Ok, longtime lurker, first time poster. First, I want to thank everyone who has contributed to this website. I am so grateful for all the information, wisdom and support I have seen on here and I have only been a reader!
It seems I stumble onto this forum every few months when my 5 year old son starts ticcing and then they go away and I laugh at myself for ever being concerned...
But, now I am pretty concerned. All the symptoms/behaviors over the last year and a half seem to be pointing to PANDAS. We are going to see a doctor tomorrow who was recommended on this forum (Dr. Frederick Lloyd, Palo Alto, Ca). His regular pediatrician thinks I am crazy and will not even return my phone calls. He has a neurology appt. in March but I do not think this doctor treats (or believes?) PANDAS. Can someone please tell me if I am correct in assuming that these symptoms point to PANDAS.
-Ticcing that comes and goes: this last episode has lasted almost a month and involves throat clearing (got so violent he broke blood vessels in his eyes) and blinking. He has had tics for about a year and a half, they stick around for about a month and then go away for 3 to 6 months. The tics are different with each episode, it is usually one or two that remain constant throughout the episode, they have been sniffing, blinking, coughing, grunting, throat clearing and bottom clenching.
-Major sensory sensitivity: he will only wear crocs and a few of the softest t-shirts and pants. Refuses underwear, socks, jackets, hats. This is new within the last year. He used to let me dress him like Little Lord Fauntleroy with neckties, stiff shoes and argyle socks! It makes me want to scream when people tell me it is because I ALLOW him to get away with it. This morning he and my husband got in a battle of wills and it took over an hour and a half for him to get him to put on a jacket and he was screaming like it was burning him.
-His fine motor skills are lacking: he has been identified as highly gifted yet he can hardly draw or write. He refuses to play with toys that call for fine motor skills.
-Major social/separation anxiety: this one baffles me. He used to be so outgoing and friendly. When he was in 3 year old preschool he would bound into class, had tons of friends and hated to leave. He is now homeschooled, he was going to kindergarten, but it was getting to hard to pry him off of me, there were even times he would puke because he was so upset. He now takes some classes where I stay with him and if there is ever a new child he refuses to go into class or tries to hide under my arm during class. Many times he refuses to go anywhere if there are other children (birthday parties, classes). We have also had to move him in with his 2 y/o brother because he refuses to sleep alone.
Hot flashes: He is always saying he is too hot and trying to cool himself down. He stays naked most of the time at home even if it is freezing outside.
-Inattention: at times it seems he does not hear me, he cannot stay with one activity for more than a few minutes. Much of the time, he wanders around aimlessly.
-Obsessions and phobias: sometimes it is just asking me things over and over all day like, “What time is it?” or "Can we build a real rollercoaster?". Also, he can fixate on certain things like right now it is rollercoasters, it is all he wants to talk and he says he cannot stop thinking about it. One time it was watercolor painting and he woke up in the middle of the night and was begging to watercolor. He stayed awake until morning and I allowed him to watercolor. Sometimes he is easy-going, other times he needs his chair on exactly the right tiles to be able to sit or needs this car seat straps in perfectly flat on his body or he FLIPS OUT (screaming, crying, saying he hates everything). Today he refused to leave the house because he was worried his pants would fall down and show his private parts (it was totally irrational because his pants were not in any danger of falling).
-Dilated pupils: people have mentioned to me a few times how dilated his pupils are. I never thought much of it until the other night he was ticcing a lot and had very dilated pupils. He had a kind of wild look in his eyes and he started saying he couldn’t breathe. He calmed down pretty quickly, but I keep noticing his dilated pupils.
-Horrible body odor: he has had this since 3.5. We have had all the endocrine tests associated with premature body odor and all were normal.
-Teeth grinding: he grinds his teeth all night it is so loud I can hear it down the hall.
-Impetigo?: He started getting these bumps that looked like boils on his thighs when he was about 3. His pediatrician prescribed Mupirocin ointment and said it was probably staph. He still gets them every once and a while. He got 2 at the beginning of this ticcing last episode.
He has never had strep that we know of. He has had several extremely high fevers (104-105) one with a rash. The high fevers only lasted about a day and he never went on antibiotics. The first time he was on antibiotics was back in December for a cough that lasted for about a month.
I give him vitamins and supplements: CALM, Essential Oils, probiotics, multivitamin, S boulardii. We try to keep him on a very healthy diet with low sugar and mostly organic, whole foods. He does watch what I consider to be too much TV and plays video games (about 2.5 hours a day total, some days it is more). I allow it because it is all I can do to keep myself from going insane (if he is not doing this he is following me EVERYWHERE). I have cut out "screens" like TV and computers before but it did not seem to help with the tics.
I would be sooo grateful for any input. Does this sound like PANDAS? What should I say to the doctor? I am trying to get the Cunningham test, but have not gotten any response to my email. Are there any other tests I should ask for?
-Lindsey
