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

 

 

If I’m honest…

If I’m honest…

I would admit that I’ve been in a bit of a funk regarding Sean’s autism/PANDAS journey.  I would admit that I haven’t been feeling too hopeful over the last couple of weeks either. I think I do a pretty good job staying positive, but lately it has been a struggle.

I think this is due to a few different factors.

The first being that I haven’t been going to church on a consistent basis since last fall.  I’m the kinda girl whose favorite day of the week is Sunday because of church.  However, last fall Sean started into a really bad flare of his PANDAS.  What that means is his infection level and inflammation were both elevated.  He was miserable at home and therapy.  Kelly and I were literally beside ourselves trying to make things better for him. It was a pretty helpless feeling and it went on for 3-4 months.  He was on a strong antibiotic and steroid burst at one point which made things even worse for him. (I’m going to make a different post to share what and who has been able to help him get on a much better path.) At any rate, church for Sean was definitely out of the question in the fall.  Leaving the house with him except out of necessity was pretty much the only thing on our agenda with Sean during those months. It hasn’t changed all that much since then in that respect.  He’s going through a pinching, spitting, and incessantly touching people’s faces phase which has made it difficult to too much outside of our house and therapy.  Thank goodness for our pool because that keeps him greatly entertained!

A couple of weeks ago, we received notice that our insurance company was only partially approving his ABA therapy.  I’m used to the insurance company not wanting to cover the expensive therapies or treatments.  The part that felt like a kick to the gut was the fact that they stated the reason for denying full coverage is because he’s not making enough progress.  According to the guidelines, he needs to meet 50% of his goals.  He met 67% in this time period, but apparently that isn’t enough for BCBS – MESSA. Sean is nearly 10, but is performing at the age of a 3 year old.  They expect the gap to be closer.  Gee, wouldn’t we all? However, I used to hear that Sean was like a 6 month old, so he has DEFINITELY made progress.  I can’t tell you how badly I wish it was more, but I am super proud of how hard he works and how far he has come.

For some reason, this really knocked me down. In addition, the same week we found out that Sean’s amazing neurologist was closing his practice. This is the doctor who diagnosed Sean with PANDAS.  This is the doctor who didn’t just try to cover up his symptoms with ADHD medicine or Zoloft.  This doctor wanted to dig deeper and did. He looks at the whole child. He is an integrative neurologist who takes insurance and is brilliant. He helped us so much and I was pretty upset to hear the news of the closing and that it was due to health issues for him. This knocked me into feeling even worse.

Sean is adorable.  Sean can be very lovable.  However, Sean can also be aggressive and difficult too.  He surely has a stubbornness about him that may or may not come from me. 😉  Either way, on good days and bad,  life with Sean is extremely exhausting as he can’t be left alone and we are constantly cleaning up after him. I am praying that with continued biomedical intervention and daily therapy, life will get easier for him and for us too.  His spitting obsession has been pretty disgusting, rivaled only with the poop smearing which he still does from time to time. Like I said in my first entry, I’m keeping this blog real.  If I share the real struggles it will make sharing the real triumphs that much sweeter.

So, needless to say,  I spent about ten days feeling pretty hopeless and sorry for myself and for Sean too. That’s the longest stretch for me– that I can remember anyway.  Even the most positive and faith filled person can feel weak at times. I’m working on leaning on my faith and staying hopeful.

Fortunately, this feeling has passed (I think) and I’m ready to be a Warrior Mom once again!

 

 

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

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