Life Updates

When I catch up with people, my response is always 'same old, same old' and overall that remains true {for which I am SO thankful - happy marriage, good health, happy & healthy kids, stable jobs, etc.}. However, there have been a handful of small changes that in total need a blog post!

MTHFR

Some of my {small} number of readers have been reading for long enough to remember when we tested Trent and me for MTHFR thinking it would be linked to Trent's behavior challenges and my anxiety. We never tested the girls, but Drew has been dealing with some anxiety for awhile and Brent said 'Do you think we should test the girls for MTHFR?' and I responded 'DUH! Why didn't I think of that!?!' So we tested both girls...and they both have at least 1 MTHFR mutation.

Drew - 1 copy of the C677T mutation {the more severe mutation, same as Trent}

Paige - 1 copy each of the C677T and A1298C mutation {same as me}

The girls have their well-checks next week, so I'll talk to their doctor about it, but for now, we've started them both on 1 of the over-the-counter supplements Trent takes.

Brent is curious about his own potential for mutations, but knowing him, he won't have any haha.

Gateway

Trent and Drew changed schools at the start of the year {Trent 'graduated' from our beloved Montessori school so he had to move schools, but Drew asked to move when he did even though she could have stayed at Goodwater for 4 more years}. I applied for all 3 of them to get in {it's a charter school that always has a long waitlist} and none of them got in initially. Trent ended up getting accepted 6 days before school started and Drew just 3 days!

Having the big 2 enrolled jumped Paige up a lot...but she remained on the waitlist...until the week before Thanksgiving! I panicked when I got her acceptance email because she was super happy in her classroom and I didn't want to switch her so far into the school year. Brent {the level-headed man that he is} suggested seeing what Paige thought and how she felt about it. I just knew she would want to stay at Goodwater, but she surprised me and was super excited to move to Gateway with her Bubba and Sissy! {Don't ask me about the amount of time I spent panicking, spiraling, and crying over this ha.}

So she started right after the Thanksgiving break and has LOVED it! She has 2 friends in the classroom across the hall {she has recess and PE with them} and a girl from her Girl Scouts troop is in her class and we didn't know it! Gateway is a much more traditional school, but Paige has settled in really nicely - she loves having homework {which takes her about 3 minutes to complete} and having a cafeteria, gym, music room, etc. It's been nice for me having all 3 kids at the same school again and on the same calendar {although their start and end times are different which is annoying ha}.

Sawyer

The final member of #theSwopeseven got a name and I never shared it! We haven't been able to see the baby since his arrival because their pediatrician has suggested staying close to home, but we should get to see him very soon! My girls are chomping at the bits!!

George 'Sawyer' Patnode!!

{George is a family name on David's side}

Girl Scouts Troop Leader

I've been a relatively active parent in both girls' Girl Scouts troops but especially in Drew's as she likes for me to come to events. Well, there have been some leadership changes...and I took the plunge and became a troop leader this year, eek. I'm one of 3 mom leaders, and one was a leader last year, so we aren't a group of newbies thankfully! It's been a lot of fun so far, and I'm excited to go to GS camp this spring {both girls will be there at the same time and it'll be each of their first times}!

So like I said - nothing earth-shattering but all together some decent changes/new information in our family!!

More Genetics Fascination

We had a check-up last week with Trent's MTHFR specialist, and once again, I left fascinated by what we talked about and also loving his doctor even more! She just really understands Trent's mutation SO well and gets him.

First off, Trent is doing SO good. I want to state that because we are just so proud of how hard he's come and the young man he's turning into.

The start to the school year was really rough for him, which we honestly fully expected, because he's been saying since the end of last year that he was really nervous to move to Upper Elementary. {Quick Montessori sidebar: You are in a Montessori classroom for 3 years - Primary is 3 years old through Kindergarten, Lower Elementary is 1st - 3rd grades, and Upper Elementary is 4th - 6th grades.} Even though Trent changed schools mid-year last year, he was really nervous about this transition because it meant he went back to being the youngest in the class. But after we got over the hump of the first 2 weeks, he's been great. 

I was describing all of this to his doctor, and she recommended we talk to his behavioral therapist about CBT {Cognitive Behavioral Therapy} which basically rewires the way your brain responds to certain situations. Well, guess what? When I talked to his therapist, that's what they're doing! HAHA! So I can check that off the list - love when those line up!

The next thing we talked about was his specific mutation. She pulled up his genetic profile and commented that he also has an FOLR2 mutation.  So his MTHFR mutation means he can't properly methylate folate, and the FOLR2 mutation means he can't absorb folate - kind of a double whammy. Luckily, the medication he takes helps with both! She wants us to increase his dosage when he turns 10, which is perfect being in the summer because messing with his dosage can cause a little bit of a regression until he adjusts to it. 

That led into her deciding to prescribe him a prescription size dose of Omega-3, it's considered a medical food apparently? This will also hopefully help with his anxiety and therefore his aggression and some of his ADHD tendencies {even though he's never had a formal ADHD diagnosis, we've had several comments about him having some tendencies}.

Then we also talked about the vitamins he {and the girls} take. I asked her about Vitamin D and how I heard you needed to take it w/ K to help with absorption, and she said that was true AND the version they formulate has the K - boom, yay! She also told me to stop giving the kids vitamin C - the real benefit is when someone is sick and you get a HUGE dose through an IV - like 40,000 mg, and it can leech your copper and zinc levels, and it is the most bio-absorbable {meaning absorbed through food}. Her recommendation was the Smarty Pants multi-vitamin, since it has methylated folate in it, but we've tried that before and [shocker] Trent doesn't like it. Knowing that his diet isn't the best - we're so proud of him for now eating apples, carrots, and bananas, but he doesn't eat anything green - like he threw up when we got him to try a green bean! - we're going to try her office's version of a 'super' greens powder. He doesn't like the taste of the version we've tried before [shocker], but she swears this one is good, so we'll see!

And there you have it! Our latest checkup on Trent - more really cool information. I still want to do a 23andme profile on the rest of our family since Trent is heterozygous for each of his mutations, and I know my MTHFR combination means the girls each have a 50/50 chance of each mutation, so it'd be interesting to see what the girls actually have. 

I'm sure no one is still reading this, but I love learning more and more about this!

Randoms

• I'm going to confess right up front this is a bit of a cop-out post. I have been working on my DITL post for this quarter and have yet to finish it. They are so fun but take so much time!
• I finished my juice cleanse! I thought it was pretty good. Some of the juices were hard to swallow but some were amazing. Just glad it's over although if it were cheaper I think I would so do it once a month.
• My sister got back her blood work on getting testing for MTHFR. She's got 2 copies of the A1298C mutation. Her doctor had no idea what it was when she asked to be tested for it and didn't know what the results meant. #givemeanhonorarymedicaldegree
• Is anyone else about to die of excitement over the Gilmore Girls reunion movies on Netflix? I feel like I see stuff about it online almost every day and am SO pumped.
• Trent and I started the 4th Harry Potter book. I dreamed for years about being able to read those books to my kids. He is eating it up, and so I am.
• Are there ANY good movies in theaters right now? Ugh.
• Our forecast calls for a lot of rain and thunderstorms. So much fun for a mom of a kid {Drew} petrified of thunder.
• Guess who's getting back in the gym this week?!?! Woot, woot! I have a 5K in 4 weeks, eek!
• These 2...ironically I took this picture on National Siblings Day {when I didn't even know it was National Siblings Day}.

Genetics...Part 2

*I apologize in advance. This post about all things MTHFR might be a little too science-y and boring, but I find this all extremely fascinating, especially the more I learn about it.*

One of the things I wanted to do after figuring out Trent has the MTHFR gene mutation was figure out where it originated and also if Drew has it as well. I figured I'd eventually do the same spit test Trent did, but when I went in for my annual and talked about it with my OB, she recommended we do it now with blood work. {I assumed I would be the one who passed it along, and both my OB and my primary care physician thought my history of post-partum was a good indicator it was me as well.}

And....drumroll please...

It's me!!!!!

For a simple science lesson, there are 2 problematic mutations on the MTHFR gene - one is at the A1298C point and the other is at C677T {which is more serious}. Given that we get a set of genes from each of our parents, a person has the potential to have 2 copies of each mutation. Trent has 1 copy of the C677T mutation {so he's heterozygous}, and I have 1 copy of each mutation {so I'm compound heterozygous}. The number of mutations you have and which gene your mutation is on determines how well you methylate. If you want to read more about what the mutation can do, this is a pretty good article that isn't too confusing.

The below chart shows approximately how well someone methylates with each mutation. {I circled me and Trent.} 

As with any condition out there, some people have a lot of symptoms that are connected to MTHFR while others have few. From what I'm reading, Trent's symptoms should have been a flashing light for anyone who knows about MTHFR. Luckily for me, I have a friend who does - and she has the same mutations as me - I find that highly amusing. {I was talking to her last night and told her that she literally changed my life and Trent's life. I will forever be indebted to her for her constant nagging gentle pushing to get Trent tested.}

This leads to such a waterfall of thoughts and emotions - mostly good and exciting. My sister wants to get herself tested {given I have 2 mutations, it's highly likely she has some} - could that explain her multiple miscarriages? We want our parents to get tested - I {we?} obviously got this from somewhere and if this simple test could help prevent Alzheimer's, heart disease, cancer {among so many things} for my parents, wouldn't that be amazing? Does this explain my mother's gut issues? What positive things could this potentially do for my niece and nephews?

It also frustrates me so much that so few people in the medical community know about this. First, when I think of all the doctors and specialists we saw for Trent and not one of them suggested this testing, I get really irritated. How many other children are these neurologists, behavioral therapists, and PhDs treating that a simple blood test and a daily dose of folate could help? Second, I have 3 friends who all have the homozygous mutation for C677T. All 3 have some combination of a history of fertility struggles and miscarriages. One friend only got tested because I suggested it {and her fertility doctor downplayed the results}. Could her mutations be the cause of her 3 unexplained {and devastating} miscarriages? And knowing she's homozygous, she knows each of her parents have at least 1 mutation - does this explain some of the debilitating issues happening to her mom right now? When will this testing become commonplace? It definitely needs to be NOW!

I checked in with my doctor to confirm my protocol and ask about Drew. I am curious if, at a minimum, she has a 50% chance of having a mutation {if Brent has any mutations, her chances just rise}, should we test her now or treat her in any way. Our doctor said to go ahead and start using the cream we use on Trent, and we can decide at a later date to test her.

So I now spend a lot of time learning {and talking} about MTHFR. I think it's pretty darn fascinating if you can't tell by how long this post is. If you are still reading this, you either have a mutation {hi Laura! haha} or just really like my blog. {grin}

Genetically Speaking...

I absolutely love this shirt...although it's probably inappropriate to buy for a 6 year-old.

We had a follow-up for Trent on Monday since starting treatment for his MTHFR gene mutation. I love his doctor so much. She understands so much about this mutation and everything she says makes so much sense. We talked about how he's doing, and bottom line he's doing great! We hardly ever have an outburst from him, he follows directions without arguing {mostly}, he's sweet with almost everyone, he is loving school... We added a supplement called Full Focus to help him in class because he is still having some anxiety about the new classroom {it's a bigger class, noisier, new teacher...}, so we'll see how that goes. I also want to eventually test Drew and then figure out if it was Brent or me who he {they?} inherited this from. If I had to guess, I'd say me, ha, but it'll be nice to know officially. 

Regardless, I am over the moon with how things are going - it's just frustrating that we spent so many years not having answers and feeling frustrated, defeated, helpless but thankful we have answers NOW.

Love this kid. #dowehavethesamenoseorwhat?

Finally...Some Answers!

I've been blogging about our journey with Trent for a long time. One of the 'to do' items after his neuropsych evaluation was to get Trent tested for the MTHFR gene mutation. As with everything in the medical field, it took some time to schedule the test and then get the results. But we got official confirmation this week.... Drumroll please...

Trent DOES have the gene mutation! 

{I know it might seem weird that I could be excited about this, but when you've been searching for an answer for 3 years, it's such an exciting moment to have answers!}

The best way I can explain this is the MTHFR gene produces an enzyme that breaks down folic acid and when it doesn't work correctly, your body doesn't break down toxins appropriately and they build up in your body which causes stress on your systems and can cause them to shut down and not work properly. {I think this article explains it really well and also has a link to the approximately 60 medical conditions that have been linked SO FAR to this mutation. Infertility, miscarriages, autism, ADD, anxiety, increased cancer risks, depression, post-partum...} I'm just starting to really research it, but it's pretty fascinating.

When we met with this specialist a few months ago, after talking about Trent's history and her observing him, she told me she was 99% sure he would test positive for the mutation, and she started us on a protocol for him immediately. It's something you add to in layers, so we're doing 2 things for him right now, and he's responding AMAZINGLY.

I'm so optimistic and while it's a little frustrating to think about what we've gone through {and spent} and especially what Trent has had to deal with, I'm just relieved to finally feel like we're moving forward!

Movie night in the park with my little love

Trent's Neuropsych Evaluation Results

I've been pretty open sharing about Trent's therapy over the past few years. I like being able to talk about it because it's cathartic for me, but at the same time, I want to respect Trent and not share too much {yes, it's our family, but ultimately, this is his story}, so I haven't talked much about his therapy in about 6 months. We've had good weeks, we've had bad...overall, we've had some forward momentum but not as much as I would like/hope. We've done some different group therapies {at first in addition to his time with Ms. Lauren and then in replacement of her} and just continued to power through with our little guy.

The next step that we've been working towards for awhile was a neuropsych evaluation. It took some time to find the group we wanted to work with, it took some waiting before the appointments, and it took some time for the results. Well, we got the results about 2 weeks ago!!! It was interesting because the doctor {who has been doing this for over 20 years} said she felt bad because she didn't have a conclusive answer for us and still no formal diagnosis. Honestly, I wasn't surprised. And almost everything we talked about it is what we've been talking about with every other therapist/specialist we've seen over the past 2 1/2 years.

So what were his results?

1. He's gifted. In some areas, his IQ is off the charts. While that might sound like a good thing {which it is}, gifted children {and especially boys} historically have more behavior problems.
2. He's hyperactive. This might be a duh thought for ANY mom of a 5 year old boy. They are NUTS. But Trent's hyperactive enough to be considered ADHD although he doesn't seem to have the 'attention deficit' piece of the puzzle. 
3. He's anxious. This one I didn't really expect but it makes so much sense with some of his fits.
4. He has some spectrum behaviors. Again nothing new here. No one has ever said he has autism, but his sensory issues are all consistent with being on the spectrum. The problems with transitions, things being too loud/hot/etc., his food aversions...

So what does all this mean? 

It means we're going to consider doing Applied Behavioral Analysis therapy {ABA} which is a little bit more of a formal/structured type of therapy. I don't know a ton about it, but his behavioral therapist, Ms. Lauren, has thought it might come to this, so again, I'm not surprised. We're also trying karate because Trent has been saying for at least 6 months that he wants to do it, and all the therapists he's seen have thought it would be great - it is apparently great for focus, concentration, self-esteem...all things that would be beneficial for Trent.

Our karate champ!

We're also going to have a blood test done on Trent because a lot of his behaviors are consistent with a blood disorder called MTHFR. I have a friend with this condition who has done a lot of research on it and suggested it to me. When I brought it up to the therapists who did the neuropsych testing they jumped all over it having seen kids with it that reminded them a lot of Trent. So that's scheduled for June.

Interestingly enough, the past 2 weeks {ever since we moved} Trent has been off the charts good. Brent and I find ourselves looking at each other multiple times a day in awe of him. His teacher has commented on how great he's being in class, too! We're definitely enjoying it {grin}!

So we'll see what the next round of everything brings about... To be continued as usual!