A former lurker on this very helpful website, I felt it was time to tell my daughter's story. I have never been much of an online message board poster, but the thought of others similar to my daughter out there being wrongly diagnosed is haunting. I am one of the fortunate ones whose child is now back to her old self (with a few very minor differences). Her main issue (among others) was anorexia. It came on suddenly, without any warning whatsoever, at the age of 10. Almost exactly 12 months later it disappeared almost (but not quite) as quickly as it had started. I will try to not to make it too long:
In the summer of 2008 I remember the day I picked my daughter up from camp. She had been there a week. She looked healthy and was happy. (I went back 100 times and looked at pictures from that day as they were the last pictures for a long while with no signs of anorexia. At first I kept trying to figure out what would have triggered this). The next thing I know, it is about a week and a half later and I noticed she all of the sudden looked thinner. She was a competitive gymnast at the time, always fit and healthy, but a muscular build. It alarmed me enough to go weigh her. I knew she usually weighed 65 pounds....She weighed 60 and I was obviously very concerned, but had no idea. I know it sounds crazy that I did not notice she wasn't eating, but it was summer. I have 5 children, all great eaters, so I just did not notice. I told her that we really need to make sure she is eating right and put some weight back on. As luck would have it, my then 12 year old son had an emergency appendectomy which took most of my attention for a few days. Within a week she was at 58 pounds and I knew there was a big problem...over 10% of her body weight in 2 1/2 weeks. From then on I watched everything she ate and it became obvious that she could not eat. She was not afraid of choking. It was classic anorexia. For several weeks I monitored every single thing she ate. It was painful for her. She would cry and tell me she doesn't know why she can't eat but she just can't and it makes her feel horrible. I took her to her pediatrician first who was just not that helpful at all. We were having no luck putting any weight on with all of our efforts. She lost another pound. One thing I started really noticing was that she was needing to run to the restroom all of the time. At first I was worried that she might be trying to vomit, so I watched her closely. I realized that she really truly felt the urge to urinate extremely frequently. She was also throwing these horrible fits. This was so odd because she had always been my calm child.
By the end of August and into September, we had tried two different local psychologists that did not seem to help. We changed pediatricians
to one who at least took her illness seriously, but still no answers. I started giving her a supplement called benecalorie in a shake every night (it enabled me to give her a fairly small shake that was probably about 800 calories). We just were not seeing improvement, so in early October, we took her to Children's Medical Center in Dallas which is the only hospital in the state (from what I was told) that would see a 10 year old with an eating disorder. The visit was a nightmare. We saw the specialists in the pediatric eating disorders unit. They interviewed my husband and I as well as our daughter. I will never forget the moment when the two doctors sat down and, in front of our daughter, told us that our 10 year old has anorexia. They said it was very rare to see such true anorexia symptoms in such a young child and that she needed treatment in an inpatient facility for a MINIMUM of 4 weeks if we did not want her to have this for a lifetime. They also explained that there would only be certain times that we could visit her, and the best thing would be for us to leave her there that day and to go home (2 hours away) and bring her things later. Needless to say, my daughter was screaming, crying, and begging for us to please not leave her there...we did not. I knew she had a life threatening condition, but I also knew that my 10 year old may never recover psychologically from being in that hospital. At that point she was not gaining any weight, but we were able to (with great effort) keep her from losing. The day at Children's Hospital temporarily motivated her to try a little harder at eating even though it was extremely difficult. We went to Children's on a Monday. Friday morning when she got up she was doing this stepping back and fourth movement. She could not stand still, and did not for several months. It was like she was in constant motion. In my opinion, I think she was terrified into having to cooperate somewhat with eating, and the stress caused these other behaviors.
Shortly after the Children's Hospital visit we got a new game plan. We changed to a psychologists with experience in childhood anorexia and we made an appointment with a nutritionist that specializes in eating disorders. At our first appointment, one of the questions the nutritionist asked was if she had been sick before this started. She told me that in rare cases this can cause anorexia. She did not say the word PANDAS and I really did not remember any major illness, except possibly a sore throat, but no fever. When I got home, I started to research on the internet and learned about PANDAS.
Her pediatrician agreed to do strep titers and they came back high. One of the two (either ASO or dnase was about 2 1/2 times normal limit...not sky high, but it was high. the other was above normal... not even double though. I did call the doctor that we had seen at Children's Hospital to ask about PANDAS, but they were not helpful. We treated her with antibiotics, but did not see any change. I think that the problem was that this was in November. We were already 4 months into it by then. Things were very strange. She was in constant motion and unable to completely sit down....the entire day. She was going to school, but would half stand at her desk. We would get her each day at lunch and bring her home to eat. My daughter who was once very social and loved her friends did not care about anything but trying to stay moving and eat as little as possible. My daughter who never went through the terrible two's was throwing horrible fits and screaming at me. My daughter who loved to read could not sit for 30 seconds and read a book.
We were going to therapy weekly but were not making progress. We did a couple more titers. They were dropping, but only slightly. We decided that we needed more help. At that point, despite the lack of help in the area of PANDAS, I really believed my daughter had PANDAS, but I also knew we needed some additional help dealing with the anorexia. In January of 2009, we took her to a week long intensive outpatient family therapy program in San Diego at UCSD. The program is under the direction of Walter Kaye, M.D. Just to make it clear, they specialize in eating disorders. We did not go there specifically for PANDAS help. They helped us tremendously with some coping skills to use to help in our daily lives. The doctors there did feel like many of her issues, especially the inability to sit without throwing a fit, fell under the category of OCD and suggested additional behavioral therapy.
After returning home, some things were better, mainly because we knew how to manage them better. We were seeing the psychologist weekly. We just could not get to a point where I could send her away from me and expect her to eat on her own. She continued to be unable to sit down. We saw a psychiatrist in March about the movement and he started her on Mirtazapine. I noticed that she was not moving as much but she still could not sit during the daytime. There was no change in becoming more independent eating...She still never would put anything in her mouth unless she was told it was time to eat. At that point we were at about 63 pounds.
In June I clearly remember going on vacation and still having her at my side at every meal. At that point, I could tell she was doing better, but thought there is no way this child could go off to camp again or even a weekend trip without me.
In July of 2009 I started noticing some strange behavior. She would tell me her stomach hurt, but it was around meal time...Could she actually be experiencing hunger? This went on for about a week. I was also noticing that she was able to sit back in the car a little better. A few days later, I showed up to pick her up from a swimming lesson...she was eating laffy taffy! A week before she would never have put anything in her mouth voluntarily, and would flat out refuse candy. She was back! The next several days were unbelievable. She went from requiring 100% supervision with eating to almost none. She could sit down in a chair. I got her in to get her blood levels drawn and her ASO had dropped to about 260.
We kept her on the mirtazipine for fear of making any sudden changes. It was really just a precaution. I knew she did not need it. We only took her off of that about 6 weeks ago. There was no change when she discontinued it.
I am sorry my story ended up so long, but I have just been thinking lately about how every bit of information I could find was so helpful to me. I know there are only a small number of PANDAS children with anorexia, and there are many professionals that just don't believe in it. I actually called back the Children's Hospital when my daughter got better. My hope was that they would be interested to know more about why she got better. I was surprised that I did not hear back from them. My thought was that it is likely that another child like my daughter will show up there in the future with a similar story. My hope was that they might consider testing for strep in a very young child before terrifying them into inpatient care.
I know the majority of the active members of this board are still battling PANDAS daily and I pray for you all. I don't think I was ever really certain she had it until it went away...Her psychologist (eating disorder specialist) said none of her patients just wake up and their eating disorder (as well as other odd behavior) disappears. I am grateful every day to have my daughter back, but always fear it could return. We keep home strep tests on hand and test her at the drop of a hat. She has had a great school year, enjoys her friends again and will get to go to camp this summer. She is 95% her old self again. I don't know if the other 5% will return. She is a little more active than she was...not hyper, but prefers to be outside playing a sport. Still makes excellent grades, but the love of reading a book for fun is just not there anymore...minor details...trust me we are grateful every day.
Incidentally, we do have the whole autoimmune family history. My Dad has Parkinsons, ankylosing spondylitis, and had Rheumatic fever as a child. He tests positive for the HLA-B27 gene which is present in many with ankylosing spondylitis. My sister and I also test positive for that gene. Two out of my sisters 3 children had a tic around age 10 that lasted for a little while and then went away.
I know most of you won't make it to the bottom of this novel, but if you do it may be because you have a child with similar issues and just need information and a little hope. I am happy to answer any questions. karen
