Faith ~ first signs of PANDAS

I am Mommy to an amazingly wonderful DD11 with PANDAS/PITAND, diagnosed in 4th grade in 2009 soon after her first major exacerbation in beginning of Jan 2009 after strep throat infection in December 2008 did not clear, but her doctor believes she has had this condition since about first grade… only 6 years of age.
She truly is my hero! 
♥♥♥

First day of middle school ~ 6th grade

In order to better understand the dramatic changes you’re about to read, I’ll provide a little history… Faith was always a very sensitive, loving, articulate and very bright child.  She had a strong tendency to focus her concern on others and their well-being.  She taught herself to subtract (unprompted) when she was three years of age.  She was in gifted classes for reading and math in kindergarten… speaking of which… her first day of school, I brought her to school & walked her to her classroom.  The second day of kindergarten, I drove her to school and she hopped out of the car and happily called “Bye Mommy!” to me and went right into the school without a look back. She made friends easily… never knew a stranger. Her kindergarten teacher told me in conference that Faith had the largest vocabulary in the class *by far*!  In her first performance with our church, she had a speaking part.  The children were not required to memorize the Scriptures assigned; however, she memorized hers.  She had a gift for public speaking… great projection and emphasis.

Fourth grade was a difficult year for Faith.  At the beginning of the school year, she was diagnosed with Reactive Hypoglycemia.  We already knew that she had Migraines and GERD.  She didn’t seem herself and we were noticing changes, but couldn’t put our finger on what was happening.  Even though I am a nurse, we’d never heard of PANDAS at that point.

Just before Christmas, she had a strep throat infection and took antibiotics, which she completed.  Apparently, it did not eradicate the strep infection.  I remember walking through a shopping area with her after Christmas, but before school was back in session.  She told me that she didn’t feel well… that her head and throat hurt and she was nauseated…
I would come to know those symptoms so well.

By the next evening, it was as if the child I had known for years as my sweet, loving, giving daughter, had suddenly vanished.  In her place was a child who while she still looked like Faith and truly was Faith… however, her personality had dramatically changed – yes, literally, overnight!

We saw OCD, ODD, ADD, tics, twitching/thrashing, rages, self-harm, hallucinations, severe separation anxiety, school refusal from a child who loved school, homework now took hours to complete, emotional lability, decline from A’s to F’s in schoolwork, especially math, which by now, she decided was “hard”, even though she taught herself to subtract when she was three years old and was in the gifted math and reading classes in kindergarten.  I will never forget one evening when we were helping her with her homework and part of the math problem involved 9-1.  Dan was working with her and getting nowhere.  I said, “Faith, you are nine years old.  How old were you one year ago?”  She just stared at me blankly.

Her separation anxiety was so extreme at times, that I literally had to pry her fingers off the toilet seat and dress her to get her to school.  Remember, this is a child who LOVES school, loves learning and seeing her friends.  Homework started taking hours to complete at night.  Her bedroom became a mess… she said she “couldn’t” throw away anything.

By early February, during a meeting with our Pediatrician in which she was still testing positive for strep throat, I brought in a list of her symptoms and quietly wrote “Rheumatoid Fever?” on a piece of paper for him, out of her view, he shook his head, said he didn’t think so and asked me to wait a moment, that he would be right back.  When he returned, he had some information for me and told me he thought she might have PANDAS (Pediatric Auto-immune Neuropsychiatric Disorder Associated with Streptococcus).  It was the first time we’d heard of it.

In the following months, I researched PANDAS and while it certainly listed her symptoms and the strep throat link was clearly present in her case, I remained deeply concerned that she may have a brain tumor.  The change was SO dramatic, SO extreme…. SO, TOTALLY, unlike her.  I asked for a brain scan.  The CT scan is another story that involved another scare and resulted in an MRI, but the end result is that the MRI showed no signs of a tumor.  We were left with PANDAS.  By this point, the antibiotics had eradicated her strep throat infection and she was back to herself, for the most part… still some OCD, ADD and a little ODD remained, but mostly, she was Faith again.

Throughout that spring, she was clearly susceptible to strep infections… and we saw an increase in symptoms with every strep infection… and a gradual resolve once the strep was eradicated.  By summer, we met with an ENT specialist who recommended she have a tonsillectomy and adenoidectomy, which he did in August 2009.  Finally, she cleared the strep!!  We observed a gradual improvement in symptoms over the next several months and naively thought we were done with PANDAS/PITAND…. until she caught strep again in spring 2010.  We were unable to eradicate it no matter what antibiotic (or combination) our pediatrician prescribed.  We watched her decline again.  By October, I requested that our Immunologist see her to check her immune levels.  He ordered labs and when the results arrived, he called to tell me they showed she is ‘significantly deficient’ in IgG and he felt it would be best for her to start Immune Globulin infusions – i.e. IVIG.  We could do these at the children’s hospital about an hour from our home or we could do SubQ infusions (under the skin) at home – we opted for the latter.  What I did not realize is there are different dosages of the IVIG for different situations.  She was initially on a dose for immune deficiency.  She became much worse and was too ill to attend school.  By around Christmas, we were calling 911 five times in two weeks for help as the episodes she was having were lasting several hours and occurring daily.  Christmas week, she was admitted to our children’s hospital.  A battery of tests were run to ensure we were not missing anything else that needed to be addressed.  Her LFT (liver function) was elevated as well as porphyrins – but only slightly… doctors believed it was due to med toxicity of some of the meds she was taking.  We discontinued those meds & changed her to others less likely to cause med toxicity.  When all other tests showed nothing, they ordered high dose IVIG.  She received the infusion over two days.  The next morning, she woke up and said she felt better than she had in a long time.  I asked her how long and she responded that she did not even remember.  We came home mid-day on Christmas Day.

We observed an immediate, dramatic decrease in her symptoms after that infusion.  About three weeks later, her symptoms starting increasing again.  (The half life of IVIG is 21-28 days.)  Our immunologist here ordered a boost of the lower dose and it helped short-term.  We saw a specialist out of state at about 5 weeks and she received another high dose IVIG infusion while there.  She repeated it four weeks later.  We are scheduled for her next eight weeks after that one.  We are observing gradual, sawtooth recovery that is typical of this condition.  She is better able to focus on and complete her schoolwork since early-mid March; however, she continues to require a lot of breaks and a lot of rest.

We trust that we are in God’s hands and that He will carry us through this and use it for good in some way.

19 Comments (+add yours?)

  1. mom2myhero
    Jan 29, 2011 @ 23:38:18

    We traveled to CT this past week to see Dr. Bouboulis, a well-respected Immunologist who specializes in treating children with PANDAS/PITAND.

    His impression is that she has actually had this condition at least since she was 5-6 years of age; however, it became severe when she was 9 years old.

    He plans to continue antibiotics for her as well as IVIG infusions. He indicated that children with CVID (Common Variable Immune Deficiency) like Faith has, require IVIG for an extended period of time in order to ‘turn off’ the gene that triggered the auto-immune response that is causing encephalitis in her basal ganglia.

    His office was able to obtain approval from our insurance company through August (they will re-submit at that time) for her to have one there at the infusion center before we returned home since she has been so ill and in crisis. (Some of you may recall that she had HD IVIG when hospitalized at Christmas.) She had another infusion 3 weeks after the one at Christmas, but it was a substantially lower dosage. This was her second HD infusion of IVIG. We will return in 4 weeks for the next.

    Her LFT and prophyrins remain elevated; her medical team is continuing to watch those as well as monitor her other medical conditions. Dr. B is also testing for co-existing infections.

    Reply

  2. Sonia
    Jan 30, 2011 @ 08:27:33

    Hello My Dear Friend,
    I’m so glad that you have finally gotten to see Dr. Bouboulis. It sounds like your on the right track. The blog was a great idea. I’ll continue to check it & will try to call again today.
    Give my love to Faith. You are all in my prayers.
    Love you,
    Sonia

    Reply

  3. mom2myhero
    Jan 30, 2011 @ 14:16:49

    Hey sweet lady,
    Yes, I think he will be able to help her… it will take time. He *hopes* (told us not to hold him to it as each case is different) to have her at 90% in one-two months, then he said we’ll work on 100% from there. I’m relieved to finally have a doc who is really knowledgeable about PANDAS & able to help her.
    Poor babe… another episode last night (thankfully, this one was only 10-15 mins for the worst of it… maybe an hour total), severe headache in the middle of the night & this morning and now she is vomiting. Dear Lord, what she endures with this & the strength & courage she has…. so thankful we are in His hands! ♥
    Much love to you too, my cherished friend. ♥

    Reply

  4. Mom
    Jan 30, 2011 @ 23:32:57

    It is so touching to learn of all you’ve been through. You are all my heroes for the grace and strength you’ve all shown. It’s so encouraging that Dr. Bouboulis has such positive comments. With his guidance and God’s grace, you will soon have your precious Faith back. May He guide you in this journey.
    Love, hugs, and blessings,
    Mom

    Reply

  5. Sonya
    Jan 31, 2011 @ 18:01:15

    Still praying for better days and the treatment to work. I think about you all everyday! Tell DD that we love her here at BMS and that we can’t wait for her to return!

    Reply

  6. Terrie
    Feb 01, 2011 @ 21:59:50

    Such a beautiful and touching site, Denise … what a wonderful tribute to your daughter. Prayers going up especially for Faith, but for you and DH, too, as you struggle to get your daughter on a path to wholeness and wellness again! God bless….

    Reply

  7. mom2myhero
    Feb 02, 2011 @ 12:50:59

    Thank you all; I’m still learning how to blog and I think I did not post this one correctly. I’ve been trying to post another the last day or so, but I can’t see it. Hmm…

    Ok, I’ve got it now! ;-p Please see my Welcome page for updated information. Links with updates for her progress can be found by checking the right side of any page or apparently, by clicking the title: “~♥~ Faith’s Updates ~♥~. To receive notifications of new posts, please subscribe at the top right of any page by entering your email and choosing instant, daily or weekly delivery for your notifications. Thanks for your patience! 😉

    Reply

  8. Brandi Smith
    Feb 03, 2011 @ 21:06:54

    I am so sorry to hear this about your daughter Denise. I will be praying for her, you, and your family. I know this has got to be tough, seeing your beautiful daughter in pain yet you don’t know what to do to ease it. Praying!! I will also spread this around in my nursing classes. Surprised I haven’t heard about this before. Much love.

    Brandi

    Reply

  9. mom2myhero
    Feb 03, 2011 @ 22:32:43

    Thanks Brandi. Please feel free to subscribe via email (top right corner of any page) for notifications when I post if you want to follow her case – and share with others in your program – instructors and students. You can choose instant, daily or weekly delivery.
    Thank you for the prayers; means so much to us!!! ♥

    Reply

  10. Faith Sharkey
    Feb 05, 2011 @ 22:09:14

    Honey what are great idea of keeping us updated on you and your family and especially Faith ❤ you are in out thoughts and prayers. You are all our heroes big hugs xoxox your extended family at {WAM} xoxo

    Reply

  11. lymeaway
    Apr 23, 2011 @ 13:35:02

    Hi Denise, I saw you linked something from my site, thank you. I’m so sorry to hear all that your daughter has been through at such a young age, my goodness. She sounds like a fighter though and you sound like an AMAZING Mom. I have never heard of this disease, thank you so much for helping me learn about PANDAS. Its funny..many of my Lyme friends do the IVIG. I’m so glad this seems to be helping your daughter’s condition. Will she have to get a piccline or is this something she can do at a doctors office still? I really wish you and her all the best. I hope that she can get back to feeling well again and enjoying the childhood she so rightly deserves. Many blessings to you both! Ali

    Reply

    • PANDAS - PITAND ~ Mom to My Hero
      Apr 26, 2011 @ 08:24:00

      Thank you Ali,
      Does the IVIG help Lyme patients you know who are having it? It’s ironic… I’ve been told that if there is lyme present to stop IVIG until the lyme is gone, then go back to it so I’m very interested in this.
      Blessings,
      Denise 🙂

      Reply

  12. lymeaway
    Jul 12, 2011 @ 19:00:28

    Denise- so sorry I am just getting back to this email if yours. It has been a very crazy couple of months. I was really starting to get sck with my lyme around April with pain increasing. At the same time I was taking hormone injections since we were pursuing pregnancy via gestational surrogate. We found out end of May that the transfer worked and were pregnant!! Were very excited, 11wks along now but we were having ultrasounds and doctor appointments every week with our Surrogate, who happens to be my Aunt as well. We are truly blessed but I am feeling a bit overwhelmed. Anyway to answer your question, I have not met many Lyme people who have done IVIG. One of my best friend’s has been doing hers for over a year now with no change, although I’m leary of her doctor. Almost two years sounds too ling to me. I would think like you mentioned stopping and starting again would be better. In the Burroscano Lyme Guidelines that’s what they suggest. Lyme is tricky because the active bacteria, the sphirocetes alter it’s shape and hide out in the body. They usually tell you to take a break with antibiotics, dont know why they would do IVIG treatments any differently with Lyme.

    Hope you and your daughter are doing well and enjoying the summer!

    ~Alison

    Reply

  13. Gloria
    Jan 17, 2013 @ 10:19:11

    I just stumbled upon your blog. My son was diagnosed with PANDAS in July 2010, he was 6 at the time. It was fate that I found Dr. Bouboulis after seeing him on the Today show one morning talking about “the girl who couldnt stop sneezing”. I thought some of the symptoms sounded familiar and I googled him and was delighted to find that his office is only an hour away from home! We got an appointment a month later. Flash forward 2 years, my son has undergone 16 IVIG infusions and is 90-95% better! At one point he was walking sideways! Right now he only has a minor tic. (knock on wood!) I just want you to know I feel your pain and frustration and I wish you and your daughter all the best on your journey towards wellness 🙂
    Gloria

    Reply

  14. Vicky Michos
    Jan 26, 2013 @ 06:13:35

    Does anyone know if doing monthly ivig infusions is advisable for my 14yr old twins who have very severe and debilitating PANDAS symptoms? Does anyone know if Dr Bouboulis is OK with this since I am in Australia and too far to travel to see him?

    Reply

    • PANDAS - PITAND ~ Mom to My Hero
      Jan 26, 2013 @ 09:59:04

      Hi Vicky,
      I’m sorry; but, I can’t answer that question. It is a tough journey, indeed! If you are unable to secure medical care in Australia, you might try calling any of the PANS specialists to inquire if they would do a phone consult with you; this is really a question for a physician who is familiar with your children’s cases.
      Best wishes!
      Denise

      Reply

  15. mamatufour
    Mar 07, 2013 @ 00:58:22

    Hi! We are living a similar life….my dd11 has PANDAS and Lyme and several other things. I will be reading through your blog. So strange….this often seems to affect the same kinds of kids….my dd was one of the most thoughtful, bright children that I had known. Her IQ test showed her to be way up there, she was reading before she was three (without me “teaching” her), she put things together in thoughtful ways, had a long attention span. That is gone now, and I am very heavily considering homeschooling her. She cannot keep up in her very small class, and getting clothes on, getting out of the house, getting much of anything done is extremely difficult. Our story is at http://www.findingmylittlegirllost.blogspot.com under our story.

    Reply

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