Hello! My name is Tiffany. I am a mom to 3 kiddos (2 boys and a girl), I am 28 years old. Myself and my husband and our kiddos live in Washington state.
Where to even begin?? I suppose it’s best to start from the beginning. ..so that is where I will start!
Isaiah is our middle child. He was born on Christmas day in 2005. He was such an easy baby and perfect in every way. As he grew he continued to be so laid back, independent and a completely happy child!! He was always doing anything to make us laugh and didn’t get phased by much of anything. He was one of the most easy going children I had ever met!
October 2009 (3 ½ years old) Isaiahs first time with strep throat. This was also a month after preschool started for him. He became EXTREMELY emotional and anxious. I took it that he was nervous about starting school and having a hard time adjusting, which looking back now is silly considering he was never that way before. In the course of 7 months he had strep throat 6 times and scarlet fever once. He had high anxiety throughout that year of school, but also had strep for the majority of the year. He had a tonsillectomy in June (4 ½ years old). Shortly after his anxiety heightened…he was afraid to go on an airplane, talking about it would put him in tears, and that was strange considering we had just returned from a trip to California by plane in May and he had no problems with it. He also became terrified of carnival rides, which were always his favorite in the past. Again, I took this all as being “normal” for his age?!
Through that summer (2010) he did pretty well, until school started, then his emotions started taking control again, he didn’t want a new teacher, was scared to be in a new class (all same kids though as it was the same preschool) and crying frequently. He also quit eating for awhile. Apparently I had told him at one point that you have to eat to get big. So he decided to quit eating because he did not want to get big and die. He would also get anxious when we separated, he would tell me, “Mommy, I love you so much, please always remember that.” As if he would not be here to tell me?! It scared me horribly, and still does. Then he started getting better again, I saw some of my “old” Isaiah coming out, he would dance just to make us laugh, crack jokes, and just be silly.
Fast forward to a couple of months ago. He quit sleeping in his bed, he said that he saw a commercial a long time ago at his nana’s house that kids died in their bed, so he now will only sleep on the floor. He does not eat barely anything still (he is maintaining his weight however so that is good). And he has started showing some more OCD tendencies and separation anxiety. When anyone has to go anywhere, either dropping his brother off at school, his dad going to work, me going to the store, nana leaving our house, Isaiah MUST wave and say “love you good bye” until he feels right. I have had to video tape it to show his brother after school if it was not done enough, and there has been some major meltdowns if it is not done the right way. He has started needing to know numbers. Yesterday I went to the store and he wanted to know how many items I was purchasing, I told him 3 (because that was the plan) I came home with more and he was upset that I lied to him. Today he sneezed, I told him bless you, he explained that I needed to say it two times.
Last week I started looking online because he has been sleeping a lot (which he does when he is sick, and had mono a few months ago), I was also looking up OCD symptoms and stumbled across an article on PANDAS. I called the doctor to see about getting his iron levels checked since he has been so fatigued again. They asked us to come in, while I was there I mentioned coming across the article and some of Isaiah’s symptoms. I know our pediatrician thought I was crazy, however he listened to me and said that since we were doing blood work anyhow for the fatigue that we should check his ASO titer (level of strep), although he was fairly positive that wouldn’t be the case. So imagine my surprise when the doctor called me the next day and informed me that Isaiah’s ASO titer came back at 580 (normal range for our lab 0-250). He feels that it is a good possibility that Isaiah does have PANDAS. He started him on Cephalaxin 500mg twice a day for 2 weeks, than we will go back in to see him.
I am not sure what to do from here or where to go?! Does this sound like PANDAS? Are we on the right track??
I have gained so much insight reading some of your posts and researching this, however it is hard for me to grasp that this is what he actually may have, and what to do from here.
If you've gotten to this point, thank you so much for reading, and any help/advice/support you may be able to offer!