Living with PANDAS…not the cute and fuzzy kind.

It has taken me a while to compose this post.  Not because it isn’t a topic at the forefront of my mind quite frequently, but more because I have only in recent weeks began to make sense of it all.  So bear with me…this is a long one!

 May and June were extremely difficult months in our household.  Nate was not himself to say the least.  I can almost pinpoint the day it started and it wasn’t pretty.  Suddenly, the mornings were beyond challenging around here.  Nate wouldn’t get out of bed, and cried repeatedly about not wanting to go to school or day care.  This was such a surprise and very new for us.  Nate had loved kindergarten from day one and never expressed any concern about going all year.  He had always loved Debbie’s and went to daycare without issue all of his previous years. 

 Getting out the door each morning was so difficult.  Nate worried about everything; the way his pants fit, the length of his shirt, whether his homework was in his bag, who was going to pick him up, the toy he was going to bring…it went on and on.  My independent little boy could no longer manage to get dressed on his own or brush his teeth.  At day care each morning you could see his anxiety building as he anticipated saying goodbye to me.  There were a number of mornings over that period of time when they literally had to pry his fingers off me one by one as he screamed and cried.  It was awful… tortuous really.  There were many times I drove to work in tears; already spent by 8:00 am and increasingly worried about my little boy.

 The evenings and weekends were also hard.  Everything was a battle.  A lot of his time Nate spent being difficult, defiant and truly miserable. In turn this made everyone else in our house miserable, as well.  Listening was an issue and he argued about everything.   He obsessed about his belongings, needing to know where everything that mattered to him was at any given time and he melted down if he couldn’t find something.  He asked the same questions over and over and needed constant reassurance. The food on his plate had to be just so and he freaked out if it came to close to certain foods he disliked on the counter.  He worried about being lost and asked me about dying.  His little mind was constantly going.  It was tiring to watch, frustrating to deal with and heartbreaking to say the least.  What a helpless feeling to watch your child suffer and have no idea how to help them.  We kept hoping it was just a passing phase, but still it continued.

 We tried everything to ease his worries and get him back on track.  We made charts and put rewards in place.  We tried consequences and positive reinforcement.  I read books and articles desperate for new suggestion and advice.  We tried talking to him repeatedly but he struggled to explain what was bothering him.  I talked to our daycare providers and they too were seeing what we were seeing.  They too were worried.  I spoke to his teacher, twice, who surprisingly had seen nothing out of the ordinary and was shocked at what I described.  If anything she said he was flourishing and doing better than ever.  Huh?   Nothing made sense and we were at a total loss and desperate to help him and our family be at peace again.

 The first week of June brought a call from daycare checking on meds as Nate had a low-grade fever.  And although he seemed perfectly healthy, this was not the first of its kind that month so that coupled with the change we had seen in him building over the four weeks prior prompted me to call the doctor. 

 I will never forget the moment that occurred as I described what had been happening.  You know it isn’t good when the doctor starts her sentence with,

“Now I don’t want you to worry but…there is this thing”.  She described to me an auto immune disorder associated with Strep Throat. She explained how with this disorder while the body's defences are trying to attack the Streptococcal bacteria causing the sore throat, there is some degree of mistaken identity and it also attacks some parts of the brain.  The autoimmune attack in turn can cause a range of behavioural and emotional problems.  She explained how it was a long shot but that we would do a strep test to rule it out.

 I tried not to panic but I did.  I went home that night and I did exactly what shouldn’t. I googled it and found out the name of this disorder….PANDAS… Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.

 That night as  I read through the list of symptoms my heart sank. 

• Irritability, temper tantrums, or mood lability- yes
• separation anxiety- yes
• age regression (baby talk etc).- yes,
•  Defensiveness caused from hyperactive senses (such as sensitivity to clothing, noise, light, taste, etc.-yes, 
• Attention deficits and oppositional/defiant behaviours-yes, 
• Obsessive/repetitive/compulsive argumentative behaviours,- yes.
•  Sudden onset of symptoms-yes.

There were also a number of symptoms he wasn’ t exhibiting but still I was very concerned.

You see with PANDAS once the autoimmune trigger is made it is there to stay.  It varies in what looks like from kid to kid.  Here is a more clinical description from the Behavioural Neurotherapy Clinic, “Children with PANDAS seem to have dramatic ups and downs in their behavior. They may have a very sudden onset or worsening of their symptoms, followed by a slow, gradual improvement. If they get another strep infection, their symptoms suddenly worsen again. The increased symptom severity usually persists for at least several weeks, but may last for several months or longer. Symptoms may gradually fade away, and the children often enjoy a few weeks or several months without problems. When they have another strep throat infection the associated behaviours return just as suddenly and dramatically as they did previously."

 Although, I had taken Nate to the doctor in the hopes for some answers, I had never expected this.  I had expected something more like,  “Let’s make note of this and keep our eye on it.”  Or “ It’s probably just a phase”.  That kind of thing. 

 Instead I was beside myself with worry as we awaited the results.  The 24-hour test result came back negative.  We were encouraged.  The 48-hour test result came back negative.  We were beyond relieved.  And although his behavior continued we still remained hopeful that it was just a phase and a reaction to the busy spring schedule we had going on.  However, a week later his blood work came back showing he had recently had a strep infection.  I thought back to the day I had stayed home with him at the beginning of May, and although it was a short lived illness, it was most likely the trigger and coincided exactly with the onset of his emotional/behavioral issues.

 I was terrified of the unknown. It was a dark and difficult time for all of us and now with this unexpected diagnosis, I was in shock.  All I have ever wanted for my children is for them to be happy and healthy.  All I have ever wanted for my family is to be surrounded by love and be at peace.  Yet it felt like we were in a deep dark hole and we were kicking and clawing our way back towards the light.

 As the news sank in and I began to wrap my head around it and become more informed (I found this site particularly helpful).With time, I put it all in perspective and of course came to realize that there are far worse things.  And most certainly we would rather have an answer than live in a world of unknown muddling our way through.

 Nate’s doctor has been wonderful.  She explained the PANDAS diagnosis; she put him on antibiotics and made a referral.  Within days the antibiotics made a world of difference and I saw glimpses of my little boy again.  As the days turned to weeks, Nate’s anxiety slipped away a little each day and he was back to his old self again.  PANDAS has only began to be recognized in the medical profession over the past ten years or so and they are only beginning to realize how many children may be affected.  We are very lucky our doctor was on the ball enough to make the connection.

 So what does this all mean?

 Well, from here on out we will need to monitor Nate’s health closely and if we see symptoms emerging take him in a.s.a.p. to be tested for Strep in an attempt to head off future exacerbations early on. 

 Also, because the trigger has now been made we will need to keep a close eye out in higher stress situations.  Although, Nate is doing so well now and his anxiety is all but gone, July really was about picking up the pieces. He is in many ways back to his old self but with PANDAS although it does go into remission when the strep infection is treated there can still be long term and far reaching effects.

 Nate continues to be very focused on his possessions and he has difficulty dealing with feelings of frustration.  He can be sensitive to sound, along with other stimulus and he can be highly affected by sugar, and medications. Caffeine is off limits.  There are still times when it feels like he is “spinning”; this is when he can’t settle or listen and is suddenly so irrational. Thankfully these times are now farther and fewer between. “Traditional” methods of time outs and typical consequences are not highly effective with Nate. With PANDAS kids there are complex things going on in their brain that I am only beginning to understand.  We continue to seek the strategies that best help Nate when he is having a difficult time.   

 Of course there are times that dealing with him can be very frustrating. However, what seems to work best is to help him settle.  To hold him.  To calm him and look him in the eye. What seems most effective is not to react but instead to remain calm, speak gently and make him feel safe and secure.  Taking an authoritative approach with Nate isn’t successful and only riles him up further.  In fact, I find this to be the case with most kids.  And although this is challenging at times, nurturing and protecting our children is a parent’s job, even when we are merely protecting them from themselves.  During these past trying months, I have always kept these words at the back of my mind, almost like a childrearing mantra of sorts… “parent in love not anger”.  Parenting truly is the hardest job on earth.  How can it not be when we are invested in it with every bit of our heart and soul?

 For me, my biggest concerns lie in the unknown.  Because PANDAS is only newly in the research, there are still so many questions.  What are the long-term effects on the brain?  Will this ever go away?  What happens when he enters puberty or adulthood? What is all this talk about the “blood brain barrier” really mean?  These will be a few of my many questions when we finally see an “expert” in the months ahead.

 But until then we wait. We pray that we are healthy and that Strep stays away. We do not know what the road ahead brings.  The PANDAS Network talks about enjoying each of the “delicious moments” when your child is at peace and their core personality intact. After the time we have been through in recent months, I am sure to enjoy each and every delicious moment we are experiencing right now and we count our blessings that our happy little boy is much more himself again.

 To all the parents out there; from this experience I have learned a valuable lesson that I pass along to you.  If your child doesn’t seem him or herself, and you have tried everything you know how to get them back on track…trust your gut and dig deeper.  We are our children’s only advocate and they our greatest treasure.  

 

Comments

[Scott C]

Good advice Shauna. It's relatively easy to deal with our own issues...but when it comes to our kids, that's a tough one.

[DAISY]

Wow Shauna, I don't really know you besides reading your very interesting blog posts, but this one was a doozy! How terrible to see such a significant change in personality in your child. I can't imagine how challenging it must be!

Thanks for posting such a brave post outlining the challenges you've been facing recently. Thank you for sharing. Good luck with the Pandas....

[chris]

Nate is lucky to have you as his mother and advocate. With you and Blaine as his parents, I know he will be fine.

Such a well written and emotional post. I hope you don't mind if I reblog it.

chris

[Katie]

That's what I love about our blog Shauna- we are open books. No pretending, no faking, just real life ups and downs. I'm sorry you have had to deal with this shitty situation, but of course, you are taking it all in stride. I know Nate will be just fine and that you will continue to search for the answers you need.

[shayla]

Thank you for sharing - I am so very moved that you would tell us about your experience.

[Lydia]

I'm glad to read this blog Shauna. You are brave to write about it all, and share your deeper struggles. I remember you talking about it in May/June, and am glad to read that Nate has been more himself. You have been through the wringer. So good you had such a wise mantra to lead you through, not to mention a wise doctor. Glad also that you have found what works the best with Nate. I agree that staying calm is way better than disciplinary stuff which can be so harsh. Prayers and love to you, take care.

[Cheri]

Have you seen an expert yet? If so, what were the answers to your questions? I am very sure my daughter has PANDAS, especially after reading your article.