A Dystonic Mother's Journey

4 posts / 0 new
Last post
Muddee's picture
Joined: 03/13/08
Posts: 2119
A Dystonic Mother's Journey

Feel free to comment in my journal, I'm starting right at the beginning.

Muddee's picture
Joined: 03/13/08
Posts: 2119

A Dystonic Mother Part 1

May 15, 2008
I went to see a doctor at a drop-in clinic thinking a pulled a muscle, he tried to give me a placebo and send me on my way

Later that month I went to the Urgent care clinic...
I got perscribed a pain killer/muscle relaxant (an OTC one), I was told I pulled a muscle, and to go to a physio clinic.

June 5, 2008
I went to physio for my weekly session, the therapist said it appeared that I was getting worse. He told me to go to the Urgent care clinic ASAP.

At the urgent care clinic I waited for a long time, then finally got in. The nurse looked me over and asked me to wait, so I did it seemed like forever then the doctor came in took one glance at me and sent me to Emergency.

I arrive at emergency and the triage nurse looked me over did many of the routine tests, including asking if I took any illegal drugs, and I am pretty sure when I said no, she assumed I was a junkie (if you know me I don't even take tylonal) so it upset me her making those judgments.

I walk to my room, and the doctor started the poking and prodding, my mom showed up while this was going on. They asked a bunch of questions and asked if I was pregnant, I was hesitent because I didn't want others in my family to know and my mom isn't the best at keeping secrets. I said “I might be” cause my hubby and I were trying.

I had doctors and nurses checking on me often and drawing more blood for tests. All the test appeared good, and I found out I was pregnant, the doctor said I was somewhere between 4.5 and 5 weeks pregnant. The doctor wanted to do an MRI to see if there was something wrong with me, the MRI people told the doctor to do a CT scan first cause they really didn't want to expose my baby to the dyes they use, plus you normally have to stay still for an MRI. So off I went for a CT scan, it was clean.

Now the doctors had to figure out how to do an MRI since the CT was clean. They figured it out, the used the childrens medicines for dying and sedating me (I am fine in my sleep) and told me of the risks, saying if anything happens to my baby it would just be an early miscarage. So off I went to the MRI. After the sedation wore off I was sent home and told to go see a neurologist the next morning.

June 6, 2008
The neurologist looked at my MRI and saw nothing, he sent me for a couple of heart tests and more blood draws. Everything was still clean. After a few appointments he told me it looks like Generalized Dystonia and sent me to a movement disorder specialist, and my family doctor.

Went to the family doctor and he told me everything I knew. I mentioned the pregnancy and the jerk tried to convince me to have an abortion, that upset me quite a bit. I had heard that he was retiring from my brother in law, so I confirmed it, that day was a waste.

My movement disorder specialist was great! He provided me with alot of information and answered many of my questions, he offered to perscribe me some drugs that would help, but I declined and he was supportative of that, he understood that I wanted what was best for my baby.

Muddee's picture
Joined: 03/13/08
Posts: 2119

A Dystonic Mother Part 2

With Dana the pregnancy was pretty textbook, other then the "morning" sickness for 9 months and a super fast delivery, we didn't make it out of the house and grandpa delivered her 10 days early.

I expected my second pregnancy to be a breeze, oh boy was I wrong! My Dystonia caused my neck and shoulders to spasm all the time, it was the most painful thing I've ever been through and I didn't take drugs cause I wanted to make sure my LO was well taken care of.

After a month of depression and wallowing in self pitty with DH's support I decided to go back to work part time. It was difficult but helped keep my mind off of the discomfort.

I called my OB to try and set-up appointment but he does not take patients until they are 28 weeks, so his secretary gave me a number for a Prenatal clinic. I absolutely LOVED the doctor, she was great! When she got the results from my second blood draw she noticed my hormones were really high, suggesting I might be carrying twins, I was terrified at first but then I grew happy about the possibility, I got an U/S at 13 weeks and only one baby was revealed, they couldn't tell the gender because it was too early.

First trimester went by very slow but also very uneventful, I am glad it was cause the next 2 trimesters weren't as good. I hurt all the time but I did grow somewhat used to it.

Second trimester I felt better, I was having massages once a week and the pain lessened a bit. I had my 20 week ultrasound, and she looked perfect, the tech also told me I was having a girl, they couldn't get a good look at the kidneys and spine so they scheduled another appointment. The 3rd ultrasound went well my LO spine and kidneys looked good, they told me she was still a girl :). I lost 20 lbs in the first 2 trimesters.

Third trimester was probably the worst, I started it with a BANG! Ok it was more like a thud, I fell on my hardwood stairs and spent 12 hours in emergency to be told I was fine I had a slight abrasion on the head and a few bruises on my back, they sent me for an ultrasound the next day which revealed that all was fine except she was behind a week.

My OB was away for my a week on vacation after Christmas so I saw another doctor, she told me my belly seemed small for how far along I was and that my BP was high. She sent me for another ultrasound. It turned out alright so I thought. I was now suffering all sorts of fun pregnancy side effects including BH, I swear I was in the hospital or calling my OB because things just didn't seem right.

At 37w 1d my mucous plug fell out I went to the hospital to get checked out, I went for another ultrasound it reveled that Natalie was way behind, I was 37 w and she was measuring 29w, I also was told to schedule an appointment to see my OB at the hospital the following Sunday because of high blood pressure. Sunday came quick, I checked in at the hospital and he monitored me for a short bit and decided it was best for baby and I to deliver that day, my BP was extremely high and baby had very little fluid left around her. I was ready but scared.

Muddee's picture
Joined: 03/13/08
Posts: 2119

Natalie's Birth Story

Wednesday January 21

I got up and there was blood in my mucus, I spent the morning in L&D and at the end of the day was told I had lost my mucus plug and to come in Sunday morning for another exam at the hospital with my OB. All bleeding cleared up by Thursday morning.

Sunday January 25

10:00 AM - I showed up at the hospital and checked in, they promptly sent me to a birthing room and told me to change into the hospital robes then hooked me up to monitors. Baby was sounding great, I was not contracting but my blood pressure which was high for the past 6 weeks sky rocketed 150/105. Two things would be done to get my BP in check, first I was given heart medicine and second my water would be broken so I could have the baby and get my BP in control.

1:00 PM - My doctor was very busy so it took him till this time to break my water, he determined that I was 3cm and 25% effaced. I was then instructed to walk around to try and start labor, during 3 hours of walking I started having alot of contractions close together, I couldn't walk one circle of the hall without having to stop. I was getting tired.

4:00 PM - I laid down for a bit and got something light to eat, I was feeling horrible. All contractions stopped, so I decided it was time to walk some more, I walked for another hour but couldn't do it anymore, and the contractions weren't coming back.

5:00 PM - I was checked again, still 3cm but I was now 75% effaced, I really felt like I wasn't progressing, and I was really tired of walking. My doctor and I determined that I would be given pitocin to speed things up but he had to attend another delivery first.

8:00 PM - My nurse, started setting everything up, filled out paperwork and went over protocols, checking to see if I wanted any drugs, we decided to play it by ear, as things progressed.

9:00 PM - Pitocin was started, and almost instantly it started working I was feeling contractions, every one hurt pretty bad, but they got worse as the hour wore on.

9:45 PM - I was asking for a Demerol, so the nurse checked me I was 5cm and fully effaced, I couldn't have any drugs because I would be delivering soon, so the doctor recommended Nitrixoxide. Didn't like the hazy feeling it left me with for a few moments but it helped me through the pain.

10:00 PM - I felt alot of pressure in my vaginal region, and sure enough I was fully dilated! The doctors and nurses rushed about getting everything ready.

10:15 PM - After two good pushes, my baby girl Natalie entered the world.

Natalie Rose - Shortly after birth

Mom & Baby - Shortly after birth

Dana (DD1) & Natalie (DD2) - One day after birth