February 2, 2014 at 6:42 am #3209
Hello! I am glad to have found this forum. My son, and our family, changed so dramatically about one month ago and I am searching for answers and how to help. In the beginning of this, my mom found and article online about PANDAS and our pediatrician dismissed it as controversial (although indicated he may pursue tests later) so I let it go. But the more I read and the longer this goes on, I think it could be. Below are the basics of what has happened. We go back to the pediatrician tomorrow. I am looking for some guidance: could it be PANDAS? Should I push for specific tests? After one month, does it matter how it started (other than my need to know!)? Will antibiotics possibly help now? I am also pursuing a psychologist to assist me in how to parent through the episodes – what other treatment can I pursue?
Background: My almost 5 year old is a very bright, verbal, outgoing, creative, natural born leader and an absolute joy to parent and be around. He has always been intense – full of energy, feels things strongly / sensitive. He was so verbal early that we mostly skipped the tantrum phase because he could express what he needed. He makes friends wherever we go. He has had his share of medical issues (2 surgeries – one at 5 months and one at 2 1/2), peanut allergy, and some vision issues. The only non typical things about him really are he is an extremely picky eater (growing well though) and refuses to wear jeans (both of these things describe me as a child as well though so I have always figured he is like me).
During the week before Christmas, there were two cases of strep in my son's daycare class. I saw the health alert on the door, and paid no other attention to it. I was at home the week of Christmas with my son and his two cousins 5 and 7. During that week I served his cousins nutella a few times – my son is not allergic to hazelnuts and we avoid most nuts with him but had been told he could try nutella if he wanted. On that Thursday and Friday he became increasingly upset about the nutella – had they washed their hands after eating it, etc. I explained that he isn't allergic to nutella, reminded him that even with peanuts as long as he doesn't eat them he is safe. On Friday after they left, he cried until I let him take a bath and change his clothes because he sat in a chair that one of them sat in while eating nutella. On saturday, I touched him (picked him up) after eating a cookie with nuts in it – this started an hour plus of hysterical screaming and crying about touching him after not washing my hands. Over the next few days it escalated into him washing his hands all the time, trying to use wipes to wipe whatever surface he and any one else touched, refusing to play with any of the new toys he got for Christmas (that he had happily been playing with during the week). Refusing to let me make any of his foods / drinks, assist him in any personal care, cried himself to sleep at night because he “missed me” and wanted me to lay down with him to rub his back but he couldn't let me in his bed.
On Monday I called his pediatrician for an appointment after he screamed for an hour because I touched the coat he had worn the weekend before (after the cookie incident) and I hadn't washed the coat. I ended up keeping him home because I couldn't get him in the car to go to school. They scheduled an appointment for later in the week. On Tuesday, he couldn't get ready for school for wiping down every surface. I demanded an appointment that day. In the mean time, my mom had sent the article about PANDAS. I asked the pediatrician, who told me it was controversial & he wanted to try therapy and medication first. We went that afternoon to the therapist, who told me it was just an overreaction to a real fear and told my son he was going to give him superpowers to be safe to touch nuts (spin in a circle 3 times saying I'm safe). He suggested to me to just remind my son that he was safe. After the spinning in circles thing, my son went from playing legos on the floor to clinging to me (first time in days he had allowed any contact, so that was the only positive thing there!), and the therapist asked if something was bothering him. I explained that he is a very realistic 4 year old and I didn't think he believed / or was comfortable with the idea (my son refused to talk to him anymore at that point). He only suggested keeping him busy and that bright children manipulate the situation.
After a few days, some of the hand washing and refusing to be helped calmed a bit. He switched to rubbing his hands together and using his hands to brush off his body if he bumped into me or something I had touched. I just reminded him he was safe, and took him back to daycare the following week. They told me he behaved fine and did not brush his hands, etc there. They thought he realized he got a big reaction from me and was now trying to get my attention. That following weekend I tried just ignoring when he rubbed his hands, etc. The result was massive intense tantrums pretty much non stop. We focused on how to handle those tantrums (not being experienced with tantrums at all!). I tried keeping him busy with the only toy he would touch – legos. Things improved but not the hand rubbing / brushing his body off. The pediatrician, daycare, and therapist thought we were handling it well.
Last week, he started doing more of the hand rubbing at home, and at daycare now, and now in response to anyone touching him, or bumping into anything, and sometimes just randomly. He has said it makes him feel better. He has asked me if anybody else thinks like him (about the “germs” – basically nut germs). Only two tantrums this week – both when he attempted to rub my hands and I didn't let him.
Things are more manageable than in the very beginning, and he does make physical contact now (sits in my lap for stories, allows me to serve him food). He just wipes his hands off to feel better. But he still isn't really playing with toys, and just doesn't act like himself. Also, he has had several accidents during the day, a few at nap time – which he hasn't had for months. And he has still been in a pull-up at night and was typically dry about 50% of the time but now is wet every morning. He refuses to be in a different room than us in the house, despite having a fairly small house. He calls me to his room when he wakes up at night and is alone and scared – every night now instead of once in a while. He doesn't want to do anything besides stay home and / or go to daycare. He cried for an hour that he and i were going out yesterday without his daddy, which we used to do all the time. He has started to (sometimes but not all the time) spit out food / drinks that suddenly “taste” funny – he used to love chocolate milk until a week or so ago and now it tastes funny about 50% of the time. His toothpaste is suddenly too spicy ,etc. And its hard to gauge the handwriting skills thing as that was just emerging in him anyway and although he could write his name, copy words fairly neatly for his age before it was only when he really wanted to and mostly he wanted to play. His teacher did note he has refused to write most of the times they have done writing skills in the past few weeks so she couldn't really compare writing samples.
Anyway I apologize for taking up so much space here, and your time, but I greatly appreciate any advice you can give about whether this could be PANDAS and how to move forward.
Thank you.March 4, 2014 at 11:04 am #3334
Dr. Michael JenikeMember
sounds like you are getting the medical runaround which parents with pandas/pans kids routinely get. there is an article that i wrote with a mother at: www.ocfoundation.org
here are some web sites with information.
if possible, i would go to the new Mass General Hospital clinic headed by Dr. Kyle Williams. he could probably give you the best advice. i know he is swamped now but is working his way down the list of patients. he is great.
all best wishes,
Michael Jenike, MD
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