan Scale (Finnegan Neonatal Abstinence Score Sheet -- you can google it). It mostly looks at behaviors of your baby, and if there are symptoms (high pitched, extended crying, rapid respiration, quick to startle, poor sucking, low body temp, etc), then they will start treatment for withdrawals (usually morphine). They can also test the cord blood for presence of drugs, but I was also told that it doesn't really show any sort of concentration, just what sort of cocktail is in the mix. And if you had any sort of pain relief during L&D, that is going to show up, too, so the cord blood test doesn't really do much.

For me, this meant the lead nurses were coming in to check on the baby every 4 hours, at least. She just sort of watched him, chit-chatted with me, and took his temperature, checked reflexes, made sure I was nursing and bonding with him. They also have their little ways of talking to you, to make sure you're not a lying addict. I noticed some of their questioning was like that. I came right out and asked lots of questions, and they told me about their protocol, that if the baby scores above the threshold, he'd have to first step up to observational nursery, then up to NICU, if he wasn't doing better. They would start with a small dose of Morphine to make the baby comfortable, and then start the process of weaning him off the drugs. If they suspected drug abuse, then the social worker is called. I'm happy to say that none of these things happened, and the nurse didn't even have to start using the Finnegan scale, because he was clearly such a healthy, normal baby.

I ended up getting along really well with a lead postnatal nurse/manager at the hospital, and we've become friends. If you have any specific questions you'd like me to ask her, I'd be happy to relay the message. :)

I hope everything is going well for you, otherwise, and you're able to hold off the pre-eclampsia. Please try to breathe and relax, because you are at least far enough along that even if the pre-eclampsia sets in, your baby will be fine. You have my email, if you ever want to talk. Be well! ((((((hugs)))))))
Julie

sarahjj
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Postby sarahjj » Sat Aug 27, 2011 9:38 pm

Julie and Ann, thanks for your encouragement. That was ONE BAD DAY! But as emotional as pregnancy is, I am every bit of that and more. My 8 year old son has become so accustomed to seeing tears in my eyes, that he just hands me the tissue, pats my back and says "its ok, mom". My hubby freaked when he found out I was watching Dr. Phil! He threatened to block the channel. LOL!!! (Don't worry, he's not that controlling).

Anyway, I made some progress the other day. I emailed Dr. B again (God bless him for dealing with me without me being a patient of his) and gave him an update of what was going on. He communicated to me that he thought I was on quite a high dose of Oxycontin and that there just isn't enough information available to the medical community about Oxy. They don't know what the threshold is for the dose of Oxy that would create an addicted baby. But they DO know where that threshold is with Methodone! He said as long as I stay below 40mg of Methodone, my baby should be just fine; no withdrawls at all.....in his experience. So I called my Peri doc and talked to him about making the switch from his perspective. He shared with me that he and the hospital staff would feel more comfortable with me on Methodone simply because they would know EXACTLY what to do. Whereas with Oxy, there are too many unknowns. So then I called my neuro and asked her if we could switch to Methodone for my 3rd trimester. At first she balked. But when I explained to her what Dr. B and my Peri had said, she agreed.

I begin my 3rd trimester in 2 weeks. So she has agreed to do some research to figure out HOW to switch me from Oxy to Methodone (how to dose it and where to start, etc), with the goal of switching me over in 2 weeks. Dr. B has offered to help her with it so I gave both of them each other's phone numbers. Thankfully, they know each other from attending the same conferences over the past few years. Now I am praying that my neuro will feel comfortable using him as a resource. But I am SO HAPPY that I am going to switch to Methodone for the remainder of this time simply because it sounds so much more hopeful.

My other concern is whether I can breastfeed or not. I really REALLY want to breastfeed this baby. Zak absolutely refused to breastfeed when he was born and I didn't know what else to do but give him a bottle and formula. I was young, naive and didn't have much help. So this time, I really want to do it, but my docs have been very discouraging about it, thinking that I wouldn't be able to with the meds I take. Julie, you mentioned that you have been breastfeeing Jax even tho you take Methodone. Now I am elated to think I will be able to!! All my docs tell me I have to consult the pediatrician about it so I will do that now that I can say I will be taking Methodone. I pray, pray, PRAY that it will be possible. For some reason, its so important to me. And now I've started to cry again!! LOL!!! Stupid hormones!

So, with hurricane Irene barreling down on me, I am resting comfortably and not nearly as worried. God has all of this under control and all I have to do is stay out of the way! Y'all stay safe if you are in Irene's path. Thanks for letting me vent, cry, and update you on my situation. I can hardly wait until this is over and I have my little boy in my arms.

Blessings
Sarah
~Sarah~

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fraujoolie
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Postby fraujoolie » Sun Aug 28, 2011 12:27 am

Hi Sarah --

I think it is a great idea to get Dr. B on board with everything. He is very conservative with pregnant women. You are in good hands.

I think if you want to breastfeed, you will have to go on Methadone. It is the only AAP approved pain med. I had to educate my pediatrician on it, I just sort of let her know and handed her the article:
http://pediatrics.aappublications.org/c ... /1429.full

I think the truth of the matter is, my pediatrician doesn't see too many women on Methadone, so she just didn't know one way or the other. Neither did the OB.

And the topic hasn't come up since. They say that the little bit that is in your milk is helpful with any withdrawal symptoms.

I hate it when I hear about mothers being discouraged from breastfeeding. I'm not a zealot about it, but if it's what a mother wants to do, then she should be able to do it without interference. I discovered an awesome cream by "Motherlove" (you can find it on Amazon, et al). Much better than sticky lanolin, imo. Stock up on some cream (start using it 3rd tri) and hydrogel pads (pop them in the fridge for extra cooling), and you will feel great.
Julie


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