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Thursday, April 20, 2017

Watching My Children Bloom



We’ve had some interesting changes around here lately. I took Ben and Jonah to see a “Lyme Literate Doctor” a few weeks ago. He agreed with me that there is much more going on with all four kiddos than what meet the eye. We spent several hours talking, discussing, and brainstorming about what is going on with the kids and how to help them. I LOVE this doctor. Every single thing that came out of his mouth resonated with me. He talked about all kinds of things I’ve learned about. I kept thinking, “Thank goodness I’ve done as much research as I have, because this is completely overwhelming to me even knowing all that I do! I can’t imagine having this be my first experience with this kind of doctor!” I guess it is a blessing that I have been on this path for so long. It felt like a miracle to finally find a doctor who wants to walk with me on this path!

This doctor, I’m tellin’ ya. So brilliant. He said the boys have yeast overgrowth- a common problem when you have an immune system in overdrive and things going haywire in your body. You have good bacteria and bad bacteria in your gut, and your immune system functions primarily in your gut. When you have too much bad bacteria, this can lead to too much yeast in your body. Too much yeast can cause a zillion problems. Things from brain fog to Irritable Bowel Syndrome to trouble with your bladder. Hello, have you met my four children?? They are the poster kids for yeast overgrowth!! The doctor had me look at the boys’ tongues—they had a white coating on their tongues from the yeast growing out of their intestines up their esophagus’ and into their mouths. Ew! So the first thing the doctor did was to begin to address this yeast issue.

The doctor said the kids definitely have symptoms of tick-borne illnesses. This was passed to them while I was pregnant with them. My tick-borne illnesses most likely caused my babies to be born prematurely. Poor little things. That is something that positively eats me up inside. I have to redirect my thoughts each time this pops in my head, and purposely think about all the things we’re doing to help the kids regain health and happiness. That’s all we can do now. The doctor said he has about 15 families in his practice who are like us- they all have Lyme and co-infections. Pretty interesting. The doctor has found that many children who are diagnosed with things like Autism, tic disorders like Tourette Syndrome, ADHD, PANDAS, and other neurological disorders often have Lyme and yeast overgrowth as well. When families address the underlying problems of yeast and tick-borne illnesses, most often other symptoms improve as well. Fascinating.

When the doctor examined the boys, he asked me why they had red marks on their arms and lower backs. I said I always thought they were stretch marks from being on a medication for that caused them to gain a lot of weight. The doctor told us those are not stretch marks. They are a rash from Bartonella- another tick-borne illness. I. Was. Floored. I could not BELIEVE it. I Googled this rash when we got home, and sure enough, it could be pictures of the boys on those sites about Bartonella. I was shocked. So crazy. To see physical proof of this illness on your child's skin...insane.

The doctor started the kids on a protocol to slowly address their yeast and tick-borne illnesses. The kids have to be gluten free, soy free and dairy free (this one is proving to be very tough, but we just limit what we can and do our best). They have to limit their carbohydrate intake because carbs feed yeast. The treatment is extremely slow and gradual, because this healing process takes time. You can’t just pop some pills for two weeks and feel completely better. It’s going to be a marathon, not a sprint. I have a calendar for each child with their treatment plan. Each child may respond differently to the treatment, so I have to take daily notes or I’ll forget who is doing what. It’s a little intense and complicated, but I’ve been organizing meds for all of us for so many years, it just takes a little adjustment to add in this new protocol. The whole family is also on a bunch of supplements that the doctor recommended based on testing he did with the kids.

Ben and Jonah did further testing- 24 tubes of blood, saliva and urine tests. We will have final results in a couple months. The boys were NOT fans of this testing. For one thing, they can’t spit. I don’t know what it is, maybe it’s the fact that they’re tongue-tied, so they can’t get their tongue to cooperate with what it needs to do to spit. They were supposed to spit in a tube four times during one day. The saliva had to reach a certain line on the tube, and the tubes were little. We’ve done other spit tests and the tubes were huge, but these were little. Still, you wouldn’t beLIEVE the drama we went through that day about those darn spit tubes. OMG. You’d think I was forcing them to cough up and donate a kidney. The tears, the anger, the fussing…my lord. Ultimately, they couldn’t fill the tubes with enough saliva to reach the lines, so I’m not sure if we’ll be able to get accurate results from that test or not. I wrote a little sticky note to the lab, explaining that due to their special needs, the boys did the best they could with the spitting and that was all we could provide. Drama, people, drama.

I was so proud of the boys though, because they have been such troopers through all of this. The doctor alone is almost 2 hours away. So to miss school, drive there, spend about 5 hours with the doctor and nurses, drive the 2 hours home, do all these tests, take all these pills…it’s a lot for anyone, let alone a kid. I keep explaining everything to them so they understand why we’re doing what we’re doing. And they’re so on board with it all! It makes sense to them, they agree with the treatment plan, and best best best of all, they’re already seeing results. It’s going to blow your mind, but it’s really happening.

I’m not sure if you understand what a HUGE, GINORMOUS deal this is for me. I have been searching for help and answers for 14 years for my boys. Every single path I’ve gone down with them has led to something valuable, but not the missing piece of the puzzle. More times than I can count, I have been literally laughed at by doctors. They literally chuckle in my face and tell me my hypothesis is nuts. How is that a healing, compassionate way to treat a child’s mother? I've realized over and over again that how a person reacts to me is more about them and less about me. People ask me why those doctors aren’t in my life anymore, and that’s why. If you can’t at least respect me enough to explore my questions with me, see ya. I have no time, patience or energy for you anymore. I’m not willing to let my children suffer any longer because society thinks I’m nuts because I ask tough questions and think outside the box. Honestly, I’ve never fit into that box, so I’ve learned to embrace that aspect of myself. If others can’t, that’s ok. But then I can’t spend any more energy on those people.

So here’s the deal. We’ve gone totally gluten free. The kids are on board. Alex is doing it too. We’re being triumphant over gluten!! Woohoo! I told the Lyme doctor that I’ve had the family go gluten free twice before, and we have never seen a difference in the kids’ behavior or symptoms. After hearing the doctor explain why, this is how I told Alex about it: a body is like a bicycle wheel. It has spokes. Each spoke represents an aspect of your health. So one spoke is how well you sleep. One spoke is your diet. One is your immune system, etc. All these spokes contribute to the overall well-being of the wheel. Say the spokes on the wheel are all bent and broken. The wheel isn’t going to work efficiently. If you have the genes for gluten sensitivity, this is one spoke that's bent out of shape. If you have Lyme, that’s another spoke that's busted. If you don’t sleep well, that spoke is bent too. Your “wheel” (your body) is going to be all wobbly and won’t function at an optimal level. Say you stop eating gluten, but that’s the only spoke you fix on your dysfunctional wheel. The whole wheel isn’t going to work any better, because it still struggles with not sleeping well, having inattention and hyperactivity, not having enough of the right neurotransmitters to handle life’s stressors efficiently, etc. In the past, we tried to fix one aspect of the big broken wheel by going gluten free, but there are so many other things wrong with the kids’ bodies that just fixing one issue didn’t make a noticeable difference. So now we’re fixing the WHOLE wheel at once. We’re taking a multi-step, multi-faceted approach to healing our bodies.

The only one who is grumpy about this diet change is Aidan. He’s in a bit of a snit about it. He and Ella are super picky about food, so it’s going to take some time before we find things that fit into our diet that they enjoy eating. But we’re committed to it. No if’s, and’s or but’s about it. Not even a “How about..” This is Aidan’s favorite bargaining tool: “Can we have a ‘how about’? How about I eat a huge gluten-filled bun with my hamburger?” Um, no sir. Now we have lettuce wraps with our burgers, because gluten free buns are usually terrible. Surprisingly, some things that I thought would be a big fight are pretty easy. On Mondays, we have a crazy after school schedule, and sometimes Ella and Aidan get to eat Portillo’s for dinner. Last week, I’d prepped them- no gluten! So we have to do lettuce wraps if you want a burger. It took a little convincing, but Aidan ended up loving his lettuce-wrapped burger. And Ella devoured her lettuce-wrapped hot dog. (Gross, if you ask me, but whatever.)

So here’s the best part. Especially for Jonah, there have been crazy improvements in his health. The second day after starting the treatment for yeast, Jonah started changing. He became calmer. He became happier. His brain seems clearer. His bladder issues have gotten better. Constipation took a while to improve, but it’s on the mend also. He is seriously like a different kid. TWICE in the past month, he has said these words to me: “I’m happy.” Ok, people, I haven’t heard my boy say that in probably nine years. Nine years. In the past month, he’s said it twice. This is insanely crazily huge for our family. Can you imagine? Suddenly coming out of a fog, feeling happy once in a while, feeling calmer in your own skin, feeling…just ok with life more often? After an eternity of struggle. It’s blowing my mind to witness this change.

Jonah even went through a self-induced makeover. For many months, he has let his hair grow long. He always looks adorable, but a person’s hair says a lot about what’s going on inside of them emotionally. Jonah’s poor hair looked a little sad. It was all heavy and covered his eyes and ears. Like he wanted to hide a bit. I always try to encourage the kids to be who they want to be, look the way they want to look. But I’ll be honest, Jonah’s hair bugged me.


A week after we started our treatment protocol, Jonah started talking about a haircut. He found a picture of a cut he liked, and I took him to get it done. I thought he’d change his mind, but I didn’t push. That boy walked out of the hair salon a new man. He has this haircut now that is so CUTE! It’s short and styled and off his face. He looks like a model. I know I’m completely biased, but seriously, model material here. Then he asked to buy some new clothes! Then he wanted a new, cool jacket! THEN, I know this will embarrass him but that’s my job as his Mama, he needed a new style of UNDERWEAR!!! Come on! Can you believe this??

For so long, he’s been shlumping through life. Unhappy, uncomfortable, overwhelmed, stressed out. We start treatment, change his diet, get him on supplements, and boom! He’s a new person, inside and out. Not once since we started treatment has he laid on the floor, screaming and crying for more than an hour because he didn’t know how to calm down. I know I cannot express to you the enormity of what this means to me, but let me tell you, this is life- changing stuff. And I have a front row seat to watch this incredible boy blossom. You cannot tell me this treatment didn’t have anything to do with his blooming. Even Jonah’s teachers have noticed changes in him! His math teachers told me yesterday she can’t believe the difference in him—he hardly ever visits the bathroom during class now, and when he does he isn’t gone nearly as long as he used to be. His choir teacher keeps commenting on Jonah’s haircut in class, which makes Jonah feel so special and proud. The teacher said last week, “So class, remember how when we started this year, you were all so shy and quiet? And then Jonah went and got a HAIRCUT and looks like a JUNIOR!” And, “Remember when Jonah first joined our choir this year? He just sat in the corner and kept to himself and was so quiet…and now listen to him!! He SINGS!! You should all be singing like JONAH!” Ben and Jonah are so supported at school. It’s an incredible shift for them.

Now, don’t get me wrong, we still have challenges. Many, many challenges. But who cares? When you add up the incredible positive changes that are happening for this boy, I don't care how many daily challenges we face as long as we’re getting some good in there too.

The other kids are still struggling a bit more than Jonah. Mood issues, anger, irritability…all still hanging around. But the Lyme doctor said there will be times when symptoms flare and get worse. This is expected. We just have to hang in there, find ways to get through the tough spots, and keep loving on those kiddos as best we can. I keep communicating with the kids and tuning in to them, asking them how they feel and trying to support them where I can. They need to be active participants in this healing process. It’s hard to get Aidan and Ella to take the supplement drops they need to take every day. It’s difficult to get Ella to do her two nose sprays every day that her ENT says she MUST do to try to avoid surgery on her ears. It was a challenge to get all four kids through a round of antibiotics for the strep and sinus and ear infections they just got over. It’s tough. We have ongoing, daily drama about all of these things. Along with all the normal drama about homework and showers and bedtimes…but if there is one single ounce of hope that inside those little bodies there is some healing going on, it’s all worth it. I’ll try to stay patient every day and muscle through the drama if I know that my children will be healthier and happier someday because of what we’re doing right now.

Just listen to your Mama Hearts. Never give up if you feel your questions haven’t been adequately answered. Never give in to people who laugh at you and say you’re crazy because you dare question the status quo. Boxes were made to be busted out of. Don’t let anyone try to stuff you back in the box that they feel most comfortable with you in. If you think you need to keep searching for answers, about anything- your own health, your children’s health, anything- just keep digging. You’ll find answers if you keep looking. And then you’ll get to wake up to a new day and watch your children bloom before your very eyes. And you’ll know every excruciating struggle you’ve been through has brought you to this point, and it was all worth it. Because your children are starting to bloom.

4 comments:

Connie Sletto said...

I would say that we have the most amazing daughter, son-in-law and these four grandchildren that there is. No one could be prouder of "strong woman" than her parents. Love to the family. Papu and Nana

Anonymous said...

I am so happy for you and your family!! We are also on a Lyme & co-infections journey. It is sooo wonderful to finally find answers to some of these health challenges.

Carrie Newsom said...

Thank you for your constant love and support!! Xoxo

Carrie Newsom said...

It is so great to have some answers, isn't it? I wish your family good health!!