8 years living with NMO

June 23rd marks my 8th year being diagnosed with NMO. It’s a bitter sweet day to reflect on as I remember how much my life changed within a week. I remember so clearly; I was working at my family’s hotel in Frisco and I was riding the elevator down to the lobby when all of a sudden I couldn’t control my left arm. I walked into my husband’s office since he was the general manager. He looked at me and asked what the heck is wrong with me and to stop waving my arm around. I said something is not right and I need to get to the hospital. Within hours I was diagnosed with Transverse Myelitis, which they thought would likely be my only attack. They suggested that I should be fine after my 5 days of steroids in the hospital.

Almost 1 month later I had another attack where this time my whole body started shaking uncontrollably and I started to go paralyzed on my left side. This time we drove down to Denver and I was admitted to the hospital for 5 days again for IV steroids. They did another MRI and they changed my diagnoses to relapsing remitting MS. I didn’t know what to think when they told me I had MS but I focused on finding a neurologist to start MS medication right away. What a whirl wind experience I had to find a doctor and to start educating myself about MS and all the different medications I had to take. At one point I was taking 15 different pills, which did not include my MS medication that I had to inject into myself everyday.

In August again 1 month after my second attack I started to go blind in my left eye and the doctors did not understand why I was having such horrible attacks since I was on MS medication. My neurologist was second guessing I had MS so I was admitted again to the hospital for 5 days of IV steroids. My doctor recommended I go to the Mayo Clinic and get a second opinion as he thought I had Neuromyelitis Optica. When my doctor told me that I might have NMO he looked at Eric and I and said I would have a better chance winning of the powerball then being diagnosed with NMO. Well within a month I went to the Mayo Clinic and the doctor there agreed I had NMO. Now my life was going to change even more they originally told me. I needed to start taking Rituxan right away and the doctors could not guarantee I would get my vision back in my left eye.

Looking back all I went through and how much my life changed after being diagnosed with NMO it’s been bitter sweet. At one point through my journey I thought I would never be able to have kids and I would never see out of my left eye and I would never recover being paralyzed on my left side. I beat all those things; I have two adorable children, my left eye I can see out of, and for my left side it’s just more weaker then my right. I am very thankful I have seen some wonderful doctors that helped my dream of having kids come true. I have also met some incredible people because of having NMO and I wouldn’t have met them if it wasn’t for NMO.

Despite NMO I have a 3 year old now!

 

 

 

This past weekend we celebrated Sophie’s 3rd birthday and yes, it was elaborate. In truth, I know I can get, um, well, a little overboard but I can explain.

 

Sophie’s birthday is technically the end of this month but as a “long weekend baby”, we’ll probably always celebrate it a week early with our family and friends. On her actual birthday we reserve the day for just the three of us as a family unit.

 

Sophie, like all other children, is a miracle. But to me, her day is very symbolic and extra special. Living with NMO (neuromyelitis optica) I was told having children was not going to happen. They said it was dangerous to come off my meds, reckless, not enough medical evidence, etc. To Mike and I, that was just more heartbreaking news. But I worked hard to get back to an acceptable health. And I did my homework about IVF. Then I begged and pleaded my team of doctors until they agreed, with significant warning, to let us give it a try.

 

And then there was the entire IVF process…that’s a whole other post.

 

But in the end, we beat this disease just a little bit because we have her, our miracle baby. And every year on her birthday I’m reminded of how grateful I was and still am for all the love and support from our family and friends and doctors and medical advancements, and (I can go on and on – this is such a long list).

 

And my heart breaks just a little bit more when I think of how NMO might rob me of time with her. This month has been tough knowing we’ve lost one of our big advocates, Candace Coffee, and how her twins are just a year younger than my little girl.

 

So yes, I throw a party. I take months ahead of time to plan intricate details around her theme (this year it was “Princess”) and we celebrate. For this I won’t apologize, be judged or scolded.

 

And as I watched her have an amazing time with her new school friends, dance class friends and family friends, my heart is filled with more happiness than I could have ever imagined. We beat NMO a little bit yesterday, today and if I have anything to say about it, for a really long time tomorrow too.

The royal princess table setting for 12 kids.

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A special guest, Rapunzel, surprised the birthday girl with a visit.
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It wouldn’t be a party without a royal snack table.

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Hummus carriage (with zebras because we couldn’t find small horses).
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Glam station for when the royal guests arrived.
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And special cupcakes with ring toppers that each guest brought home. 11745600_10153490885309461_5620079337406472899_n

The bouncy “castle” was a real hit. cwvDm9asA3Lw9ZNWAbl5esWzZw-1

Her royal highness, Princess Sophie, is now 3 years old.11753743_10152960304720824_6670494545840344038_n DSC07119 DSC06976

Rituxan vs. Breastfeeding

I wanted to talk about the difference between when I had Allen compared to when I had Alana. I have had a very different experience with my NMO with each kid after I gave birth. After I had Allen I had to make sure I did Rituxan within 8 hours after childbirth. So needless to say I did not get much time with him after he was delivered. I had to go to a completely different floor to get my Rituxan since it’s a chemotherapy drug I had to be moved to the cancer floor. It took over 12 hours for them to infuse the Rituxan the nurse ran it very slow since I just gave birth. That was very hard for me as being a first time mom being away from my son for over 12 hours. By doing the Rituxan so quickly after childbirth my doctors were hoping it would help really decrease my chance having a relapse. After the first infusion I would have to do another round of Rituxan 2 weeks later at my doctors office. About week after my second round of Rituxan my NMO symptoms came back very badly. I started back on my daily symptom pills and was hoping for the best. About 9 months later I had a relapse ended up in the hospital to do PLEX. Within a month I had another Relapse ended back in the hospital for another round of PLEX. I was good for about 4 months when another relapse occurred and was admitted to the hospital again for another round of PLEX. After having Allen I really battle with my NMO even though I did my Rituxan very quickly it didn’t seem like it worked very well.

 

When I decided to have another baby this time I really wanted not to do Rituxan right after childbirth and try to breastfeed. Hoping that would maybe help prevent having a relapse. I had Alana 3 months ago and I am doing fairly well! Breastfeeding has been a challenge but I am hanging in there! My NMO symptoms are mild right now about a week ago they started coming back. The one symptom I am battling is horrible headaches, I went in for a nerve block and I hope it will work. I will honestly say I feel so much better breastfeeding vs doing Rituxan. My doctor is giving me till September to breastfeed then I will have to do Rituxan. I am hoping I will make it that long! I am being closely monitored by the doctors to make sure I do not flare. I go in every couple weeks to get my blood work checked, to make sure my levels are absolute. My whole family can’t believe so far how well I am doing with my NMO since having Alana. I am truly hoping this time I stay relapse free for awhile.

NMO and Pregnancy – A Patient’s Perspective

Both Erin and I have had successful pregnancies so we’re often asked how exactly we’ve done it. Truth is, no one really knows how we got so lucky (as we all know NMO is so unpredictable) but we did work with a great team of doctors, understood what we were getting into and built a plan that we think helped us stay on track.

Here’s our disclaimer: we are not doctors or ever think our opinion is superior. Pregnancy and NMO is not for everyone. This documentation is meant to provide insight into our journey and what we learned along the way. It’s meant as an external resource for those with Neuromyelitis Optica (NMO) who are considering pregnancy.

Q: I have NMO. Can I get pregnant?
A: Maybe. The reality is that there just aren’t enough documented cases of patients with NMO and pregnancy. There have been some successful cases, like ours and there have been some unsuccessful cases that have resulted in miscarriages and major NMO attacks.

Q: When is the best time for us to try getting pregnant?
A: Ideally you want as much time between your last attack and when you become pregnant. The longer time you provide your body with stability, the better. Our doctors recommended we wait several years before we even started the conversation about pregnancy. This is a conversation that should include your entire team of health care providers.

Q: I’m on a lot of medications. Are they safe for a pregnancy?
A: All immune suppressant medication, including Cellcept, Rituximab, and Imuran are classified as unsafe for pregnancy. Logically speaking, these drugs are meant to slow down an immune system, which doesn’t make sense for an unborn child who is developing an immune system inside you. There are several programs often affiliated with your local hospital that will help you determine which drugs are safer than others for use during a pregnancy, but remember, no drug is 100% safe during a pregnancy.

Q: But if I come off my medication won’t I suffer from another major attack?
A: Possibly. Ideally you want to wean off all unsafe medication (like immune suppressant drugs) and ramp up a suitable substitute (like prednisone) to provide you with some protection while you are pregnant. Only you can determine if you’re willing to take this risk with your body.

Q: Can I still try to get pregnant the good old fashion way?
A: You could but ideally you want to minimize the amount of time you are without the best treatment to protect you from another NMO attack. That’s why both of us decided to pursue in-vitro fertilization (IVF). That way we were able to time exactly when the unacceptable drugs were out of our system with a close date to when we would ideally be pregnant. Talk to your doctors to see if IVF is an option for you.

Q: What happens if I have an attack during my pregnancy?
A: This is something you’ll need to discuss as part of your plan and is very personal to you and your family. You’ll want to discuss your wishes with your team of doctors beforehand so everyone knows what you want should you experience an NMO attack during your pregnancy.

Q: Who should follow me medically while I am pregnant?
A: You’ll want to continue working with your existing medical team as they’ll be familiar with your history but you’ll also want to consider a high-risk obstetrician as some medication, like prednisone, can create additional problems like gestational diabetes, during your pregnancy.

Q: I’m worried about the delivery. Are there special considerations for patients with NMO?
A: It will depend on your wishes and what recommendations your team of doctors will make. Typically, if you’ve had a transverse myelitis (TM) attack you may want to consider a c-section to eliminate any extra pressure on your spine during delivery. Make sure you meet with your anesthesiologist beforehand to identify where the problem areas exist on your spine should you need or choose to get an epidural.

Q: My doctor wants me on my medication right after delivery but I really want to breastfeed. Can it be done?
A: It will depend how your pregnancy goes. If things go well you might have the option to delay your previous course of medication long enough to breastfeed for a period of time. Voice this desire with your doctors to build it into your plan. If you suffer from extreme symptoms or worse, an attack, during your pregnancy you’ll likely want to pursue the best treatment plan available as soon as possible so you can make sure you’re there for your new addition to your family. From our perspective we both chose to breastfeed for as long as it was safely recommended by our doctors – aside from all the regular benefits of breastfeeding, it also helped prolong the feeling of pregnancy for our bodies and allowed for a slower transition from pregnant to not pregnant, providing the opportunity to adjust.

Q: I’m worried I’ll gain a lot of weight during my pregnancy and will struggle to lose it once I start my treatment plan post-pregnancy. 
A: Like all new moms weight loss post pregnancy is a challenge. Build it into your plan to work with a nutritionist and set realistic goals knowing that movement isn’t always the easiest for NMO patients.

Q: Having NMO is already an emotional roller coaster. Can I handle a pregnancy?
A: Only you can answer that. Don’t get pressured into a pregnancy if you aren’t sure you can emotionally handle the unknowns and/or if you do not think your body can handle such physical changes. Be sure to have a positive support system available during the planning process, your pregnancy and available to assist post pregnancy. Be sure you talk through and agree on a plan for worse case scenarios.

She’s Here!!

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Congratulations to the O’Brien Miller family who welcomed Alana Joyce Miller into the world on March 9th, 2015. She weighed 6 lbs. 8 oz. and  is 19 inches long.

 

 

 

 

 

 

 

 

 

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Mum and baby are doing well.

 

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Big brother Alan is thrilled with his new little sister! He’s been busy teaching her about monster trucks and helping out at bath time.

Congratulations Erin, Eric & Allen!

30
Mar 2015
POSTED BY Lelainia Lloyd
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Erin’s pregnancy update

I wanted to give everyone an update on how my pregnancy is going. The last 3 months have been challenging I have been really sick with a bad sinus infection, ear infection and bronchitis. I have been seeing up to 3 doctors a week trying to get me better but between being pregnant and having NMO I just can’t win. I am now on my fifth round of antibiotics and three different inhalers I am hoping this will do the trick. Eric has even been blessed with me not having a voice for over a week now. Other then that baby girl Miller is doing well she is over three pounds and is always moving around in my tummy. I am currently 32 weeks which is almost 7 ½ months and I have been really blessed and I have not been having any issues with my NMO I am still getting my CD 19 count checked every month by my neurologist. I got the green light this month to try to breast feed this time as long as a do some pulse steroids, I am very excited about this since with Allen I could not since I did Rituxan three hours after having him. I am hoping this time with breastfeeding I will not flare at all after having her.

These last 2 months are going to busy around here we will be moving Allen out of his room and into what use to be our office. He is joining the big kids club and getting bunk beds, He wants his room to be decorated in cars and planes. I am trying to complete this project in the next few weeks so he can get adjusted to being in a new room. I also need to start decorating Allen’s old room for baby girl and getting everything ready for her. This last weekend we went through our storage unit and pulled out all the baby stuff and the bassinett. I am defiantly in nesting mode and trying to get everything ready cause I know she will be here before I know it. I am trying not to drive Eric crazy with all the things that need to get done cause I feel like we are under the gun and I just want to have as much done as possible before she is born. As we all know your life is pretty hectic after having a baby not to mention having a three old adjust to having a baby sister now.

5 Years Living with NMO

Last month was my 5-year anniversary of my 1st attack. I have to say I am truly blessed what I have overcome from that one day or actually that whole year. From being paralyzed on my left side and losing my vision in my left eye and going from doctor to doctor trying to figure out why I kept having attack after attack. Now looking back what I have all accomplished is making me realize I really am a strong and determined woman. Of coarse being diagnosed with a chronic illness forever changes your life and it takes awhile to understand why you? Some days are better then others and some days you are just tired of being sick and jumping through hurdles just to get through the day. I do have to remind myself some times I am truly blessed what I have over came.

Eric and I were so thrilled when we found out I was pregnant in 2011 with Allen. It was such an experience going through invitro and having NMO. A lot of people think it couldn’t be done or didn’t know how I would handle it? But I did it! It was the best I felt in years! After having Allen in 2012 was hard for me I was going through the change of being a new mom and my NMO was having fits and I had 3 flares within a few months I also gained a ton of weight due to all the steroids. In 2014 I said I couldn’t live being this heavy so I took charge of my health and started to become healthy again. Now since I lost over 66 pounds I feel so much better.

It is also hard for me to really sit down and think about truly all I went through from the beginning. I think the reason why is I don’t want to relive that awful year of being diagnosed it was so depressing. But sometimes you have to do it. Since that is what makes me the person I am today. I try to look at it from the prospective of now look what I have all accomplished! I still have to tell myself once in awhile NMO doesn’t define me I define what is NMO.

Taking Charge of My Health

 

When I remember how I felt this time last year I can say that I have come a long way. I have gotten off a lot of medication, which has helped me lose over 45 pounds. Last October I came to the hard realization I was over medicating myself and on the wrong medication. After consulting with my doctors we decided to take me off Lyrica and try Gabapentin instead. A month later I lost 20 lbs! This motivated me to lose   more weight so I evaluated my diet and acknowledged that I wasn’t getting enough exercise.

 

Over the last 2 years at the Guthy-Jackson Patient Day for neuromyelitis optica I listened to Elizabeth Yarnell’s talk on nutrition and if certain foods were contributing to our poor health. I finally decided to call her and see what she had to offer since losing weight was important for me and for my family. The first step was a parasite cleanse that lasted 20 days. It was very simple and easy to do. Next, Elizabeth had me draw blood to determine what foods made me more inflamed. Then we tested my urine for 24 hours to see how I digested food. After a week waiting for the results Elizabeth called me for a 2 hour phone conversation explaining my results and a plan.

I couldn’t believe what I learned! I was eating so many wrong foods that were making me more inflamed. For 2 weeks I was on a strict diet and could hardly eat anything. That was tough. But after that we started introducing certain foods again. I’m 4 months into the program and I’ve lost another 25 lbs. Elizabeth has totally opened my eyes about what I should be eating. All of my family and friends keep telling me that they can’t believe how healthy I look. They say I am glowing, they can’t believe how much weight I have lost and that I don’t have that bloated look anymore.

 

I am also working a personal trainer at the gym 2-3 times a week and I do Pilates twice a week. I am 23 lbs away from my goal weight, which was where I was before I was pregnant with Allen. My goal is to lose the last 23 pounds by June 25. My ultimate goal is get back down to my college weight in the next year or so. Between Elizabeth and my personal trainer I think I can do this.

 

Weaning off of breastfeeding

At first I was indifferent to breastfeeding my daughter. I had read all the studies that encourage feeding and the benefits so I knew I wanted to give her that time, but to me I didn’t get what all the excitement was for. Our start was rough – my daughter wouldn’t latch on properly and I grew very frustrated. I invested in a specialist for breastfeeding who gave us great tips but no real resolution other than hard work. Our goal was to make 6 months before switching to formula and solids.

Then I saw my Neuromyelitis Optica (NMO) doctors…

My rheumatologist manages my Cellcept and Prednisone intake. If it were up to him, he would have wanted me back on the immune suppressant drugs right after birth. That we managed to go 3 months of breastfeeding is great but I’m playing with fire. Even though I’m on Prednisone I could have a relapse attack at any moment.  No one really knows if my prescribed dosage is sufficient to ward off an attack.  He made a valuable point that my daughter would rather a functioning mother than a couple extra months of feeding.  He was also greatly concerned with how much and how long I’ve been on Prednisone for.  I have been taking an oral dose daily since over a year ago when we started the in-vitro process but there is no denying that the long term effects of steroid use is damaging.

Then I saw my neurologist and we thought of other options:
What about Rituximab? There isn’t coverage in Ontario for the use of that drug for NMO patients. Even though I could get it donated from a drug company, getting someone to monitor and administer it to me would be difficult.
What about other immune suppressant drugs that were safe for breastfeeding? I didn’t tolerate Imuran last time and why mess with something that obviously works well?  He thought it best to stick to Cellcept.

So, I resigned to the fact that on a certain date I’d start taking Cellcept and give up breastfeeding.

And then something magical happened. Just as I was ready to wean off the Prednisone (from the last year of use) and get back on Cellcept I discovered what everyone was talking about.  I guess when you take something away, like the ability to walk, see or even breastfeed, one can’t help but really see its value.  As I count down the days before I finally make the call and give up breastfeeding for good I cherish the moments that my daughter and I share together.  Those are the moments I finally feel like a mom.  Thankfully she’s taken to her formula meals via a bottle quite well.  Most days I feel like an insufficient mother because I can’t continue to feed my child as mother nature intended.  At moments I curse this frustrating disease and even after so many years now I still question “why me?”.

So for now I am grateful for getting as far as we have – after all, I did have a baby against the odds of in-vitro and NMO, and we did breastfeed for almost 4 months.

Is Breastfeeding the best feeding for me?

It’s no secret that breastfeeding provides tons of benefits to one’s child but it’s not always possible for all new Moms.  I’m indifferent to breastfeeding but in my personal opinion, the pros outweigh the cons so it has always been my hope to provide Sophie with at least 6 months of exclusive breast milk.

Throw in Neuromyelitis Optica into the mix.

My team of doctors have always provided me with excellent care but up until this moment I’m still not sure what the plan is (for the record, I’ve been breastfeeding Sophie since day  one and she’s now 7 weeks old).  During my pregnancy we discussed if I could breastfeed, what medication was safe and at what point I would have to start immune suppressant drugs but my doctors never came to a consensus so no decision was ever articulated to me.

So I did what every patient should do: I educated myself and became my own advocate.

Of course, I’m motivated to do what is in the best interest of my daughter.  Right now I’m on 20 mg of prednisone and 600 mg of gabapentin everyday, both safe (enough) for breastfeeding.  The gamble is how long I can continue this practice before I have a relapse (if it’s going to happen).  At what point do I stop breastfeeding and start immune suppressant drugs?  Will it happen and if yes, when?  If I stop breastfeeding too soon, am I robbing my daughter of necessary nutrients?  If I continue for too long, am I playing with fire and putting my own health at risk?

It’ll be another month before I see my neurologist, at which point I’ll discuss and decide then.  Even this one month makes me nervous now but I’m so busy with a newborn I don’t dwell on it.

Is there any other NMO patients out there who breastfed their kids?