- Posted January 21, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
PANDAS (no not the cute black n white bear)
Ky's onset began around preschool age between 3-4 yrs old. Ky was born with 2 heart defects and required surgery at 5 mos old. She was also born with a genetic syndrome called Noonan Syndrome. Which we didn't get a diagnosis of until she was 3 yrs old. Her brother and myself have this as well. After we received her Noonan Syndrome diagnosis, we thought we had an answer to all her problems but this was not the case. Ky began only sleeping every 2 hrs a day. She started exhibiting seizure like activity at preschool. She was having over 87 stares a day which would last between 2-3 secs long. We contacted Neurology at Children's Hospital. They wanted Ky to come in for a 24hr VEEG. So we did. Neuro said her eeg had electrical discharges happening at different times but no seizures. They said because she was only sleeping every 2 hrs at night her seizure threshold was building and so they said to put her on an adult dose of melatonin. We then went for a 2nd neuro appt and at that time she was put on Tenex but it did nothing for her tic disorder(as it was stated on her paperwork). Neuro eventually dismissed us cause they said there was nothing they could do right now so they labeled her seizure prone and told us to watch when she hits puberty. Eventually with getting her on a sleep schedule the vocal & motor tics disappeared but everytime she was getting sick we noticed a slight return in them. We then contacted genetics and were told they had no information on eeg changes related to her syndrome and it's not impossible to have 2 underlying diagnosis.
By the time, Ky was 5 yrs old she received a diagnosis of Classic Autism from a developmental pediatrician. Her behaviors of self injurious would continue til we applied for wraparound services to get her a TSS and a behavioral consultant. Symptoms can wax and wane. In 2011, Ky went from using a regular voice to not talking at all. She now whispers and has for 3+ years!! Just this past March 2013, Ky had a positive strep culture and we saw lots of behaviors (cursing(reminded us of someone with tourettes), peeing on the carpet, eloping, blowing raspberries, increase in self injurious behavior. Brought our concerns to the pediatrician who claimed Ky's behaviors were the antibiotic she was on for strep "we'll do a culture but she won't come back positive because this antibiotic should've cleared her up". Her pediatrician was becoming real snippy with us and her speciality is mental health behaviors well she starts seeing Ky flap her arms and whisper to us that she wants to go home, the pediatrician says "why does she do that", I looked at my husband and I looked at the pediatrician and immed. blurted out this is why we are in here today. She has autism and we are seeing behaviors out of her we have never seen before and we think it is PANDAS. Well, come to find out they are in conjunction with Children's hospital which is anti PANDAS. She then goes on to prescribed another antibiotic, this time augmentin but only for 10 days. On day 5 our daughter was working on getting her voice back, her rocking movements stopped, her SIB was diminishing on the day the antibiotic was done, she was lost AGAIN.
Finally I had enough! I found a DAN dr who is familiar with an autoimmune condition known as PANDAS. When I made the appt. I just told him about our daughter's autism diagnosis and her genetic syndrome. By the end of the appt, Ky finally had her diagnosis of PANDAS!!! Her DAN dr said he believes back in preschool Ky WAS experiencing subclinical seizures.
There's so much more I could say... both about PANDAS and unravelling the mystery of Ky. We've only just begun to gather the ingredients. She is currently on antibiotics and has made a slight turn around. Her SIB has diminished. We are working on getting her voice back she does talk but we call it her spongebob voice, it's very squeeky. Ky does not get any cheese or yogurt since both contain the strep strain. So do alot of the probiotics out there as well. We will be including the GF/CF diet in the near future as well. We need to start slow with Ky. Often times no single doctor will connect all the dots. It's our job as parents to take everything we know and figure out what we need to question -- as well as who we need to ask. WE ARE THE BEST ADVOCATES FOR OUR CHILDREN.
I've learned to tell myself when you have children, not all babies are born healthy, and whether they have 10 fingers and 10 toes is really not so important. It's all just part of parenting. If you aren't willing to accept having a child with a problem, you just shouldn't have kids because the odds are there. Most people out there aren't taught this, and until you have something hit you up close in the face, you just aren't aware that it doesn't always go the way you expected. We have learned and grown from our experience so far. When you are hit with something like this, it doesn't mean you aren't good parents. It just means that you are learning about something that no parent ever expects to have to learn about.
Children with PANDAS often experience one or more of the following symptoms in conjunction with a rapid onset of Obsessions, Compulsions and/or Tics: These are Ky's
ADHD symptoms (hyperactivity, inattention, fidgety)
Separation anxiety (Child is “clingy” and has difficulty separating from his/her
Sydenham’s Chorea and/or Choreiform (involuntary) movements
Mood changes (irritability, sadness, emotional liability)
Sleep disturbance (insomnia), separation anxiety at bedtime
Urinary urgency or frequency/enuresis
Marked deterioration in handwriting and/or math skills
Age Regressive Behaviors
PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections. http://www.pandasnetwork.org