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July 2016 Moms
jomama1618
member
Chronic health issues and pregnancy
jomama1618
member
I know some of this is covered in the high risk post, but I also know not all chronic illnesses/issues fall in the high risk catagory. I know there are a few other epilepsy moms on here, but just wanted to check in with all others (as well) that have chronic issues. How has it affected your pregnancy? Have you had to change meds/alternative therapies since being pregnant? What about breastfeeding (if you choose) will that be affected? Any tips/tricks you've found to give some comfort? Sorry for a million questions. As someone with multiple health issues, these questions/concerns/every changing approaches are something that come up constantly (along with people constantly being overly worried and over reacting/jumping to conclusions over everything. I know they mean well). I was just interested in seeing how other ladies are holding up and your experiences so far.
(Hadn't seen anything like this posted when I searched. If there was one, and I missed it sorry, gif party it up)
I've had to stop a lot of my meds, and work on alternative therapies/dealing with some of it. Some things we are being forced to slowly face/deal with more as pregnancy progresses (maybe I was in denial about having to deal with some of it). Still no grand mals, so super excited for that! Can't say as much for the other types. Lots of the other things (narcolepsy, eds, chiari, gastroparesis, spine issues etc) are proving challenging, and having a hard time finding the right course of action for now, but they aren't winning
and I have great drs that listen and work with me. But I feel blessed, regardless of all of it, because (so far) I'm not having most the issues/things I was told would/could happen and my little man is healthy and growing!
Edit words are hard
(Hadn't seen anything like this posted when I searched. If there was one, and I missed it sorry, gif party it up)
I've had to stop a lot of my meds, and work on alternative therapies/dealing with some of it. Some things we are being forced to slowly face/deal with more as pregnancy progresses (maybe I was in denial about having to deal with some of it). Still no grand mals, so super excited for that! Can't say as much for the other types. Lots of the other things (narcolepsy, eds, chiari, gastroparesis, spine issues etc) are proving challenging, and having a hard time finding the right course of action for now, but they aren't winning
and I have great drs that listen and work with me. But I feel blessed, regardless of all of it, because (so far) I'm not having most the issues/things I was told would/could happen and my little man is healthy and growing! Edit words are hard
Re: Chronic health issues and pregnancy
I really just just try to focus my energy and attention on what I own and eat right, get lots of sleep. My husband fusses a lot but so far in a cute and endearing way. My mom is a stress case but she's doing okay keeping it to herself most of the time. My little guy is also doing well so far, so thay feels like a huge win
@joberkisser High five to no tonic clonic seizures so far! I hope things continue to go well. I know for me having an awesome doctor is making all the difference
I was diagnosed with Rheumatoid Arthritis about 6 years ago. This doesn't make me high-risk, just makes things a bit trickier as far as pain management and joint damage go.I stopped all meds with my daughter (she is now 2.5) when I found out I was pregnant. Pregnancy hormones helped, but still had swelling and flare ups. Unfortunately the RA came back full force about 5 weeks after she was born. I stuck it out as long as I could med-free because I didn't want to give up breastfeeding, but went back on them at 5 months. This pregnancy I stopped my medications a few weeks before conceiving as I started seeing a naturalist and changed up my diet in anticipation of getting pregnant...and have had pretty good luck thus far with only a couple of bad flare ups. I'm hoping to BF as long as possible this time as my doctors aren't comfortable with me taking anything while nursing, but not going to let the mommy guilt get to me this time (I could barely pick up my daughter some days - what good does that do anyone?).
Hugs to any other mamas facing chronic illnesses. You got this!
I have stopped a number of medications but have had to increase my beta-blocker due to a dramatic increase in tachychadia under close watch of my MFM and cardiologist. For pain relief, I am relying on magnesium infusions which obviously aren't nearly as effective as muscle relaxer but they are safe for baby. I will stay the course if breastfeeding and will be meeting with anesthesia later in the month to see possible delivery options.
I have epilepsy. I am still on my medication- my neurologist chose the medication I was on with the lowest risk to bub back when I started the medication. The medication I am on carries a slightly higher risk of cleft pallet, but the risk of seizures for me was too big to risk going off the medication. I did try to wean myself off one of them (I'm on 2, which isn't ideal) just before I fell pregnant last time but started having seizures again.
I am having a bit of an issue because I got a new neurologist (my old neurologist moved away so I had to get a new one) and he doesn't agree that I have epilepsy. I've never had a positive eeg, and he wants me to have another one when I am 30 weeks pregnant to see if the pregnancy is changing my brain patterns. He is trying to make me come off of my medication now, which I'm not comfortable with. I'm choosing to ignore him and follow the advice of my old neurologist. I am also contemplating refusing the eeg, just in case the strobe lights make me have a seizure. I am assuming if I do have one, they would immediately revoke my drivers licence which would completely screw me.
From my research (I forgot to ask the neuro about it) I should be able to breast feed. Bubs is already used to the medication and it would probably be worse for him to go cold turkey after having had it the whole pregnancy. I've read some scientific articles about it, and it seems the particular medication I am on doesn't affect him- some of them have shown to reduce the babies IQ's. I am just going to continue under the assumption that I am breast feeding until someone tells me otherwise.
@weville I am also concerned about labour. My triggers are hunger, pain and tiredness. DH has already said the moment I look funny in labour he is demanding I have a C-section. It's completely understandable, seeing as he would be watching me have a seizure and possibly harming Bean if I chose to continue with labour and had a seizure. That is why my birth plan is going to be take it as it comes. I am not ruling anything out. My plan is to have a labour with no pain meds but I will alter it if any of the circumstances change.
Little boy due July 31st 2016
@weville I basically just nodded and pretended I agreed with him. I just couldn't believe him when he started saying I didn't even have epilepsy. I stopped taking his opinion seriously from that moment.
It's just hard because my epilepsy is genetic, and we all have exactly the same kind so I know it is epilepsy. None of us show up on EEG's and all of us started by having weird seizures (like drop seizures and Dejavu seizures) before progressing on to grand mal's. I've never had a grand mal, but I think that's because I got put on meds earlier then the rest. They thought my mum's sister was faking it until she had a grand mal in the bath and nearly drowned.
I'm a bit worried about finding another neuro due to the medical system in Australia. I am going through the public system, which means you just get given a doctor. If I chose to go privately, I will have to pay for it. I'm also unsure what a new neuro will do. I have been diagnosed and I'm on medication that controls it. Up until this point all of my neuro appointments were them just checking I hadn't had a seizure and updating my driver's licence which I'm pretty sure my gp can do.
Little boy due July 31st 2016
I've got to tell you numbing needles seem way more terrifying then an epidural!
I get that stern talk every time we go! (Meaning I will get one tomorrow lol) And DH and my Mom are just like your DH, and have been for 6 months
And ya, those needles are terrifying me! But I am not allowed to have an epidural (between spine/disc issues and Chiari leaving my cerebellum/brain stem herniated into my spinal canal, it could be dangerous to attempt one.) So, unless the anesthesiologist comes up with a better plan, this seems to be safest (even if it's scary as hell lol) as of now.
I'm still on my meds (Remicade infusion every 8 weeks) until the early third trimester and will resume right after birth. I was also on prednisone at the beginning of the pregnancy, but I'm finally off!
To answer the Csection question, my GI doctor said they would perform it only on patient with active disease. Otherwise she told me she prefers patient who don't have CS because on the long run recovery takes longer and we are already at risk of flaring post birth because of the lovely hormones!
like PP, I've felt baby boy move around week 17 and I wondered if it was because I'm pretty aware of my bowel habits, because I don't have lot of padding or just because he's an active little man
My experience have been positive so far! I did change MFM specialist because I thought the first team was a bit agressive in their approach. Because of other health problem (blood clot history and Graves disease (hyperthyroid) they wanted to induced me early and were also talking about high probability of CS and I thought it was jumping the gun. I read a lot, and chatted with other Crohn's moms and I felt confortable with looking for another doctor that would fit more my needs. I did found one that I love and even after one appointment he was totally on the same page about no induction or schedule CS!
years and finally a few weeks ago got diagnosed with piraformis syndrome.
I in know way consider myself in the same league as many of your diagnosis but after struggling every day this pregnancy with awful pain because I can't take NSAIDs or higher pain meds I'd love a place to come get and give support as well. But I totally understand if this isn't the right place for me as well
I stopped taking my weekly biological injection (Humira) early on, but not because I was advised to. I had to move across the world to be with DH and won't be covered for any Crohn's issues for my first year here... (pre-existing condition waiting period). So I started stock piling the Humira for when I really need it later (GI says it might hit like a tonne of bricks post natal). The injections are approx $800 per week if you had to pay cash... So yeah, decided whilst I'm in remission to stock pile what the Irish government used to provide me free of charge and be as cautious as possible with diet and stress whilst growing this little baby.
So far so good, but with Inflammatory Bowel Diseases of all kinds (Crohn's and UC), you also learn to expect the unexpected. Crossing all my fingers and toes that I remain in remission at least until July 3rd, when I'm due.
Kudos to all chronic condition Mamas and all you have to sacrifice to make lovely babies!
I've struggled a bit with this but have come up with two things which make me feel slightly better about it:
1) The father's genes may hopefully reduce the risk of the baby getting my chronic condition;
2) Babies can get any number of different conditions - from mild to severe. Perhaps it's a case of 'better the devil you know', i.e. my chronic condition sucks but I know what it involves and how best to manage it and therefore the small risk of passing it on might not be as bad as her getting something more severe or something we know very little about.
Still keeps me up at night sometimes, not going to lie.
i just try to think though that this baby will be loved and while i haven't loved parts of having those two things it really helped me grow in my empathy and ability to care for others and if she gets those things that's pretty okay too
forums to visit. You can probably get there by clicking back on the top left corner of your phone
@kannerush I am terrified that Bean will hit the genetic jack pot between DH and I (I have genetic epilepsy and hypermobility caused by suspected Marfan's syndrome and DH has Ankylosing Spondylitis and possible Marfan's syndrome). Typing that makes it seem even worse then it was in my head. Euugghh. I'm just going to watch him closely and get him treated ASAP if any of them present. He should hopefully be alright with the epilepsy because it's only girls who have it in my family so far. It's the AS that I am most worried about, but DH knows what to look for and won't let it go untreated like his did (his mum didn't take him to the dr so his progressed a lot further then it usually does).
@stellaluna14 I also have hypermobility. Have you dislocated anything yet? I did one of toes about 4 times just walking. It's permanently swollen now so hopefully that protects it a little bit. How are you managing it?
Little boy due July 31st 2016
This is my first baby, so I don't know what it feels like to protect your child, but I can only imagine I would do about 500% more and go a million miles further to seek answers and treatment for my little girl. Not only that but at the first HINT of an issue, I'll be ready for it.
My parents were blindsided because neither of them have a family history of IBD, but they did each carry a recessive gene for it. Mine also presented at a time when I was reluctant to discuss my bowel habits with them (18yo), so they didn't really get the same heads up that I will have.
By fighting your illness, you are already braver and stronger than you know or give yourself credit for. I reckon that will make you an even better Mama than you think!
I have mild cerebral palsy on my left side. I spent my childhood in braces and physical therapy; I walk with a slight limp; I call my left leg my peg leg because it's about 1/2 the girth (ew) of my right; I don't have hardly any dexterity in my fingers or toes or strength in my hand; All that being said, I feel incredibly lucky to have had a "normal" (whatever that means) life and pregnancy thus far. Walking is getting rough since balance is already not my friend (SO glad this has been an easy MN winter) and I'm awfully gimpy by the end of the day. I'll be scheduling an appointment with a physical therapist soon to see if there's anything we can do to ensure smooth sailing from here on out.
If anyone else is having difficulty walking, have you discussed temporary handicap parking? I will be bringing this up at my next appointment.
do you have a si loc belt? It has really helped
me with stability in hip and pelvis but not sure if that would helpful but you could ask your pt about it. I noticed once I had it my pain in walking greatly diminished