fightingmom

My son is still extremely picky with his choices and doesn't fit the criteria classically for any type of mental illnesses but has some symptoms of many. I feel his binge is more of an obsession and less of a poor relationship with food or body image that accompanies many eating disorders. He also does not emotionally eat, or use it as a coping mechanism. It's simply an obsession and more of a seeking and rewarding type of thing. More of what you'd see in an addiction, which ironically is caused by imbalances dopamine levels a lot of the time. I suspect that if the PANDAS gets under control this too will subside. He's much worse in severe episodes. Not suggesting this is what is going on with you, the last thing any of us needs is someone else tryin to diagnose our kids with something else they don't have!!! Just keep an eye on it. As I said he's very picky, for breakfast he will only eat the granola bars in the green box from trader joes....trying to give him something else could ruin our whole day.

My son was diagnosed with binge eating disorder. Craves, sneaks, hoards food. I have locks on doors and stash all non perishables on rooms or my basement. He will sneak down the stairs at night and try to open fridge without us hearing him and gets so angry if we do. Keep an eye on that. He too started out seeming hungry a lot and it manifested.

Thanks. I actually started journaling things yesterday. I need to be sure to keep up on it though. Not great about stuff like that. Wow. That's really something that the ped told you your son would die. What's his basis for saying that, so many patients undergo IVIG besides PANDAS patients. Sometimes I really wonder about some doctors. I've had my fair share of horrible ones myself.

Hi bulldog, So funny we were at Dr. B's at the same time. I should look up our next appt. and post before I go. Maybe we will meet some of you! Totally agree with your impression of him. He told us "it will be okay, we'll get you through this." He seemed genuine and sincere and had a confidence about him that was reassuring but not cocky. Really liked him. He also send me home with a lab order for my Husband. He may have run lyme on my son, he seemed to run a LOT of tests. We shall see I suppose. 3-4 weeks seems so long to wait. I wonder if I can get the lab results early? Yes, you are right. It has to get better. When we left Dr. B's office I cried in the parking lot. My son, couldn't figure out why I was crying, he said "Mom, why are you crying, this is a 'good thing' isn't it"? Then he went on to say that even though he knows he is sick, he's relieved to know he isn't "crazy" -- that stuck with me. The burden these poor kids are carrying around, trying to understand what's wrong with them and why nothing is helping. As tired as I am emotionally and physically (I have my own health battles and am having surgery on Thursday) - there was a strange sense of relief, or maybe just in knowing, that I too am not nuts. I wasn't chasing a dead end after-all. I'm babbling and probably making zero sense at all. Maybe someday I'll be able to articulate better.

On another note: Do any of you have advice or opinions on how to handle school, or even if I should notify them at all at this point? With exception of the vice principal who has been a bit patient with some recent silly episodes at school the teachers and staff had not been very sympathetic to my son when they were informed of the anxiety, etc. and this is even knowing that he had been in the hospital for a week. They STILL were very resistant to change his class, made us wait through 2 weeks of back and forth calls and then took a week after doctor sent a letter. To this day he gets comments from his homeroom teacher about how his test scores have been good, and even the recent standardized tests he did so well on again - so CLEARLY he was just not putting in the effort or preparing himself. I want to put a stop to their comments and their put downs, but I really am hesitant to share anything else with them as I have been less than impressed with their attitude. Any suggestions?

Thank you so much for putting things back in perspective. Sorry to hear about your son's experience with Celexa. It can be scary if it doesn't go well.

Thank you for the welcome. We only saw him on Wednesday - or was it Thursday? I'm losing my mind, truly. My son has only been on Augmentin for 2 days, he had started antibiotics with the previous doctor for the sinus infection, on Tuesday though. So, all in all this will be day 5 on antibiotics (though 2 different ones) and tonight will be day 3 on prednisone. Yesterday, I was nervous all day with him at school. Worried maybe the steroids would make him more moody, I have been on them a bunch and they can make me kind of crabby. Well, he called me on his walk home from school (only a block) just to talk! I asked him how he was feeling on the meds and if he was irritable on the steroids and he said "No, not at all. I actually had a great day and I'm in a really good mood." WHAT? Who is this child? Then he asked if he could go to his friends house. I told him he could but I needed him home early because I had somewhere to go and wanted him in the house when I left. He DID.NOT.ARGUE. At ALL!! When he walked in the house he came into my office to say hello again and he smiled at me! He was speaking slower, and not anxious like he usually is. I thought maybe these meds were working miracles. I still say, they must have done this, because I haven't seen this side of him in a long time! BUT, this morning he's been really annoyed and hard to reason with, not explosive, but certainly not pleasant. If he had not been so amazing yesterday, I would have considered today progress. Now though, I'm confused by the complete transformation and now it seems like a fluke? Any thoughts? Oh and NO more psych meds. Haven't touched them since that hospitalization in December. He was doing really well until February when he got sick.

Thanks. Best of luck with your IVIG, hope it proves to be successful. 3 PANDAS sons, you must be a strong, strong person. I always thought I was, but this has really challenged my strength that's for sure. I am a little worried that because my son has just turned 14, we are at a disadvantage going into treatment, but I'm trying to remain optimistic. How old is your oldest? How long have you been treating and with what degree of success?

Thanks SO much for your concern. I can't not explain the sense of relief I feel in this forum - just in the sense that all of you get it and no one here will tell me I am crazy. We literally JUST met with Dr. B this week. I walked in armed with 3 pages of notes, single spaced, I had specific incidents, examples, illnesses, etc. -- I didn't need ANY of it. He asked all the right questions. I had even made an association with dopamine -- the horrid effect with the SSRI's, his hands shake sometimes similar to parkinson's, and his sudden addiction to food all point to an imbalance in dopamine. Dr. B. explained how the basal ganglia is effected and hos this impacts dopamine balance. At this point I began to cry in his office. For the last 10 years I have been cautiously observing behaviors I was concerned about, that would disappear before I could act on them, or doctors would shrug off, others would deem as "quirky" and for the first time EVER this man believe me. Even better, he asked me all the questions that I came armed to tell him already. Even strange things like frequent urination -- my husband and I have often commented that my son goes to the bathroom more than a 90 year old man. Episodes of separation anxiety that showed up out of no where and then would stop as fast as they started. The list goes on. To most people on the outside he seems like a perfectly "normal" kid, some teachers have had problems periodically with behavior, but overall and until recently he held it together at school but would fall apart before my eyes at home. Anyway, I finally feel we are in good hands. We go back in 3 weeks to discuss lab work on both of us and the next steps. Dawn, strangely enough, when Dr. B was asking family history, I explained to him many of my recent symptoms and he told me *I* should be tested for Lyme. He did the tests along with a bunch of other blood work. Took about 10 vials from me and I think about 15+ from my son. It was a LOT. He did not mention any Lyme suspicions for my son though. I'll ask about it at our next appt. We are in the Northeast, before he were lived on Long Island, NY, so Lyme is certainly possible -- though his initial behaviors started when we lived in Chicago and we were there for several years and I think it's unlikely he would have contracted lyme in the city.

Hi Everyone, I started posting yesterday, but should really introduce myself. I have been lurking around these forums for a few months, soaking in as much as I could. PANDAS has been suspected in my just turned 14 yo son for a little while now (actually, since as soon as I heard about it from a family member) -- and reading the accounts from other parents and families here on this forum, I was pretty certain it was the case -- getting a doctor to even entertain the idea has been quite difficult. Over the past 2 years we have been through a psychologist, social worker, psychiatrist, another psychiatrist, hospitalization in a psychiatric hospital, and tried 3 psych meds; the 2nd being Celexa/Citalopram and leading to psychotic behavior and the subsequent hospitalization. My extremely bright articulate child, reading way above grade level from even the first grade on, honor roll his entire life, honors classes, etc. suddenly has fallen apart. Now, when I say suddenly, the complete life meltdown and crisis era was over a period of a year or two. Prior to then, he had periods of random OCD dating back to pre-k/kindergarten. I'd get calls from the teacher telling me my son was having a meltdown if he couldn't be first in line to wash his hands after art class, or he had aversions to certain foods that he always liked before. For a month he could not eat anything green. Went through phases where he'd have to organize books a certain way on the shelf and freak out if they were touched. He'd even read them and re-read them again in a particular order. Things would get lined up, cars, toys, etc. on the floor -- but only for a few weeks and then it was no longer an issue. As quickly as these things surfaced, POOF, gone. We don't have any tics, other than periods of excessive blinking that come and go. They really go for long though, could be months before I see him doing it again and then will notice it for a few days at a time. Fast forward through the years and we've dealt with emotional melt downs that came from no where, several months of an obsession with vacuuming his room. When I took the vacuum away, he started sweeping his area rug with a broom several times a day. He began food hoarding (recently diagnosed with binge eating disorder, having problems in school, not focused, can't concentrate. Just a few months ago we had to FIGHT the school to allow him to switch out his honors math class. They fought tooth and nail telling me "Well, he tested into it. He's capable, he's just not applying himself." REALLY? Are you at my house watching him cry for 3 hours just to work through 3 problems in Alegbra? It was a nightmare everyday, literally to the point of tears and fights just to get him through half his homework. We had to have his doctor say it was too much for him and his anxiety to get him out and they STILL had comments to make. Over the past 2 years he's had all these doctors - none of which could agree on a diagnosis. Every one had a different opinion. It's generalized anxiety disorder, he may be bipolar, he has OCD, ODD, ADHD is the latest. BUT even with their input, they would ALL say, he just doesn't fit the perfect criteria for any one disorder, that's why they can't diagnose him for sure. Well...it all makes sense now. He had been on low dose abilify for a few months and we saw a slight improvement in his temper and rages, though he still had a very hard time with the word "NO" or simply asking him to do something that was not on his radar at the moment. Please pick up your shoes would turn into a 4 hour war, where I'd wind up fleeing in my car and leaving, or hiding in a bedroom while he screamed outside and pushed the doorknob so hard, he'd break the lock and be able to get in. He just can't walk away when he's like that. It's impossible for him. Even if he's just screaming "WHY?" for 4 hours... In November they took him off abilify and put him on celexa/citalopram. The reason behind that is because abilify increases appetite and he was binging and hoarding food (no body image problems, no purging, just simply obsessed with going to the kitchen and grabbing whatever he can to stash in his room --- I even ended up with ants in my house because of the wrappers, etc. Within a week I noticed things were not going well on the Celexa but was told to give it a little more time. Well, he went from A/B student to D/F's in just 4 weeks. He spray painted little dots on walls and doors inside my house and his name all over my shed! He was making poor choices, had no regard for authority, just completely did not care about anything. He wound up getting violent with me and punching me and kicking my dashboard, I pulled over and called 911 and he wound up in the children's psych hospital for a week in December. Doc's there insisted bipolar. I told them no way, he didn't suddenly become bipolar. It was this medication that sent him over the edge. They insisted I was wrong. Put him on seroquel. By the 2nd day he had that gleaming look in his eye and he was figiding and agitated. I told the nurses NOT to give him another dose. They paged the doctor. He didn't get back to them right away and within a few hours he had chucked a chair at one of the therapists....I KNEW it. Even still, the doctors refused to acknowledge it was the meds and used this behavior to enforce their bipolar findings. Well, he stayed there for 4 more days and was on no meds and his behavior improved dramatically. By the end, they said to follow up with his primary psych to "rule out bipolar" sounded like backpeddling to me. What's interesting is that in October I had been diagnosed with a sinus infection, in December my husband had walking pneumonia and was out of work for 8 days was diagnosed while my son was in the hospital. My sinus infection came back in December. In February my son's behavior was once again off the wall, but he was sniffling and had a dry cough. I took him to Dr. and they diagnosed Sinus infection. He was on 10 days of amox. By 4-5 days on abx his behavior was improving. This lasted about a week after course of Abx and then it was like a firework explosion of his symptoms came back 10 fold. After a few days, I took him back to doctor. They couldn't figure out why we were there and talked to me like I had 8 heads, my son was insisting he was fine and also annoyed I took him to Dr. but I begged them to xray his sinuses. Sure enough, his sinus infection is worse than before. They started him on 10 days of abx again. A few days into abx we had our first appt. with Dr. B. He seemed positive from my sons history we are dealing with PANDAS.He started my son on 30 days of Augmentin and Prednisone taper. He took a ton of blood from my son and myself. I have a history of health issues and am actually just looking into possible autoimmune disease in addition to already having endometriosis - which depending who you ask is a form of autoimmune. History for my son: lots of ear infections, sinus infections, strep as a kid. I recall some weird red rash ALL over his body around 5 years old that took weeks to go away, but doctor wasn't too worried about it (Edit to add, I *think* rash was referred to as Fifth's disease). Not sure if there is a relevance there. Had adenoids removed and tubes in ears around 4-5 years old. Was better for about a year or so and then started getting sick again. Had fully allergy testing done at that time, found nothing substantial. Dust mites and cockroaches or something. My personal finding has been that his behavior is out of control EVERYTIME he's been sick, and even when he stays up too late and is very overtired. I don't mean like cranky kid, I mean BAD. I too have history of ear tubes, sinus infections, bronchitis, asthma. Family history of allergies, thyroid, my questionable status, a grandmother with St. Vitus Dance, another grandmother who's brother died from scarlet fever as a child - which may be irrelevant but since it was caused by strep who knows. My son has two cousins on his dad's side that are also PANDAS kids. This aunt is who told me to look into PANDAS. Also should note that my son seems to be much better during the summer. Not sure if it's the exposures at school or what. I have noticed he flares up in September -- and he has been given vaccines three years in a row required by the school. I am ashamed to say I fell victim to his pediatrician forcefully recommending the HPV vaccines and I do feel strongly that this was the beginning of the worst. No one will change my mind of that. I'm sure of it. I'm missing a bunch of things, but this is already too long. That's the bulk of our story and how we came here. It's been a long road.

I also feel for you. This is exactly how my son is when he is sick, or is exposed to someone else's illness. Something as little as askin him to pick up his shoes can trigger a two hour war. It's exhausting and does make life very unpleasant. . We have also struggled with trying to decipher if this is OCD, ODD or anxiety. If you ask his doctors, they will also give different answers and say it doesn't really fit the perfect criteria of either...heard that a million times. We have literally left the house to flee from my son, he has broken every bedroom door lock in our house forcing his way into the room when I would hide away from him. I don't have any words of wisdom we are just into our diagnosis, but just know you are not alone!

Eosinophils are white blood cells. When they are elevated it's a sign that the body is/was fighting some sort of infection, allergic response, parasite, etc. They are also checked when some type of autoimmune disease is suspected, and can signal things like inflammation, allergic responses, asthma, and more. They tend to just indicate there is some sort of fight going on in the body, but to my knowledge they don't tell anything specific. My experience with them is I have has elevated eosinophils myself during periods of illness, even had a cat with a eosinophilia granuloma - which I was told was a type of autoimmune disease in cats that flares under stress and sometimes when they have allergies. In her case it caused her lips to swell whenever it flared up...

Thank you, Colleen! I just got it! I will try to see if I can work that out, and see how far it is. I have school on Mondays all day, so they are tough days for me, but I really need to get on board with this and think it would be really great to attend that meeting. Thanks so much. I'll message you back tomorrow! KaraM, thanks so much for the response earlier. I appreciate you taking the time to post those links. Very helpful. Thx

Hi Determined, I have yet to post my own formal introduction, yet, I felt compelled to respond to you. We too have just seen Dr. B and started steroids and antibiotics. We also had been almost 2 years deep into a sea of psychologists, psychiatrists, social workers, even a stay in the children's psych hospital. Been through the ringer and back. Our children seem to share a lot of the same symptoms. Literally, you could have been writing about my son -- even down to the obsessions for just a few days -- that just diminish as quickly as they appear. We have had a different opinion from every doctor we have encountered. Bipolar, generalized anxiety disorder, ODD, ADHD -- you name it. We even tried Abilify and Celexa without success (actually Celexa made my son psychotic and led to his hospitalization). I wish we lived closer to another to offer some support during this - we seem to be starting the journey to correct diagnosis and treatment at the exact same time. We are 2 days on steroids and 4 days on abx (as my son was already prescribed abx by local doc for 2nd time in 4 weeks for sinus infections dx by xray). I'm astounded by the progress he's made in just 4 days. This isn't my thread, so I'll talk about this somewhere else, but I just wanted to say -- I think we are on the same road, at the exact same moment, and even with the same doc. I'm so thankful to have found this forum. Seems to be a truly amazing and determined group of folks.

Hi! I'm new here, but have been lurking for many months. We are newly diagnosed and live in RI. Would love more information about a support group in MA. If there is another meeting being planned, please PM me or let me know where I can find info. - thanks so much!