Painted Lark, Where are you?

My son in a tree PLOur son was recently diagnosed with PANDAS, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It’s a rare complication from a strep infection.

It usually comes on very suddenly and presents as mental illness. Some of the most common symptoms are sudden onset OCD (Obsessive Compulsive Disorder), severe Separation Anxiety, and motor tics. Our child has all of these and a host of other symptoms.

I thought something was off all through January. He had asked a lot of questions about germs for a week and was not eating his lunch at school and then one morning he washed his hands at breakfast at least 10 times. We went to the doctor that afternoon and were referred to therapists in our area. Things got worse all weekend and Sunday night I googled something like ‘sudden onset OCD in children’ and found PANDAS. By Wednesday, we had lab reports that showed a higher level of strep antibodies confirming my suspicions and were able to start antibiotics. On Friday we saw a specialist and he was officially diagnosed.

He has been on antibiotics and anti-inflammatory medicines for two and half weeks. He is better than he was that first week when we were doing the strep tests but not as much improved as I hoped or expected. My understanding is it may take a couple of months of the medication and some behavioral therapy for us to find our way back to normal.

I’ve tried to write about this a few times. I wasn’t sure how much I wanted to share or if it is fair to my son. I tend to figure my children can have their own online lives when they’re ready and don’t post much information or many pictures of them. And to be honest, I think some of the reason I struggled to decide whether to share what we are going through is the mental illness. Which is terrible, because I would not blame someone for having a mental illness. But I am aware of the stigma attached to that label.

Right now, our lives are chaos and mine is pretty much on hold. He’s very attached to me in particular and I’ve spent a lot of time in grade school helping him get through the day. And even when I can get a break, I haven’t been able to focus on anything else. It just doesn’t seem to matter.

I’m hoping that as we begin to accept what he’s going through and what our ‘new normal’ is for the next few weeks, I can start to focus on some other things and get back to painting and decorating as a distraction and outlet for myself.  But only time will tell. So, I’ll be back, but I’m not sure when.

Please feel free to ask me questions, I’ve learned a lot and found a number of resources. I think we were lucky to diagnose him quickly and to find doctors who were supportive as that is not the case for many families.

If you’d like to learn more on your own, these have been great resources for me:

http://www.nimh.nih.gov/health/publications/pandas/index.shtml

http://pandasnetwork.org/

Be well.

~Ali

11 Comments on Painted Lark, Where are you?

  1. April
    February 28, 2015 at 5:39 pm (2 years ago)

    Thank you for sharing, I myself suffer from depression as well and my daughter and my son. My son is also in the autistic spectrum and is very attached to me, so I understand the what that feels like. Hang in there and I hope he gets feeling better. For myself I ahev noticed that each year gets a little bit easier, I hope it does for you and your family too.

    Reply
    • Ali
      March 2, 2015 at 10:54 am (2 years ago)

      Hi April,
      Thank you so much for encouragement and sharing your story with me.
      Ali

      Reply
  2. G'ma
    February 28, 2015 at 9:18 pm (2 years ago)

    I’m so proud of you for writing this up and sharing with the folks who are reading your blog. The diagnosis is so new and the word really needs to get out to all parents whose children may be suffering from these symptoms for no apparent reason.

    Reply
    • Ali
      March 2, 2015 at 10:53 am (2 years ago)

      You are right! This shouldn’t be a surprise. We plan to share more once we get through this! And thanks for all your love and help.

      Reply
  3. Natalia Scrimgeour
    March 1, 2015 at 7:16 am (2 years ago)

    so sorry to hear it.I didn’t even know you can get these kind of complications. Let me know if you need any help.

    Reply
    • Ali
      March 2, 2015 at 10:51 am (2 years ago)

      Thanks, Natalia. Good to hear from you. Ali

      Reply
  4. Sarah
    March 1, 2015 at 9:03 am (2 years ago)

    I see you have referred to a NIH link. Have you tried to see if your son can get into an NIH protocol? Hang in there and all of our thoughts are with you and your family.

    Reply
    • Ali
      March 2, 2015 at 10:51 am (2 years ago)

      Hi Sarah, I have been in touch with NIMH, the National Institute of Mental Health and they have been very generous with their time and information. They aren’t doing anything PANDAS specific now and do not do treatment. So we are focusing on treatment but still in touch with them. They are such a wonderful resource!

      Reply
  5. Kristin
    March 2, 2015 at 7:40 am (2 years ago)

    Please look into HBOT therapy. A dear friend of mine did that for her daughter when she had inflammation in her brain. Look up Oxford HBOT. Just do not ever use a soft sided one. Treatment needs to happen in a medical facility administered by trained professionals.

    Sending you wishes for your sons healing.

    Reply
    • Ali
      March 2, 2015 at 10:48 am (2 years ago)

      Thank you, Kristin. A friend just had a double mastectomy and has been doing Hyperbaric Oxygen Therapy. To be honest, I didn’t know it was used for anything other than ‘the bends’ before that. I’ll look into it, getting inflammation under control is a large part of treating PANDAS.

      Reply
  6. Missy
    March 6, 2015 at 3:53 pm (2 years ago)

    It’s amazing of you to share this. I am so sorry that you are all going through this as it affects each and every one of you. But your son is extremely lucky that he has such amazing parents who will love and support him no matter what the future holds. That alone can help him face the world.

    Reply

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