This Is What We Know…The Latest On The New PPD Drug, Zulresso.

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For many women, having a baby is all they ever wanted. Pregnancy, and the promise of motherhood, will make you the happiest woman on earth. However, the reality for 1 in 5 women is a far cry from the what they always dreamed of.  Postpartum depression, anxiety, OCD, and other perinatal mood and anxiety disorders become the new reality, and for these women options are scarce.  Women suffer in silence. Mom guilt descends, screening is spotty, providers are untrained, treatment is sparse, and it’s one of the greatest causes of maternal mortality. So on March 19th when the FDA approved Zulresso, the first drug ever for postpartum depression, the game changed. But, initial reports of lengthy hospital stays and costs over 30K created a huge backlash from skeptics and hopefuls alike.

Lisa Tremayne is the Director Center of the Perinatal Mood and Anxiety Disorders in Long Branch, NJ. This center is one of only a handful across that country that is hospital based and provides support and treatment for women suffering from PMADs. Lisa has also been part of Sage Therapeutic’s (maker of Zulresso) advisory council and returns to the Bloom Foundation (she is also President) after meeting with the Sage team and other leaders in the PMAD field in Washington DC to discuss the next steps for Zulresso with COO, Shannon Hayes.

Shannon Hayes: When the announcement came that the FDA approved Zulresso, we were thrilled here at Bloom. I don’t think our phones stopped ringing for days. It was exciting, but then we started to see a backlash.

Lisa Tremayne: Yes, the pushback came pretty quickly.

SH: Because you are on the front lines, you see and treat women suffering from PMADs every day which is an unusual situation due to the limited number of resources around the country, you have a unique perspective on this issue. There are very few people like you and your team. You know what works and what doesn’t work…

LT: …and we see the collateral damages of waiting to get help. That is my number 1 frustration. So, here we have a breakthrough drug, the first drug ever for PPD and I wonder why anyone would feel anything other than – WOOHOO! Why, without the full answers, would one be against something so groundbreaking. I also assume this approval will open up a full new class of drugs. Every time there is a new allergy drug it is like, yay this is the best one! Why wouldn’t this be received the same way.

SH: I think you said it when you said “without full answers.” So let’s address that because we don’t have all the answers but let’s talk about what we do know. It has been reported that the treatment doesn’t come cheap—the average cost per patient is $34,000. Do you know anything more about that, how is that going to be addressed?

LT: The FDA approved this drug on March 19th, and now the process begins. The manufacturing, release, and launch looks to be about June. Again, I am not an FDA person, I am just telling you what I heard. Once the FDA approved it, Sage went to their insurance board and said –  here is what we have, here is what it treats and what will be the reimbursement for this or what information do you need from this. As of day 8 from FDA approval, they have had no negative feedback from insurance companies. There is an out of pocket and deductible expense, as there is with any hospital treatment. Everyone reacted to the wholesale price that was reported, but that is not the price that will be passed on to the consumer.

SH: Another pushback that has garnered lots of discussion relates to the 60 hours of IV infusion needed. One of the first texts I received after the announcement was  “What mom who has just had a baby is going to take the time away from their newborn to spend 60 hours in a hospital hooked up to an IV?”Do you feel this a valid push back?

LH: I feel this is an uneducated response. Zulresso is a tool in the breadth of drugs available, if needed, for a woman and for a family unit that is suffering the impacts of perinatal mood disorders. Say a mom scores off the charts for PMADs, hypothetically a 10 out of 10. Medication will work, but it will be 4-6 weeks before any real effects are seen, and that is if the correct med and dosage is given the first time. Can we help her with that now; absolutely? But, If you told me I could feel better from my allergies tomorrow instead of June, I choose tomorrow. Zulresso is the tomorrow choice. A woman who is going to be considered for this drug, or more likely will be suggested to receive this 3 day treatment after evaluation, is despondent. She is not intact in her family. She is not showering. She is probably not breastfeeding.

SH: Breastfeeding is another question that has been raised.

LT: If breastfeeding is a way mom is feeling attached to her baby, then she can pump and dump for 3 days. We do this when babies go into NICU, we do this if a mom gets into an accident and needs general anesthesia. This is not a bizarre request.

SH: So this is for the woman that is suffering so much that 3 days won’t matter because she is not engaged, she is not involved, because mom is sick.

LT: Exactly, mom is sick. I also did hear some questioning about the single mom. This is a valid question, and I think this is a wonderful opportunity for nonprofits and advocacy groups to step in and offer help. Help with child care, or financing so dad can take time off or for a nearby hotel for the family to stay… there are may ways to address this.

SH: Who exactly is this drug for?

LT: This is for the mom who is experiencing moderate to severe PMADs. A valid screening tool has been used and a team has made an evaluation and assessment of the mom. This is not a one size fits all. This is not a treat and street situation. This is not, okay you had your IV now off you go!  There is a responsibility to say- Hey, we think this IV treatment is your best option right now and when mom is discharged, here is her follow up treatment plan. She can’t go home and start thinking – I can’t believe I left for 3 days, I stopped breastfeeding, what mother does that? So she has to be in a PMAD specific treatment plan.

Remember, they are coming in for treatment at a time when they feel despondent, lost, are experiencing intrusive thoughts, are not connected. Wouldn’t it be great to take that time mom is hooked up to IV and get her started on some nice self care as well. Have a therapist visit and maybe a survivor who can let her know she is not alone, how about a little aromatherapy and lots of sleep. The goal is to get the mom back to feeling like a human being, not a monster, not a failure, not disconnected.

SH: A lot of blog posts and comments addressed sleep. Many suggested that any new mom who got 60 hours of sleep and rest would feel better no matter what.

LT: Of course, if you put any mom with estrogen and progesterone anywhere for 3 days with protected sleep they would feel better just to get the mental load taken off their hands. My questions is would be how would they feel 3 days or a week later.

SH: So with this drug they still feel better 3 days later? A week? A month?

LT: Yes, but it is not 100%, it is around 70%.  70 works for me. I would a take 70% chance. If it doesn’t work, there are still other options such as medications and therapy.

SH: So hospitals that will be given the opportunity to provide this drug will also need to have in place a comprehensive PMAD therapy plan.  Do you know if there are any physical side effects.

LT:  The only one I know of is somnolence, which means sleepy. I think this is a really good side effect.

SH: I was going to wrap it up by asking what your feelings were on this drug, but I think that it is pretty apparent.

LT: I think it is amazing in my lifetime to see a first drug for something, that part of it blows me away. I can’t remember a first drug for anything.

SH: Viagra?

LT: Viagra was a very good invention….for some people.  Maybe not women, hahaha just kidding.

SH: LOL, and Viagra is covered by insurance.

LT: So if erectile dysfunction pills are covered… this better be covered.

The bottom line is that postpartum depression and anxiety and OCD and psychosis and rage and all PMADs affect the health and welfare of the mom, their children, the family and society as a whole; and suicide is one of the leading causes of women after their first year postpartum. Our nationwide resources are abysmal and while there is no magic pill, Zulresso is one step closer to saving lives and THAT is worth celebrating.

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sharing your experiences with ppd

Helping Just By Being You

[vc_row][vc_column 0=””][vc_column_text]Over the years I’ve had the opportunity to meet many women at all stages of the PMAD journey, including many survivors. One commonality I’ve sensed amongst many survivors is that itch to help.   

But how? What can we do? We want to be open and have an impact.  We want to have a reason for “why this happened to us.” We want to protect other women.  We want these women to know that there are resources and they aren’t alone. I question myself though. I’m a writer for a couple of blogs and I’ve certainly written about my experiences. Is writing enough? Besides writing, I post often on social media about PMADs and related causes. And I’ll talk about my experiences with anyone who’ll listen. Is sharing my story at all helpful?  For me, it’s been 11 years since my youngest was a baby and it’s been 14 years since my true PMAD struggles. Am I still relevant? 

The answers to these questions are a resounding YES, YES and YES! Even though I’m not running a support group or making worldly changes (yet!), I am most certainly making a difference by the little things that I’m doing. I’m reminded of this often. And I’m also reminded that these “things” aren’t exactly as “little” as I think they are. 

An Old Friend Remembers My Story

A few weeks back a childhood friend reached out on Facebook messenger and shared with me that a friend at work had been struggling. 

Hi Melissa – hope you’re doing well. I was speaking with a coworker/friend today who has been going through a rough time lately. Kind of a long story but it’s possible it may be postpartum depression. I remembered your story and even just sent her your article. I was wondering if it would be ok if she emailed you. If you don’t feel comfortable doing that maybe you could point her in the right direction. I was really inspired by your story and by your dedication to the cause. I’m not sure if this is what she has – but any info would be helpful. Thanks in advance. 

My response:….Thanks for reaching out…I’d be happy to connect with your friend.  Whether it’s postpartum depression or not, I’m sorry to hear that’s she’s hurting.  Thank you also for your kind words….trying to help others and bring awareness is why I can’t keep quiet about it even tho it was so long ago. 

This mom and I were able connect one recent Saturday afternoon. Mom shared that she has 3 children, ages 2, 4, 6, and after she stopped nursing her 2-year-old, she began to feel “different.” She didn’t know what it was, but she simply didn’t feel like herself and was having racing thoughts and feeling very anxious. Mom also said that she almost felt like she was living outside of her body. I chimed in with “Oh! Depersonalization! I remember that feeling” and she responded with a sigh and said that she didn’t even realize it was a real phenomenon – and even had a name! I spoke of times where I felt similar and she says, “You’re going to make me cry.” 

Mom was finally speaking with someone who understood. I was someone who had similar experiences and I could relate to what was going on in her life. I couldn’t make it go away, but my words were eye opening. She knew that I “got it” and it was reassuring to know that she wasn’t alone. We probably chatted for about 30 minutes, with many “me too” moments – from both of us!

At the end of our conversation I referred her to the local support group in Westchester County (facilitated by a friend of mine). I ensured she had information about the upcoming meetings and the group’s Facebook page and recommended joining, if she felt comfortable. A few days after we spoke, I peeked at the “members” in the group and saw mom’s name there. I’m hoping she’ll get to a meeting or two, but either way she’ll receive the posts and daily inspirations from the other moms in the group. 

The Many Facebook Groups

As we’ve all become accustomed to, Facebook has many groups that we can join and there are no shortage of groups and resources related to PMADs.  Truthfully, I belong to so many PMAD groups that sometimes I feel numb to posts. It can get overwhelming and at times, even triggering, but there was a recent post that came across my feed where a mom was asking for a support group in lower Westchester or Southern CT.   

Being that this was local, it caught my eye, as I knew I had information and resources to share. I chimed in on the post asking mom to message me and then I’d send her along some information. We chatted briefly via Messenger and I relayed the information about the local support group in Westchester. Again, I suggested that she join the Facebook group, where she would receive information on meetings, events and get to know some of the mothers. A couple of days later, as I was scrolling my feed, I noticed that mom had joined the group and commented on a post or two – and I was thrilled to learn that she attended the most recent meeting!    

I felt a sense of satisfaction that maybe I played a small part in her healing process, but also a sense of gratitude that I had the resources to connect her to other women with similar experiences. 

Do I Still Belong?

As mentioned earlier, my youngest is 11 years old. My eldest is 14 and it was after he was born that I suffered from PMADs, specifically Postpartum OCD. That brings us back to 2004/2005. There were no Facebook groups back then. There were hardly any support groups, let alone anyone who was talking about PMADs.  

It took me over 14 months to be officially diagnosed and to find help. With therapy, medication and time I got better. The years went by and my involvement in the PMAD community grew. Through networking and an online presence, I met local women who had similar experiences. It definitely wasn’t a big audience, yet the connections were helpful.   

In 2014, I met a local PMAD survivor who had started a support group.  For all intents and purposes, I was “cured” and while I didn’t “need” the group, I went to some meetings to stay connected, as well as to offer support and any resources I could as a survivor. And no matter how many years went by, it was still quite comforting to hear so many “Me too!” Over time, the group evolved, changed leadership and membership grew. Word was getting out and it was amazing to witness.

I attended meetings here and there, but I stopped going regularly – due mostly work and family obligations, but there were other reasons as well. First off, I hadn’t been in the throes of the illness for many, many years. In addition, I didn’t want any of the newer moms thinking “Oh my, her kids are older and she’s still coming to group! Why is this lady not cured? They told me I’d get better!”  I wanted to allow these women the freedom to share their stories. The group provides a safe space for women and it was their time to be heard and to share openly.   

This past December, I decided to attend the last meeting of the year. I wanted to see all my ladies!  Towards the end I stayed behind with the group leader and another group member to catch up. The topic of “where have you been?” came up. I explained my thoughts – and the two of them completely disagreed with me!  The group member responds that she always remembers the words I had at the first meeting we were at together – that I found support and got better. My words gave her hope, and to this day, she always appreciated and remembered what I had said. They were both thankful that I came to the group of as a survivor and as an example that things do get better. Simply by sharing my survivor story, I did belong – and I was still relevant. And both of those were a help to the group.

Helping Can Be Subtle

Funny thing about this PMAD community is that when we are strong enough and out of the throes of this illness, we want to help in our own individual ways.  We come out of the illness with this determination that leaves us feeling like “Uh-uh. What was that? All I know is that I will not let another mother suffer like I did.”

If you feel guilty about not doing enough, or about not starting a support group or being active enough in the cause, think hard. You probably do more than you realize. Reflect upon yourself. Don’t be surprised if someone who remembers your story shares it and connects with you out of the blue about their friend who is struggling. And asks you to reach out to said friend. And when said friend feels confident enough, hopefully she’ll do the same with her own story and so on and so on. You can help just by being a survivor. You can simply help just by being you.[/vc_column_text][vc_separator][/vc_column][/vc_row][vc_row 0=””][vc_column width=”1/4″][vc_single_image image=”2537″ img_size=”full” style=”vc_box_shadow_circle”][/vc_column][vc_column width=”3/4″][vc_column_text 0=””]

About Melissa

Melissa Jacobowitz is a Bronx native who moved to Westchester County after she and her high school sweetheart got hitched in 1997. She and her husband currently live in Mount Kisco with their two children, Corey (14) and Mia (11). Melissa is a two-time survivor of Postpartum OCD. In order to raise awareness for perinatal mood and anxiety disorders, she volunteered for Postpartum Progress, which was a peer-to-peer organization to support women with maternal mental illnesses, and is an active member of the Westchester Postpartum Support Group. Melissa initially became interested in writing to just share her journey with Postpartum OCD, but has found that writing is newfound aspect of her life that she thoroughly enjoys. She was also a contributing writer with Suburban Misfit Mom and you can find her stories at http://suburbanmisfitmom.com/writer/melissa-jacobowitz/ Melissa is also a featured writer in the book “A Dark Secret,” which is a compilation of where 15 women share their stories of maternal mental illness from diagnosis to recovery.[/vc_column_text][/vc_column][/vc_row]

how to teach friends how to deal with your ppd

3 Ways To Teach Others How To Deal With Your Postpartum Mood Disorder

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Ok, so you have someone in your life who doesn’t understand what you’re going through… or maybe a bunch of someones?

How do you get them to understand? You teach them. I’m a teacher and if I have a student who doesn’t know how to accurately cite research using MLA parenthetical notation (please keep reading, I’ll stop nerding out after this analogy, I promise) then I need to teach it to them. This instance with your partner, in-laws, parents, friends, co-workers – fill-in-the-blank – is no different: it’s a teachable moment.

What I have learned while getting treatment is that majority of women suffering from Perinatal Mood and Anxiety Disorders (PMAD– the real name since it can start during pregnancy) are helpers. We are teachers, nurses, doctors, therapists, etc.… we help others. We tend to put others’ needs before our own and calling someone out for their insensitivity can go against this need to “help.”  However, having someone in your life who is making your healing process more difficult won’t help anyone or anything, including your relationship with that person.

So, how do you “teach” someone about what you’re going through? That’s entirely up to you and it may be different based on who the person is that needs an education, but these 3 ideas may get you started:

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  • Talk. It seems simple, but sometimes talking is anything but simple. Figure out your words ahead of time and then schedule a sit down to discuss your feelings in a safe place. You may even want to write down your thoughts first so you can figure out the major points you want to make. When it comes to matters of the heart, it can be easy to ramble. Try and stay true to your big issues or points and avoid language that would make whoever you are speaking with feel attacked (“I feel a lot less anxious when visitors wash their hands before touching the baby” versus “I’m asking you to wash your hands, which is a simple request, but you continue to not do it”).
  • Ask. Ask someone to do the talking for you. Communicate with your speaker what you would like to be said, but make sure that you trust this person and they have enough knowledge of the situation to adequately respond to any questions the non-understanding party may have.
    • My husband took this role and it made me less anxious than having to do it myself (because I KNEW I would cry if I had to do it myself). BUT, I had to really hold back asking him incessant questions like: How did they take it? Were they upset? Do they think I’m crazy? Do they get it?
  • Educate. Politely send them *up-to-date* literature about PMAD so that they can learn on their own. You can print articles to give them or you can send them links via email, text, or social media.
    • This is a great hands-off approach that would allow the other party to process the information on their own time and in their own space. We all know people who would somehow turn a friendly and open discussion into them being attacked ::eye roll:: This is the way I would handle that kind of person – they can bitch and moan privately and once they put on their big-boy/girl pants then you can one day have a discussion together. You may also want to include in your message that you aren’t ready to talk about it in person at this point, but thought it would help them to better understand what you’re going through in the meantime. That way they don’t see the literature as an opportunity to get their two cents in because, guess what, it’s not about them.

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What if they are not teachable at all?

What if you tried any/all of these tactics and nothing worked?

What if being around this person continues to trigger your symptoms?

My advice is, and this is going to be harsh, to just say “fuck them” and move on. If they aren’t aiding in your recovery then perhaps they need to take a backseat to your needs and you can return to them once you are healed. Because guess what? You WILL heal. And just like you, your relationship with that person can be healed too.

I love you. I see you. You’re doing a great job.

[/vc_column_text][vc_separator 0=””][/vc_column][/vc_row][vc_row 0=””][vc_column width=”1/4″][vc_single_image image=”2493″ img_size=”full” style=”vc_box_shadow_3d”][/vc_column][vc_column width=”3/4″][vc_column_text 0=””]Amy Brewer

Amy is married to her best friend, a mom to a wonderful baby girl, & a pet-mom to two cats and a dog. She enjoys watching Netflix, drinking wine, & laughing at her own jokes (she may even have chuckled as she wrote this).[/vc_column_text][/vc_column][/vc_row]

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