Embrace Watch – A Month Long Journey

Last month I did a one week review about the Embrace Watch by Empatica. There were some pros and some cons, now I am here to give you a one month update on how I feel about the Embrace Watch. In this time frame, updates were made on behalf of Empatica and I got a better feel for the watch. If you are still on the fence, take a quick read to help you form an opinion before making the plunge. Click here to read my other review as well if you want more background on the watch. Enjoy! And just for reference, I am not affiliated or sponsored by Empatica – everything that is stated is based on my personal opinion and experience.

__________________________________________________________________

One Month Review – The Pros

As time went on, the watch became far more accurate with my sleep and activity cycles. It has not confused the two or doubled them together, as this was an issue I had within the first week. On May 17th, I had an episode of a questionable seizure, I woke up not breathing which occurs during my seizures at times. Now the watch cannot pick up seizure activity for me because I am currently pregnant, but it did pick up that instance. It recorded it as an interruption and paralleled the same time a woke up during the night gasping for air. No, I do not have sleep apnea, never had pregnancy induced sleep apnea, never had any issues of this. I was quite pleased and excited it recorded this activity, just wish it could of recorded any convulsions. I will say that day, my body reacted as it would for a typical nocturnal seizure – so I am leaning more towards that being the case.

Another amazing accomplishment, I got the Mate App to finally work on my LTE network. It was the most frustrating thing ever to not have access if WiFi connection was not established. Granted I still need the Wifi to be on, even though it is not connected, I was finally able to access the Mate App.

I also have not had any issues with the charger, thankfully. Everything in that department seems to be in working order. Also, with the new update – GPS location tracking is now a thing! This was great news and I was super excited about this since I am out cold for what feels like forever. This will allow my family to locate me and help get assistance to me if any was to occur when I was alone or at school/work.

__________________________________________________________________

The Cons

A common issue that has been reported through the community is issues with Bluetooth. I had not experienced an issue with Bluetooth at all prior to May 24th – when I went to Connecticut and stood at a more rural location than where I live and work. The Bluetooth range was not the same as it was at my house, it disconnected and reconnected more frequently, and seemed to struggle more with transferring information. I thought this was strange, so I made a point to carry my phone with me at all times – still had issues from time to time. At first, I thought perhaps it was my phone, but when I returned home, it was fine. I am curious on where the other people are located who have issues with the Bluetooth – location may play a role in this.

If you have been following Empatica’s blogs, you may notice the service charge fee will be going into effect soon. Now, you are free to test the services yourself, but when your trial is done – here is the price breakdown:

  •                 Lite: $9.90/month -Alert one contact when a seizure is detected
  •                 Standard: $19.90/month – Alert 3 contacts, also notify them by text as well as phone call. In addition, they will Receive the GPS location. You will be able to also have access to the “Rest Mode” – which helps the sensitivity of detecting seizures.
  •                 Plus: $44.90/month – Alert unlimited amount of contacts, alert by text with GPS as well as having access to “Rest Mode.”  Includes summarized monthly reports capturing your seizures, rest, and physical activity.

Now logging of seizures, activity, and sleep on the Mate App will still be free – but the main purpose of why so many bought into the watch is not. Now, my personal issue here is the overall price for a product that is still quite honestly – needs some more work. The price of the watch is already steep, now you are going to ask for payment when it needs more fine tuning. I cannot get myself past that.

Of course, if you are a parent/caregiver paying for this – sure it may be worth it to you. Now, if you are more in my position and must pay for the services yourself and can only work a limited amount of hours due to Epilepsy – it can get pricey after a while. My whole purpose of buying this watch is now tacked on with a monthly fee. I do not even know if this watch will even truly pick up my seizures yet. If you go into the community Facebook page – some people who have tonic-clonic seizures do get picked up, some do not. There are still a lot of issues with false reporting/notifications. I personally feel they should have waited a bit longer before imposing this, but this is their decision and to me – a huge turn off.

__________________________________________________________________

Final Thoughts for Month One

As much as I do enjoy and love the watch, I do not think it is worth or up to par to have a subscription fee just yet. Will it get there one day? Definitely, but I do not feel it is there yet. Again, this is just my opinion. I strongly feel that they should allow ONE contact, at the very least, to be notified in case of a seizure – to me that was a huge selling point.

Now to be fair, there is another watch by Smart Monitor, called SmartWatch that also detects tonic-clonic seizures. This also requires a fee for the watch as well as a subscription fee that is similar to the Embrace Watch when it comes to contact. Now, they do not give you a break down on their site upfront, but from a UK site – for a single contact to be notified, it will cost around 15 EUR which is $16.90 USD. So Embrace is a cheaper option in comparison, but I cannot comment on which has a better ability and accuracy level.

For me personally, at this moment of time, the watch is of no use to me. I cannot fully use it till after pregnancy and then between school, work, and a newborn – I will have to manage money for a monthly fee on something that is still a work in progress and may not even work for me. So, I have decided to find this watch a new home. There are people out there who could use it now and use it more so than myself. While yes, I am terrified of what is to come after childbirth and going through seizures without warning…I am not sure if this watch will actually be able to help. I sincerely hope someone else can reap the benefits and have a sense of security.

_____________________________________________

Are you unhappy about these changes?

A petition has been started by Rachel C. – a fellow Embrace user –  to use our collective voice in hopes to see changes be made about the new subscription fee. I ask you to take time to consider signing this petition, even if you do not decide to purchase this device. If you are just as unhappy about these changes as us, please sign and share! Just click the photo below

 

A Very Special Announcement

It has been some length of time since I last stopped by, I am sure this may lead to some of you wondering why. Well, between being a student and working, I have been blessed once more with a beautiful gift; I am expecting baby number three! As you may know, I have previously blogged about Epilepsy and Pregnancy (click here to take a peek); now I will be able to post my experience as I go along and answer questions in real time. I hope this helps some of you who are thinking about pregnancy, are currently pregnant, or are curious about pregnancy and Epilepsy.

 

_________________________________________________________________

Wait, how long have you known? Why the wait?!

Truthfully, I found out back in November. I had the inkling that I was pregnant due to an increase in nocturnal seizures (which is typical for me and typical for some others to have an increase in seizure activity due to hormones). We were indeed actively trying due to other health circumstances that have been bestowed upon me. These health circumstance will impact my ability to carry children and sadly this will have to be my last pregnancy for the sake of my health. This time around, I was actively seeing an ob/gyn due to the circumstances and began taking folic acid at 4mg and prenatal vitamins before conceiving, as well as continuing with my B6, fish oil, and Keppra. During this time my Keppra dose also seen an increase due to being diagnosed with myoclonic seizures – which did aid in decreasing the frequency of these seizures. In due time, I had one large nocturnal seizure, noticed a huge decline in myoclonic jerks, and soon enough seen a positive pregnancy test. My partner and I could not be any more thrilled as we welcome a new child into our life.

Currently, I am 18 weeks and 1 day and due date is still set for August 1st, 2017. I wish I could say it has been smooth sailing, but we had some bumps early on. While my health issues reproductive wise do pose a threat, I was also diagnosed with a fairly large subchronic hemorrhage (abbreviated as SCH), also known as a subchronic hematoma. A SCH is an accumulation of blood between the fetal membrane, next to the placenta or between the uterus and the placenta itself. It can cause light to heavy spotting, but some women have no bleeding at all.  SCHs typically tend to affect 25% of all women in the first half of pregnancy and will typically resolve on their own. Unfortunately there is no direct cause or way to prevent this from occurring; it is one of those events that “happen” and is due to the egg slightly separating or tearing from the uterus. Sometimes you will also hear it referred to as a threatened miscarriage – as yes, there is a possibility for a miscarriage to occur.

(Photo pulled from Google as an example; for reference my SCH was the size of the gestational sac)

Thankfully enough, when my bleeding start I was at work and the ER was just downstairs. I tried my best to remain positive when I saw the blood, but as it got heavier, thoughts rushed back from my first miscarriage. I could not shake it, I could not bear going through it again. Unfortunately, and realistically, I knew there was nothing I could do but hope. So that is what I did, I kept faith and hoped. Soon enough I had an ultrasound, I was relieved to see the heartbeat. The bleeding had slowed so I assumed everything was going to be okay. Not the case. The doctor came in and explained the fetal heart rate was quite low and to expect a miscarriage within the week. My heart sank. It sank even harder because everything seemed okay. Everyone told me not to worry, everything looked fine. Moments later, here came the doctor to rain on my parade. I broke down immediately. I could not believe what I was hearing. The flicker I just saw would soon be blown out, yet again.

With a heavy heart I went home to await my early meeting with my new found life. I did exactly what I was told: rest, stay on pelvic rest, hydrate, and try to relax. Easier said than done, but I did just that. My ob/gyn did a follow up, that whole week seemed to drag. To my surprise, there was the flicker with a healthy heart beat. S/he proved the ER doctor wrong; they were holding on. Unfortunately the SCH was still there, but all that mattered was that flicker.

Due to this, I chose to delay announcing. I did not feel comfortable explaining to everyone if a negative event occurred. Around this time, I was still having nocturnal seizures (which is atypical for me) and did not feel like I was going to have a positive outcome. But here I am, with my little one snug inside, telling you my story.

________________________________________________________________

What about your Seizures?

As of lately, I had not experienced any tonic-clonic or myoclonic seizures. Although, I have experienced a couple more nocturnal and this is becoming concerning as usually all forms stop during pregnancy. To be fair, I did work more than my recommended amount due to missing days. Now I am back on my normal schedule and things have been fine.

I will not lie and say I have not had any anxiety building up as I approach the halfway mark. In my other blogs, I talk about some scary episodes where I had seizures and very well could of compromised my children’s life. This is the unfortunate reality of those who wish to parent and live with Epilepsy. Due to this anxiety, I am starting to look into seizure alert watches as well as requirements for a service dog. I do not think I will meet the requirements for a service dog realistically, but hopefully a watch will be reliant enough. My partner will also be moving in, which will be in itself a huge help and makes me feel safer. As he says “we’re in this together.” I also started to do yoga again and music helps as well with unwinding. I will do everything in my power to keep my family safe – even if it is from my own condition.

________________________________________________________________

               Doing anything different this time around?

Aside from the fact I was more proactive with folic acid and other supplements and intend to invest in a seizure alert system – I am planning on giving breastfeeding a chance. This will be a completely new experience that again, raises some anxiety. Since the birth of my first child and being strongly advised not to breastfeed while on Keppra, I have been following research carefully. With my second child, it was a more “up to you” response when I approached health professionals, so this time I dug as deep as I possibly could. One site stated that during lactation, doses up to 3500 mg daily produce low levels in breast milk and would not be expected to cause any adverse effects in breastfed infants (https://www.drugs.com/breastfeeding/levetiracetam.html). Luckily, I am under that quota at 2000 mg daily so it would be considered relatively safe by those standards. However, the infant will need to be monitored or drowsiness, weight gain, and developmental milestones as a precautionary. Although, in my case, my children were monitored for this regardless due to being on Keppra during pregnancy. If you have not had children yet, doctors may use the wording “sleepy baby” to describe babies born to mothers on Keppra. Babies tend to sleep more, are drowsy, and/or be more calm than those not born to Keppra mothers.

In another study in 2005, results yielded that levetiracetam does transfer into the mother’s milk, but does not pose any risk or harm to the infant due to very low serum levels. These serum levels were actually lower than what was found in the umbilical cord, therefore breast milk contains less than what the infant was originally receiving (https://www.ncbi.nih.gov/pmc/articles/PMC1363376) . A 2013 study that was published in the Italian Journal of Pediatrics also supports this claim if the dose is below 3000mg a day (or 3g a day as the study states; https://ijponline.biomedcentral.com/articles/10.1186/1824-7288-39-50), it will pose no harm to the infant .

You will find sites stating to not take Keppra while breastfeeding and this may become concerning. Unfortunately, the reason for this is due to lack of studies to completely verify Keppra as safe. You can equally find an number of testimonies of women who breastfed on Keppra and their child having no complications. I suggest talking to your ob/gyn/midwife as well as your neurologist. Often, we have to see a maternal-fetal specialist who you may also ask. From my personal experience, they could never give me an actual answer other than it being my choice. Although, after doing research as well as seeing other mothers who have been through it, I have decided in my circumstance that the benefits outweigh the risks.

________________________________________________________________

Do you have any information you would like to share?

Any questions you may having regarding Epilepsy and Pregnancy?

Leave a comment below!