Posting in this thread since the title fits. I am new here and just started reading about PANDAS/PANS last night. I am worried that my 4 1/2 year old son may be dealing with this, even though he doesn't necessarily fit every sign and symptom.
My son has always been a pretty healthy kid. He gets regular colds, but never an ear infection, strep, and he has maybe had a low grade fever once?
As far as I can tell everything started going haywire on Jan 6th. I picked him up from preschool and he was laying on the floor while the other kids ran around him. Grandpa said that he had forgot to bring his lunch today, so he might just be hungry. Grandma and Grandpa had both been ill recently with a flu and pneumonia, so I thought maybe he was catching something. I took him to McDonalds for a Happy Meal thinking it might perk him up and he acted interested in eating it until we got home. He took one bite of french fry and spit it out and ran to his room to cry. I tried the rest of the day, but he refused the happy meal. The next day, he was lethargic and just generally sick acting with lack of appetite, but he would drink milk. By the 8th, he asked for water when he woke up and threw up within the hour. He wouldn't eat or drink all day and was finally convinced to drink a glass of milk that night. On each of these days he also complained of feeling like there was hair in his mouth and he couldn't get it out. I never saw any hair, but chalked it up to dry mouth from lack of eating/drinking.
He missed school most of the next week and refused solid food. He would drink milk and occasionally a squeeze applesauce pack. We took him to the doctor on Jan 11 due to concerns that he was not eating. She said there was a long lasting stomach bug going around and to bring him back if he didn't start eating again by Monday and recommended Pediasure since he had lost a few pounds. No strep test as there was no report of a sore throat.
Over the weekend he ate lunchable pizzas for a day and then reverted right back to his liquid diet of liquid yogurt, milk, and Pediasure. We brought him back to the doctor on the 25th since he was still not eating solid food, but he did eat on the 24th since we scared him by threatening that he might have to go to the hospital. He has not eaten any solid food yesterday or today and states that it is gross or yucky for him. This is my son who used to ask me what "real food" he had to eat to be allowed candy! He won't eat candy, he won't eat happy meals, he won't eat cookies! He touches his tongue frequently because he believes there is something on it.
Also, we mentioned to the doctor about how he has started peeing his pants again about once per day over the last 2-3 weeks. He was completely potty trained and only had very rare accidents if he was doing something like playing in a bouncer house and not wanting to get out. He currently pees his pants just steps away from the bathroom. Urine analysis was negative for UTI and anything else they would normally test for.
I was frustrated. I felt like the doctor didn't take our concerns seriously especially when she suggested just cutting his food up to get him to eat it. Um... what part of he won't put it in his mouth did she not get? He won't drink smoothies because there are seeds! He's not going to eat sliced up food!
I haven't noticed any tics except for one day of throats clearing unless the tounge touching is a tic, but he is 4 1/2 and moves so much it would be hard for me to identify one. He has been moody and behaving with more defiance that normal, but it is an amount that could be associated with "going through a phase."
I could list other OCD tendencies, but he already had them - right sock goes on first, picky bedtime routine, etc.
I have scheduled an appointment in a clinic listed on the PANDAS network, but the specific provider will be out until Feb 20th. Hopefully the other doctor, who is related to her, will be able to provide some answers to determine if this might be what we are dealing with. Monday cannot come soon enough, so I came on here to vent some frustrations, but also to see if any of my son's symptoms sound like other kids you've seen. Any thoughts, stories, or suggestions are greatly appreciated!
