Wednesday, March 15, 2017

Living With PANS/PANDAS

Thanks to everyone who watched and shared the PANS/PANDAS video on yesterdays blog post. I received quite a few questions and thought I would do another post on the topic and give a little more insight into what PANS looks like for Kiana as well as why it is so difficult to find and acquire treatment.

How will I know if my child may have PANS/PANDAS?
Both diagnosis have an acute onset. Overnight the happy child is gone and in it's place is a child who has anxiety, fits of rage, OCD and tics among other things. 

How is PANS/PANDAS treated?
With antibiotics, anti inflammatory's, supplements and IVIG. The trouble is, most long term treatment with antibiotics is not covered by insurance, so doctors who successfully treat this illness do not take insurance. IVIG is a successful treatment but the cost of $5000-$10,000 per 10 pounds of body weight is not something many people can afford. Diet, supplements and life style changes are also incorporated to aid healing.

What is a Flare?
A flare is when you see an onset of new or recurrent symptoms. For instance, Kiana can be doing well and suddenly the rage is back. This rage is slightly different than a "trauma rage," although I can't really explain the difference other than it feels different and it is an angry rage versus an afraid rage. We are still working at getting Kiana back to baseline. She hasn't returned to the happy, healthy child she was over a year ago. When she returns to baseline and remains there for app. a year, she can discontinue treatment, although the disease can and will, return at any time.

Are the symptoms always the same?
No, they constantly change, although for Kiana, rages, verbal tics and intrusive thoughts have always accompanied a flare. Verbal tics are when a child makes constant noise with their mouth, not usually words, just noise. A morning of constant noise is enough to make my ears hurt. Intrusive thoughts are when a child has thoughts they cannot control, most often thoughts of harming themselves or others, which is terrifying for them. There is a huge variety of actions/behaviors that can be classified as tics, including facial grimacing and awkward body movements. The anxiety that usually accompanies this illness can be debilitating. Many children cannot even attend school because of their intense anxiety. Thankfully Kiana has not experienced it to that degree and the school has worked with us when it has been a problem. There can also be a host of physical side effects in addition to the devastating mental ones. PANS/PANDAS is an auto immune illness so one never knows what will be affected.

Will she ever be cured?
There is only speculation at this point as to how a child with this illness will be affected in adulthood. For now once she returns to baseline, if that ever happens, we will continue to treat each new flare as it comes. PANS, which is what Kiana has, is triggered by infections/stress and due to the trauma she has already suffered in her life, she is prone to stress which makes her illness more complex. This also makes it more difficult to get her to baseline as she is constantly faced with things that trigger her PANS.







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