ua mama bear – Gluten Free – with PANDAS

Family Health and Happiness Beating PANDAS and Being Gluten-Free

Our Story May 1, 2012

We are sitting in a room at the doctor’s office, waiting for her to come talk to us about the boys’ tests results. As she walks in she says “Yeah! there is something wrong! You have PANDAS!” I was very confused – she was excited to see there was something wrong with my children?? I had never heard of this disease before, after leaving the doctor’s office I went home and immediately started researching this and could not believe how many children out there had similar symptoms and parents were going through similar situations.

It all began about November 2011 when it became intense, before then for about a year our middle son Ben started to develop some OCD tendencies, but it did not affect our day and he did not meltdown if he could not complete his routine. He would just start the routine over again. But, by October 2011 we were noticing drastic changes in him. He was becoming more anxious, irritable, burst out crying, drastic mood changes and he told us that he was feeling depressed. We immediately started CBT (cognitive behavioral therapy) and it seemed to be helping. By December 2011 he seemed to back slide, his depression was becoming worse, we went to the pediatrician to start an SSRI (anti-depressant). During this same time my oldest son, Erik came down with some horrible flu which then turned into pneumonia, he is sick for almost the whole month of December.

Then we hit rock bottom in January 2012, his depression was even worse and he had now made a suicidal plan. My first inclination that something was wrong was when one night he said “I don’t feel like doing my homework” it felt like someone had punched me in the stomach when I heard those words. This is a child that will complete homework ahead of time! The next day he said “Can I just stay home today?” this was my next red flag, he always wants to go to school, even with fever and he can’t function. That day we had a therapy appointment already scheduled and the therapist came out of the room from talking to Ben and said “I am really concerned for him, he says he has made a suicidal plan and does not think he can stick to his safety plan{Description of  Ben’s safety plan was that when he is having thoughts of hurting himself, he will wait 48 hours before doing so and in those 48 hours he will talk to an adult that he has listed on his safety plan}. I think to keep him safe you need to go to the ER and admit him to Harding Hospital.” I was devastated I could not believe what was happening and how my child was feeling. We spent almost 24 hours in the ER before he was admitted. Worse day of my life having to leave my deeply depressed son in a hospital with complete strangers, but I felt at a loss as what to do for him. The 12 day experience at Harding for both my son and myself were horrible, to say the least. He had an adverse reaction to a medication and I pointed it out to the nursing staff and doctor. The doctor didn’t think it was possible to have an adverse reaction to Celexa and thought he was possibly taking someone else’s medication or someone brought Lithium in from the outside and he was taking that and he was having a Lithium overdose. That is not real comforting  to hear from a doctor, when you have limited visitation hours! Thankfully he did not have Lithium toxicity and it was really an adverse reaction to the Celexa! During this time his anxiety is increasing. Finally he is released and he seems a little better, he says he feels better and he is so happy to be out of there.

During this whole 12 days my oldest son, Erik starts throwing up and says his whole body feels horrible. I take him to the doctor numerous times, with no answers, the doctor concludes he must be stressed because of everything his brother is going through. For the next month he is throwing up almost daily, some days are better than others and there seems to be no correlation between different types of foods  or even when he eats and him getting sick. As he continues to get sick frequently, his anxiety increases – he does not want to leave us, he stubs his toe on the corner of the ottoman and feels he needs to be rushed to the ER “it might be broken”, he jams his finger and he worries that something is terribly wrong with it and he needs to be taken to Urgent Care to have an x-ray done. I feel like everything is falling apart around me.

During this time a friend suggest I take the boys to an Integrative Pediatrician to get their vitamin/mineral levels checked and the nurse calls to let us know that Ben has high levels of gluten and we should start a gluten-free diet immediately even though we are not going to see her for another two weeks.

Well, we thought we had hit rock bottom in January, somehow by the end of February/beginning of March 2012 we hit a little harder. For awhile in the beginning of February Ben seemed to be doing a little better, he was back to school, seemed to be coping and said he could stick to his safety plan. Then one day he woke up and said he felt bad again and he didn’t know why, and the feeling just kept getting worse. During the last month and a half we were also seeing a psychiatrist and she put him on Zoloft, then Lithium and at our last appt with her (beg. of March 2012) she put him on Lamictal, and told us that we should take him out of school, probably for the rest of the year and we should consider other schooling options for next year, because he was having suicidal thoughts at school. She said on this medicine it will take awhile but he should feel better by summer – that was still 4 months away that was a long time to feel so horrible! During this time he was also telling us and his therapist that he was having suicidal thoughts at home and was coming up with different plans. The therapist suggested that he probably go back to Harding and we said no way! We took him out of school and he was either with me or my husband 24/7. All medicines were locked up, he was sleeping with me at night and there was an alarm on the door so I would know if he got up. Because he told his therapist that he knew he could just sneak out of bed, take some pills and run away. But all the time going through this he would say, “I don’t know why I feel like this, I want to feel better, what is wrong with me!”

Then we met with the doctor who told us they have PANDAS and high gluten – immediately they started on antibiotics and within days I could see a difference in the way they were feeling! I could not believe what I was seeing, my children were getting better by being on antibiotics! Now it is May 2012 and my oldest Erik, has seemed to almost fully recover, but Ben, who had the more severe symptoms, has good days and not so good days. We are all gluten-free and also trying dairy-free to help with inflammation. Also to help with the “not so good days” he is doing restorative yoga poses, using essential oils and taking supplements such as Enhansa, Omega-3, Glutamine and a Multi-vitamin with B-12. We are still on the road to recovery, but I can not believe that there are some in the medical profession that do not believe that PANDAS is real. I hope that by telling my story it will help and bring together other families that are in similar situations, to get the word out that this is real and how it affects the whole family.

Update 6 months later: November 2012 – here is an update from when I wrote this in May of 2012: Gluten-free way of living is helping tremendously, we are finding out that our middle son is very sensitive to cross contamination – so we try to eat a Paleo diet (fruits, veg, meats and nuts) when he has  cross contamination reaction is exhibits some of his PANDAS symptoms – irritability, mood swings, headaches. Our middle son has two recurrences of symptoms and our oldest only one – all times we have been able to put them on a round of antibiotics and symptoms thankfully go away. I am trying to figure out how I can keep their immune system built up so these symptoms don’t recur – we have added to our supplement list: aloe vera water, Inner Defense (by Young Living) and daily essential oils – I am hopeful that these will help keep them healthy and not have any more recurrences or less chance of symptoms recurring.

 

10 Responses to “Our Story”

  1. Vicki Says:

    Sharla,

    I stumbled upon this from your FB page. Wow… I feel such empathy for what you are going through. How brave to share your story with others. I do believe that PANDAS is absolutely real and feel that your story will help so many people. Not an easy story to tell for sure. Hugs!

    Vicki

  2. I can’t come to the support group tomorrow night, but I would like to stay in contact with the group. My son has PANDAS and his diagnosis was a relief after living with these symptoms for years. It finally gave a name to what we have been struggling with. Thank you for starting this.

  3. Cara Says:

    Thanks for sharing your story and for setting up the support group. I’ve been connecting with people on the Pandas OH fb page but it will be nice to talk in person.

  4. Michele Says:

    Hi! I run the NE Ohio Pandas support group! We have dealt with pandas for 9 years. I would love to talk. Michele_223@hotmail.com

  5. Thank you SO much for the info! I’m going to try and make the next meeting.
    Tamar

  6. pandasmom Says:

    Hi there,
    I see that you have commented on my blog as well. Do you live in Ohio? DH and I are from Ohio.

  7. Brenda Pritchard Says:

    OMGosh! Those poor boys! And what you as parents must have been through had to be horrible. I’ve been reading about this “inflammation” in the stomach. Its terrible. I hope they continue to do well and feel better.
    Brenda Pritchard ❤


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