Nine.

It’s been about nine years since I first started noticing that something was going on with Sean.  That makes sense because it was about nine years ago when he received the H1N1 flu shot and began to have low muscle tone issues.  It’s when he stopped meeting his milestones.  It’s when the hell of this journey really first started.  I said hell and unfortunately, I mean it. This is not fun for him and it certainly isn’t fun for the rest of us either.  Most of the time I feel the worst for him, but I would be lying if I didn’t admit that it’s really taking a toll on me emotionally and physically. It’s hard on our whole family.

I wouldn’t wish autism and PANDAS on anyone.  I’m really not sure which is harder as the lines between blur together and they are hard to separate. The neurologist talked to us about the perfect storm that probably led to where we are today.  Vaccine injury. MTHFR double gene mutation. PANDAS aka immune system dysfunction. Inflamed brain. Autism. Sadly, I didn’t know this nine years ago.  I tried and tried to get answers and didn’t.  It took three years just to get the autism diagnosis, but what might be different now if I had known about PANDAS and stopped it before so much damage was done?  What if our pediatrician would have listened to me? What if I would have known about biomedicine when he still had words, when he was still behaving “neurotypically” to the rest of the world–although I always knew something wasn’t right.

What if. What if. What if.

We are going through an extremely hard time with Sean right now behaviorally and to be honest, I don’t know exactly why. I think it might be a few things going on, but it always just feels like a stab in the dark trying to figure it out.  The doctor who would have been the biggest help to me has closed his practice completely. We have an appointment with our biomedical doctor, but not until early November.  Our pediatrician (not the one he had in the early years) is wonderful and understanding, but can’t really help with this stuff. Talk about feeling helpless.

Before recent weeks, I would say the hardest thing about this journey (beyond the no talking and rough patches of no sleep) was that we can’t do things like other families can do. We can’t just hop in the car and go to celebrations, visit museums, go to restaurants or movie theaters, etc.  Church for me has been almost nonexistent for months and that really stinks. However, we used to be doing okay if we just stayed home in his familiar place.  That’s not really the case now.  His behavior has been so tough, even at home.

The best way to describe his behavior is to think about an 88 pound toddler going through a very rough case of the terrible twos or threes. You can’t leave him alone for even less than a minute. When he doesn’t want something instead of shaking his head no or signing “all done” like he used to, he smacks it off the table.  It’s not all the time, thankfully, but he’s been playing in and even sometimes eating his poop if he’s given more than a minute or two alone. If you are eating at the table and have a drink, he will think it’s super funny to come by and dump your drink out all over the table. He’s tearing things up, knocking things off tables and shelves, etc. Spitting his medicine out. Taking off from the dinner table with some of his drink in his mouth and then spitting it all over the carpet and furniture is another one of his latest tricks.  Kicking holes into the walls even when he’s not angry. So many of these things have happened here and there in the past, but lately it’s been multiple things in a short time period.

Just about every day, I hear not so great news from the therapy clinic about his behavior.  He especially hasn’t been doing well in speech or OT. He won’t keep his clothes on there lately which is so frustrating. I need to know these things of course, but it’s so defeating. I feel like we try and try with him and nothing really every gets better.  It might for a short time, but then it gets worse.

I’m still waiting on one letter from the doctor to file my insurance appeal. Just about every area of life with Sean is falling apart right now and I feel completely helpless and utterly exhausted.  I am a strong person, I know that I am.  However, even the strongest of people have a breaking point. If I didn’t have my faith and my family, I would be done.

I’m not sharing this for pity.  I’m sharing this because this is life with a child that has level 3 (severe) autism. I’m sharing this because my family needs help.  We are trying to help him in every way we can at home. Financially, this is really tough.  Physically and emotionally, probably even harder.  The state of Michigan does not help us with a penny.  We can’t get respite care.  Our insurance company is taking away ABA (behavior therapy) time from him which we are fighting against.  I do not have a good school option for him. We need hope.  We need the tide to change in our favor.  We love this boy so much, but are feeling pretty helpless to really help him right now. Thank you for listening.

If you are a prayerful person, please pray for us.

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Let’s get real…

Sean had an AMAZING day on Friday both at home and at therapy!  In fact, he got the best report I’ve seen in quite awhile. I could tell a difference before I took him there on Friday morning.  He was listening so well.  He was very attentive and making good eye contact. He let me stop and “count his freckles” multiple times and  he laughed and laughed each time. He took off his shoes shortly before we were leaving the house.  I told him once to get his shoes and put them on or he couldn’t leave for school.  He went and found them and put them both on in just a matter of minutes.  This is not typical.  Usually you have to ask him multiple times and even help him as he’ll only do one or will refuse completely, etc. He had started the CBD oil on Wednesday night.  I really think it was starting to help and it probably still is helping.  However, he stopped taking abilify completely Friday night as we’ve been weaning him for the 3-4 weeks.

I am certainly praying this is a very short phase as honestly he’s very difficult unless he is sleeping.  This weekend there has been a whole lotta smashing and throwing food, taking a drink and then spitting it out, climbing on tables and counters, crying and then laughing, and head banging, especially when he doesn’t get his way. All of these behaviors have been elevated.

These pictures are two different walls in our house that took a beating from Sean this weekend.

I’ve repaired a few holes throughout that house that he made from when we first moved in and before he was treated for PANDAS.  Let’s just say that I am not very good at it. I’m thinking Kelly or Uncle Mike might need to help these walls out.

I thought I’d have great news to share all weekend because of how Friday was for him.  I think I was just a little naive to not realize that when he stopped the last 1/2 pill of abilify completely it would be tough. It’s okay.  I’ve been wanting him off this medicine for quite awhile.  Right now he’s not taking antibiotics, steroids, anti-psych meds, or anti-virals. I’m grateful he’s in a place that we could pull all those things back and infection wise he’s doing pretty well.  This is just a big little bump in the road.

Like my Mom always told us…this too shall pass! Hopefully that is sooner than later! I really don’t want this blog to be doom and gloom. However, I want it to be real and that means the good, the bad, the ugly and the amazing too! 🙂

Let’s talk about sleep…

One of the hardest aspects of life with Sean is the lack of sleep. I don’t really talk about it unless we are in a place of sleep issues.  I don’t believe in jinxing things, but I swear every single time someone asks me how he sleeps and I say like a champ…we have a rough night. I’m talking about it, so you know what that must mean…UGH!

We went through a terrible spell a few years ago.  He would have 2-3 nights of pretty much no sleep, or at least very little every week. Kelly was still living in Indiana and until Autumn moved here, it was pretty much just me to deal with it. I was obviously still teaching full time being a single parent and it was an extremely difficult time in life. I am very grateful that I no longer have to do this alone, but that post is for another day and another time.

Unfortunately, when the no or little sleep happens, he obviously cannot be left alone. We went through a period of about 4-6 months in which the only way I could get him to chill out a bit and allow his brain to calm down is if I took him for a car ride. Thankfully, we lived with my mom for most of that time and Liam could just stay home with her and sleep. I have been known to swing through the Tim Horton’s drive through at 2 am for a cup of coffee. I guess that’s better than buying something off of every single infomercial watched like my mom used to do when she couldn’t sleep! LOL When Kelly and I were looking for houses, I would take Sean through neighborhoods scoping out for sale signs when it was daybreak and I could see. Today, he wanted me to vacuum at 5am.  This is a very odd request and not like him at all.  We do have a new vacuum cleaner, so perhaps the sound is soothing or something.  At any rate, my main floor is all vacuumed by 5:30am. I guess I can feel good about being a little productive!  I didn’t even wake anyone else in the house up. Perhaps they all find it soothing too.

Sean won’t snuggle.  He won’t chill out on the couch and watch a movie or tv program.  He won’t play on his iPad.  If he’s up he usually wants to eat, go for a car ride, run around the house, jump off anything that he can, go in the backyard, or get into some sort of mischief that often includes soap–usually hand soap, but sometimes dish soap.  So, when you’re up with him, there’s usually no relaxation involved, sadly.   I can’t really complain because at least he lets me sit down.  You might be scratching your head with that one.  Remember that really bad stretch of sleep we had a few years ago before we started treating PANDAS and traveling down the biomedical route? Well, if we weren’t driving in the middle of the night, we were home.  When we were home, Sean refused to let me sit most of the time and he was RELENTLESS about it. I’m sure some people reading this are thinking…refused to let you sit? You’re the parent…why would you allow that?!  Well, let’s just say, it’s REALLY easy to question that or judge that when you are not living it and I’ll leave it at that.

We have come a very long way since then and I am happy to say that he usually sleeps like a champ and at least ten hours a day. Although every once in awhile he reminds me of how hard life was back then by either not falling asleep until the wee hours of the morning, or he waking up way too early–like today.

Sean had his last dosage of abilify on Thursday night. Friday was an amazing day at therapy.  One of the best reports I’ve received in a long time. I was hopeful that the CBD oil was really working some magic. I still have hope for it though because I think his behavior and night waking is because we decided to stop the last half pill of abilify now before I return to work next week.  I am praying he has this hard behavior out of his system before then.  The doctor said cutting abilify shouldn’t affect his sleep, but it has every time we’ve shortened the dosage as we’ve been weaning.  So I guess I shouldn’t be too surprised that we are sitting here in the middle of the night as the rest of the house and I’m pretty sure neighborhood–sleeps!

The older I am, the more difficult it is to bounce back from lack of sleep.  It’s a chelation weekend, so I’ve already been getting up through the last two nights and .  Today, Sean woke up at 3:45am for the day.  That wouldn’t have been so bad if I had been to bed before 1am. I taught four classes last night and then had to give him his chelation cream at midnight. It took me awhile to fall asleep and so it was a 1am bedtime for me. Fortunately, it’s the weekend and I will be able to nap today.  However, like I said, it definitely takes longer to bounce back as I get older.  All of the stuff I had planned to get done or do today will be affected because I’ll nap when I wasn’t planning to and then I will likely feel like junk much of the day.  This will also throw off Kelly’s plans for the day too. Man, I remember in my twenties when 3 hours of sleep would probably be just fine.  If not, I could nap a bit and bounce right back.  Not anymore! Maybe this is God’s way to help me prepare for when I am older and my own body won’t let me sleep anymore.  😉

There is a very good reason that sleep deprivation is a form of punishment.  Everything is harder when you are exhausted. EVERYTHING! I have found that when I have consistent decent sleep I feel like I can conquer the world…or something kinda like that.  However, when I’m desperate for sleep and feel exhausted for long stretches, I kind of want to throw in the towel more easily. Sometimes the littlest hurdle will feel like a mountain. I’m anticipating this to be a short phase related to the weaning of the medicine. I think/hope we’ll be just fine soon.  (Please God– tonight!)

Yesterday was a particularly hard day overall for Sean.  It was rainy which means no pool time.  That’s never good. I was school clothes shopping with Liam so Kelly was left to deal with Sean’s crankiness. He was pretty irritable throughout the day and actually kicked a hole in our drywall going up the stairs. Lovely. I wasn’t home when it happened, but apparently, he wasn’t even angry. It just came out of nowhere. I’d say it’s definitely related to weaning of abilify.  That dang abilify! That’s two holes in our drywall during the weaning of this medicine. We haven’t had holes made in walls since we started treating the PANDAS.  Maybe a few dents, but no holes. I find that depressing as I really try to keep a nice home, but he makes it not so easy sometimes. I’m sure I’ll post more about that in the future.

Thanks for “listening” to me. Let’s hope we are on the upswing of things!

It’s a Chelation Weekend…

Well, it’s a chelation weekend in the Lowhorn house.  What does that mean exactly?

We found out in the spring that Sean did indeed have high levels of mercury as well as elevated levels of lead. Kelly and I really were not surprised, however, it was good to confirm with a test.

In addition to about five prescription medications, Sean is on many supplements and also uses a chelation cream every other weekend. This is called a “round” and we can get about three rounds out of one $115 bottle of DMSA chelation cream container.

From Friday after therapy until Monday morning before he goes back to therapy Sean has chelation cream applied every three hours. We rotate the spot of where we put it for it to be absorbed into his skin. It has to be applied an hour after and an hour before any sort of medication, supplement or vitamin.  That’s the tricky part…oh and the middle of the night applications can be a little tricky too. 😉 He’s done about 7 or 8 rounds.  We are anticipating continuing for a good year or two.  Our biomedical doctor is hopeful that this will bring words back.  I sure hope so.

He’s on quite a biomedical protocol right now.  It’s pretty expensive and some months we struggle to swing it, but we find a way because we believe in it.  Dr. V was the first doctor that really gave us hope and looked into what was going on on the inside and didn’t just try to medicate him with an anti-psych med.  He was the first doctor to give us hope that we could truly help Sean.  Unfortunately, he is closing his practice in October. We now also see Maria and BioEnergy Medical Center in Ann Arbor.  She is amazing! Sean’s infection level is the best it has been since we first found out he had PANDAS.

We can’t stop now. In fact, we just started CBD oil with him and I think it’s going to be a really good addition to his protocol.

I hope to be able to share some positive and amazing posts soon. Please pray for our little guy!

Sean takes the following medications and supplements.

They are renewed every 4-6 weeks. 

Complex B capsule, B-12 spray, Zinc, Vitamin D3, Vitamin E, Magnesium, Vitamin C, Activated Charcoal, and Melatonin

 

 

Seanny’s Pit Crew…

Like any good family, the people in my family work together, especially when it comes to Sean. I honestly don’t know what I would do if I was still on this journey alone. As they say, it takes a village and much of our “village” lives in our house.

I’m going to paste a recent Facebook post I shared. It gives a little insight into what I’m talking about with our beloved pit crew.

So needless to say, Sean has had a rough day. He fell asleep for a little bit at therapy. Came home and didn’t want to eat or drink like he normally does. He asked to go in the pool, which I let him for about 15 minutes. He then started getting irritable. We came inside, changed and went for a car ride because he asked for one.

While we were driving he started throwing up in the back seat. I pulled into a parking lot and cleaned him up the best I could with napkins from my glovebox. I called Kelly and told him what happened and where we were at.

When we pulled up in the driveway, we were met by Kelly, Emma and Liam waiting for us. They had our designated family barf bowl, towels and the mini carpet cleaner ready to help. They were standing in the rain like a pit crew at the Indy 500 waiting for us. I think Sean just had his after therapy pill without enough food in his stomach. Fortunately, we didn’t have too much of a mess and the pit crew wasn’t necessary. However, I still appreciated the effort. 😊

I’m not going to lie. I’ve been feeling frustrated, weak and tired. But when I turned onto our street and saw them, I was reminded again about how awesome my family really is and how blessed I am.

We work together as a team. Everybody helps with Sean. Not everyone has this blessing.

Please pray for Sean to start feeling much better and pray for a very good night of sleep! We haven’t had an issue with seizures in a few years, but I’m a little nervous about the possibility so please pray for that too. Thank you!💙

The Journey Begins

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Admittedly, I am not a perfect writer. I’m certain that I have run-on sentences, errors in punctuation, and mediocre word choice.  However, I have a story to tell.  I have a journey to share. I am the mom to six “children” (two are actually adults).  Four of those kids are technically my stepchildren, but in my heart they are all just my kids.

My husband Kelly and I officially combined our families nearly five years ago. We have three daughters and three sons. Yep, just like the Brady Bunch.  Our youngest son, Sean is almost ten and is the inspiration behind this blog. Honestly, he’s the inspiration behind a lot in our family.

Sean has autism. Sean has PANDAS too.  But these two labels do not define him.  They make his life a struggle at times, but it’s not who he is.  So who is he then? Sean is such a beautiful boy.  He has a terrific sense of humor.  He has a pretty strong stubborn side to him too.  He has amazing eyes and a dimple which will melt your heart.  Sean is so smart. He’s not smart in the ways that kids are typically “tested” for intelligence, but that doesn’t mean he’s not intelligent.  If you really get to know Sean, he touches your heart in so many ways.  He’s my biggest challenge in life. He’s changed me more than anyone else I’ve ever met. There are days that his behavior makes me want to throw in the towel and just give up.  However, on most days he helps me to stay determined and keeps my fighting spirit alive. He is my heart and I am his voice. I’ve been fighting for him for nearly a decade and I’m not about to stop now–even on the hard days and nights.

Sean is severely affected by autism and PANDAS. So often autism is shown in the media as a movie or television character with just some quirky behavior.  Sean is not Rainman. Sean is not The Good Doctor. Sean doesn’t just have a few quirky character traits. Sean is non-verbal.  Sean has had seizures in the past (most likely from the PANDAS), but they are controlled with medicine. Sean gets really frustrated at times because he can’t communicate with words.  Trust me, he communicates in other ways! Sean is a little boy who works really hard at therapy every single day.  Sean is the youngest in our family (aka number six) and he is very loved.

As a special needs mom, I often feel pretty lonely on this journey. My husband is fantastic and is a true partner, but he’s not a mom, if that makes sense.  It’s not often that I meet another mom that I think can really relate to all of this and truly understand. I belong to multiple FB groups, but there is one in particular in which I can relate the most to and it’s because it’s a group of parents, mainly moms, who have kids similar to Sean. I can vent there. I can empathize.  I can really struggle there and they “get it” pretty well as their children have similar behaviors and struggles.

I want to document our journey, but I also want to connect with other moms who can relate. I want to give hope and encouragement to others. I want to share the truth about this journey.  I hope I’m able to do it all justice…

Good company in a journey makes the way seem shorter. — Izaak Walton