Here I Go Again With the Ugly… Part 1 — Piers

I’m procrastinating and avoiding. I’m showing up here because I have to process some heavy things, and blogging is available and cheap.

Life has been stressful lately… for multiple reasons. I’ll start with the first one:

We began the new year with lots of doctor visits for Piers. Nothing is conclusive yet.

The short version is that he’s being treated for PANDAS (sometimes referred to as PANS) — an acute neurological condition that typically shows up in children between ages 3-14. The diagnosis was made based on my description of symptoms and abnormal bloodwork — specifically Dnas and Aso levels. My understanding (forgive me for not linking — I’ll try to go back and do so), is that his body is exhibiting an autoimmune response to strep. He’s about to start the THIRD round of antibiotics, and I am ready to seek a second opinion and explore other possibilities. Every description of PANDAS that I’ve read emphasizes the acute part of the onset of symptoms — the anxiety and OCD comes on suddenly in an otherwise healthy kid. As the condition progresses, children may begin having tics and more severe neurological problems.

Piers was having anxiety and still is though it has improved, but I wouldn’t say that it’s OCD-like or acute, though the severity of the anxiety increased during the holidays (sometime between the first of November and the end of December.) He doesn’t have tics, but he does this bizarre twisty thing with his mouth and tongue sometimes, and I noticed that it was worse after school parties and if he ate crappy candy, particularly with food dye. Red #40 is our worst nightmare. Even small amounts result in rage and insomnia. We learned this after a horrid reaction when he was two. I can’t even go there tonight… it was that bad.

I’ve talked extensively with the pediatrician, who I like and trust…but after our last appointment, I’m not convinced that PANDAS is an accurate diagnosis if we’re strictly basing it on symptoms. Originally he said that the bloodwork confirmed it, but then he changed that and said PANDAS is a clinical diagnosis, and everything I’ve read confirms that — fine and good, but I’m at the pediatrician first to rule out certain things. I could have skipped him altogether and gone to a psychologist in town that I know I and trust. My background is psychology and social work with a side of nutrition. I am not at all knocking clinical diagnoses, but I’m not comfortable with ongoing antibiotics without a little more to go on.

My pediatrician keeps emphasizing the necessity of staying the course with the antibiotic, but at our last appointment I asked when they were doing blood work again and he said he had no plans to do so –he’d base it on symptoms. That didn’t sit well with me, especially since his PANDAS symptoms are relatively mild and always have been and could be the result of MANY things — my fear is that if it IS¬†PANDAS and we deviate from the treatment, his symptoms might get worse. I have a friend whose son has severe tics and they can’t determine why, though now after the info I’ve received from my doctor, they have a starting point.

Here’s the other piece to this PANDAS puzzle. In addition to the antibiotic, we’ve removed gluten and most casein (dairy) from his diet. The pediatrician was insistent that we eliminate inflammatory foods and this was where he recommended we start. This has been beyond difficult and I’ll get into more of that later, but I’m typing this all out for my own benefit (to remember) as well as sharing the story. But I have to say that a month into the elimination diet, I’ve seen a lot of positive behavioral changes.

My issue with the non-stop antibiotic is Piers’ previous sensitivity to antibiotics, plus with everything I’ve learned about gut health over the years, I like to limit exposure and only use if absolutely necessary. There’s also the building of resistance concern. I know several friends who’ve dealt with antibiotic resistant infections in their kids. It’s stressful.

But…I have to remind myself that the reason we switched to this pediatrician in the first place was our previous doctor’s mishandling and incorrect treatment of Piers’ recurring ear infections (another story for another day). Our current pediatrician is NOT one to overprescribe and because of that I’m inclined to trust him when he says antibiotics are necessary.

This got way long. Bear with me… My SIL is convinced that I need to have him tested for chronic Lyme disease. She has it and all three of her children have it. AND, I had a bizarre case of mono last year and have suspected that I might have Lyme. I mentioned all of this to the doctor at our last appointment and he said that he hasn’t seen enough “science to back up the hype” — thus far, but he’s doing loads of research on the condition because he’s asked about Lyme multiple times a day. He has a conference this month and said we’d reevaluate at our next followup. I called the nurse today to discuss symptoms since we’re supposed to be moving on to a different antibiotic — still waiting for a call back.

My biggest concern is that we’re doing all this investigating and ruling out various physiological things, food sensitivities, etc., but I know my family history. We all have anxiety, depression, bipolar, addiction, ADHD, on and on and on. I can get behind that mental illness is also physiological, but I don’t want to keep taking stabs at treatments that might not work while Piers’ anxiety is progressing, not to mention subjecting him to all these flipping antibiotics. I still think he has ADHD. I think he’s managing for the moment and I’m not jumping to medicate him, but this anxiety concerns me. It’s also like reliving my childhood. I think my anxiety was a byproduct of undiagnosed ADHD. All of this is a big reason I’m job hunting and exploring other insurance options. I delegated our last insurance search to Gil and wound up with a company that no one in our area accepts and NO mental health coverage. HAS GIL MET ME?!

You can probably guess that another stressor is my marriage. That will be the next post. Regarding Piers, Gil is yielding to me on all of it to the point of neglect. Gil works these days and I manage everything else. Fine, but the problems arise when I make decisions and then he questions me. He was invited to this party in the beginning and elected to not get involved. There’s more, but I have to stop. Thanks for listening…

Any knowledge, experience with PANDAS? Lyme? I’m researching all of it and would welcome links or experiences.

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15 thoughts on “Here I Go Again With the Ugly… Part 1 — Piers

  1. Pingback: Balancing Self-Care With Other-Care — Part 1 | Grief Happens

    • Thank you! It’s better and Piers is doing well. There are still a lot of unknowns, though, and I’ve been kind of on edge about figuring out the best way to move forward and how to treat long term. Every doctor has a different plan/opinion, and it seems that every parent who’s dealt with this has a different opinion on how to treat. Sigh… It will be okay. Thank you so much for your support!

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  2. I am so sorry to hear you are going through this. It sounds like you are doing exactly what you should be; research, questioning your doctor, and following what is being advised without blindly following that advice. Physical illness, especially long term illness impacts the whole person as well as family, in my opinion. I hope you have a good support system in place as you walk through this. People that will encourage and help you; not lecture or criticize you. I am glad to see that you are hopeful. Take care!

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    • Thank you. I feel like I’m doing what I need, but the support is spotty. People are quick to share opinions without knowing all the exacts of my situation — fine, to a degree, but I’m trying my best to be thorough and then hearing different opinions or even experiences is sometimes hard. I walk away and question myself. Overall, things are better, so I’m grateful for that. You are so right about the importance of finding people who are encouraging rather than those who criticize and lecture. Thanks again!

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  3. This sounds so stressful! I really hope you & the pediatrician can get to the bottom of this sooner rather than later. I think the stress of not knowing exactly what it is is one of the worst feelings. Please keep us posted, and I’ll be thinking of you and Piers.

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    • Thanks! It is stressful. And as much as I like my pediatrician, naturally he doesn’t see this as pressing as I do as a parent. Piers is doing great. Eliminating gluten has been huge. I didn’t want to believe it, but he’s even starting to notice that he feels better — which, to me, is huge. I just don’t feel like I have enough info and am having to research so much on my own, so yes, LOTS of unknowns. I’m fine with researching, but there is SO much conflicting info that it’s stressing me out. Anyway, he’s better, but I’m a bit of an anxious wreck. Hoping to post more on this later. Thanks for the support.

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  4. This can be so overwhelming and leave you feeling like you can’t do anything right. I’ve been there…several times. All I can say is that you’re the mom…follow your mom gut. It won’t let you down.

    I can’t count the number of doctors I’ve argued with, amount of research I’ve done and facilities I’ve interviewed for my kids and their health and well-being. And because I did it ALL, I would lose my shit when my husband questioned me about any of it. Of course eventually I’d calmed down and speak like a normal person but, in the moment, Mama Bear did not want to be doubted!

    Anyway – I’m praying here so don’t lose hope – you’ll get there.

    Sherry

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    • Thank you so much for sharing that. I am feeling a bit unstable lately and am having to push through for my kid. Some days I’m like — CAN’T SOMETHING BE EASY?!! I just need someone to tell me what to do but that’s not going to happen. It’s hard but I’ll get through it. Thanks again for the prayers and support. I appreciate it more than you know!!!!

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    • Thank you! I feel better today. All I can do is keep putting one foot in front of the other. I had a moment yesterday, but writing about it was extremely helpful. Thanks again for the kind words. Hope things about going well with you.

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