tantrums

I'm with you all. I'm actually hiding in here on the computer while DH deals with the breakdown that started about 30 minutes ago I don't get it! He's freaked out bc of a scrape on his leg. It keeps getting oozy again from playing in the water. Freaks him out because it looks worse. Won't let me DARE put anything on it. So he wants to stay out of the water. Now having a fit bc he isn't in the water.... Is it almost bedtime?

My son is a rebel from the get go He is naturally a VERY adventurous and healthy eater - that is WHEN he eats anything. But he loves veggies, chinese food, sushi (OH GAWD GAG!!!!), fish, just about any fruit... Actually, eating healthy is somewhat of an obsession so I am a bit nervous sometimes. I on the other hand, live most days on the candy in my purse (I'm an on the road social worker and rarely have time to eat). So he does NOT get it from me!!! LOL! He was fine after a couple of hours and out playing with a friend. I was trying to calm him down and wanting him to take it easy, but he was having none of that. All the better I imagine that he was feeling fine and up to old tricks.

Yes I realize that would be MUCH harder BTDT with clients, adult and children. Imagine dealing with a developmentally delayed 200 pound adult in that situation... So I have "done my time" so to speak So now of course I am worried he will only build on this experience next time. But I will take these tips and have him lay down. Hopefully that will help!

Probably not all that strange for all of the kids to have it. They could have all had some insignificant illness that they actually fought off and the rash was the end result. My DS had very minor ones here and there that weren't enough to raise flags. Or they did come precisely after a bout of croup and were significant, but I knew the root of it. The really bad one though that came out of nowhere I find very interesting now since I had taken him in and found out it was strep. if not for that rash, he might've gone completely undiagnosed then. Could've developed pandas at that time if not for the rash.

It sounds VERY similar to the viral exanthum (not sure that is spelled correctly) that my son used to always get. He would get them after an illness. In fact, that rash was onetime the way I found out he had strep throat! He always got them AFTER a pretty serious illness, but once got the worst rash I'd ever seen. I was really perplexed and ended up taking him in just for that as it was disturbing me. The ped found the strep after just checking everything. The rash in and of itself isn't an issue - it's the after effect of another illness. At least that is how I understood it years ago from my pediatrician. No treatment needed and it would always go away on its own.

Thanks! Great tips. The techs there are funny. The woman is sooo scared of my little boy it's beyond ridiculous so I was happy she wasn't there today. But then when he fell over, the guy wasn't much better. I will have them let him lay down next time. We actually planned a spinach salad for dinner so that should help. And I can throw some roast beef on top of his to add some iron.

Last week, I went to get the bloodwork done that Dr. T ordered. The tech could not find out what it all was and had to call him. During the wait that time, DS ticced like he'd NEVER ticced before. I'd never seen anything like it! He pretty much stopped when we left, but a few residual tics remain still. They called me Monday to let me know they had everything in order but today was the first day I was able to get out of work in time to get back to the lab. Poor kid was a mess when he saw me walk into daycare to pick him up No ticcing at all this time, but some OCD type stuff, nothing major. However, I saw all of the vials - I believe it was 8? and actually asked if I should expect any problem. Tech said no. However, DS stood up after he was done and promptly collapsed and started to vomit. has anyone else experienced this? I'm not sure if it was a lack of blood or just a nervous reaction. I know it could be worse. He isn't one to kick, scream and fight bloodwork. What he normally does is nearly go into a state of shock. He shakes and just looks panicked for quite a while, but this was obviously more extreme. It's very sad actually. Both of my brothers are like this - will literally pass out at the sight of a needle, so I've seen the reaction. If it's lack of blood, is there anything I can do to help? I already had him drink some soda. We're eating dinner soon and hopefully he will eat it. He's not much of an eater to begin with.

I also think my profession makes me somewhat more open to discussing things with "a team". It's just what I do with kids/adults I work with so it comes naturally to me. Someday it may come back to bite me and I'll reconsider, but it's what I do all day everyday, so I don't see the other option. My DS8 is the same as yours, he has also the screaming tic and 1 motor tic. How your son is doing? is he allergic to anything? did you do IVIG or steroid burst? Deby, he is not doing much better right now. He's having a rough week actually. He isn't allergic to anything except mild seasonal allergies and spanish (yes ONLY spanish onions family joke here he got that weird one from me ). No IVIG or steroid burst. Dr. T mentioned it, but as soon as I said when he had croup in the past and got steroids, this is pretty much what we got! And that was before he had pandas!! He agreed it would not be prudent to try with him right now So just abx. Just finished one week of Biaxin and not seeing anything yet. we're just kindof holding our own and hoping to see some change. I also however, happened to be at a birthday party at his friends house and the father is a chiropractor who works with natural health/diets. He noticed what was going on. We are going to go see him soon.

In my case, it WAS affecting school, just in ways that weren't clear. It was his first year at this school. First grade and we had done a private K. So, they were not familiar with my child. They had academic and behavior concerns. He wasn't showing his tics or directly his OCD, but was handing in blank test papers, refusing to do work. I believe the OCD he was exhibiting was unclear. He has more obsessive thoughts than actions and usually holds it in to release on me. His refusal to write on the tests was a fear of being wrong, not that he didn't know the answers. He also was going to the bathroom 15 times a day and the teacher felt he had a bladder issue. Also, the way my son's behavior was at home, still affected him at school. He goes through periods of not sleeping, particularly when his other behaviors are also revved up. If he doesn't sleep, he is tired and more moody at school, more unable to focus. I feel the teacher should know this so she has an understanding and a heads up when there is likely to be a bad day ahead.

My son is much better at school. His main presentation at school is the ADHD type symptoms. His teacher only saw tics once she was very aware of what she was looking for. Once I requested a CST eval though, the psychologist saw more than I EVER expected during her brief observations since she was looking for it. She saw things I never even saw. Now his friends parents think I'm making it up I'm sure When my son is playing outside, running around, riding bikes, swimming in their pools... he seems 90% like any other little boy in the world. If he starts to melt down, he will usually decide to run right home. Since he is running and screaming with the pack, they dont hear the tics, especially since the worst is a screaming tic. And he will run home to melt down.

I caught the two week thing. However, what was said was that that is what Sammy needs NOW when he sees any symptoms creep up. That doesn't seem too off base to me. He is "back to baseline" so to speak. So he knows what his immediate symptoms of a strep infection are and is able to treat it immediately and I'm guessing prevent the auto immune response?

I cannot go into specifics due to HIPPA, but due to my work, I firmly believe this causes permanent brain damage. I work with people with developmental disabilities and have been re reading a LOT of files lately. Not many have very good bloodwork draws in them, but some do and I'm finding interesting numbers in some of people with autism spectrum, ocd and other mental illness Some of the younger individuals HAVE diagnosed pandas.

My husband, who does believe DS has PANDAS, but wavers on treatment (no meds preferred and frequently argues that I over react) was in tears and wants to watch it again tomorrow when he is more "awake". Also, already having texts and FB messages from friends and relatives in shock at what we've gone through after seeing it. I had already warned them that Sammy's story is much more intense than ours, but since Carter normally holds it together playing (since there is little structure) they don't see that much of it and they also didn't see him much in December/January when he was getting diagnosed as he was critical. I think this helped awareness for those around us. Hopefully it did so on a larger scale. I am hoping that others that I'm not in such close contact with, our doctors, teachers, school nurse, etc... watched as well to get a better understanding. I was surprised how much more info was in that short segment than the book! There was MUCH more similarity to our story than in the book actually. As stated in the other thread though - I wish they'd knock it off with the "rare disorder" stuff. Of course, that is the basis for that show. I watch MD a lot

I KNOW I am soooo annoyed with hearing it called rare! I would bet money there are thousands upon thousands of kids out there undiagnosed due to ignorance! That needs to stop! I continue to count myself among the blessed for being lucky enough to happen to know not one but TWO people whose lives were already touched by this so my son did not have to suffer undiagnosed for long! I watch this show frequently anyway. I'd bet I'd have caught this by watching this if I'd not sooner. But it's frustrating. DOCTORS should know this!

Watching it now. WOW! So many more similarities to my son than mentioned in the book. It would scare the heck out of him. He can't watch it. It's making me cry too. I realize we were soooo lucky! If he hadn't gotten ABX within a couple of weeks like he did... I have to say too - it is making a HUGE (positive ) impact on my husband as well. Thank goodness something finally has!

Actually, I saw the same thing, but I did that last week. I ended up just setting hte DVR for every episode of the show. I didn't check again in the past couple of days. I did however get an e reminder directly from TV guide/discovery channel that it is on tonight at 10.

Honestly, hadn't thought about it. But no way no how here!! He just turned 7 and one of his biggest, and consistent obsessions from day one has been having somethng wrong with him or dying. I have told him he has pandas and that is why he takes medicine and sees all of these doctors, but pretty much left it at that unless he asks - then it's a very simple answer based on the question and his frame of mind at the time. I myself though, got an email reminder, have it set on my phone caldendar, written on my desk at home and set in DVR - LOL! Reminding everyone I know as well to watch it.

Oh yes, that is exactly the type of stuff we are dealing with as well. I'm so very sorry. I sure know how hard it is to deal with. I think all we can do in regards to it, is keep trugging through, try whatever suggestions other parents can give us that seem appropriate and get through each day.

I was posting the same time as you Yes, it sounds like very similar episodes. He was out all day today in the rain, but it was HOT so I let it go. I didn't see harm in it. But then when I saw lightning and told him he had to come in, WWIII... He cant' take augmentin. He had a very bad reaction to it when he was younger and had "glue ear" I am realizing we may still need to adjust meds. We're only 7 months into this - from first signs to now.

I should add - I think I FINALLY found a therapist And more importantly, convinced my husband that it is necessary. It's more for me than for DS actually as I need help knowing how to parent this child I now have as opposed to the one I had 6 months ago It's sad that it takes running out of the house for me to jump to immediate action. Obviously that will NOT be tolerated under ANY circumstances. So it leads me to wonder if I can get control over that, why not the less serious infractions? Sometimes I feel like I just adopted a child from a foreign country and have no idea what to do with him No idea how to communicate to him. And HE is obviously just as frustrated as me, which makes it even worse. I can tell this upsets him a great deal too. He seems to want me to control it for him.

We are really having a problem with our son listening. He just turned 7 yesterday. He is on abx, just switched from amox to biaxin and showing little improvement. In fact, the excitement of his birthday and the end of school brought forth a flurry of tics and compulsions. However, the not listening has been on going and only getting worse. Some things I have chalked up to compulsion at this point, but others - I'm really at a loss. I have read some info that says ODD is common. For instance, the most common (and scary) thing he does is tell us he is going out to ride his bike, scooter, skateboard etc... Often it is before he is even dressed or it could be bad weather. We tell him 'NO' and he just announces "I am GOING" and is gone! When I go after him and tell him to get back inside - I have to tell him several times, often go physically to him and take his arm to get him inside (I don't have to drag him, but need to physically get his attention by touch). He does this with other things, we are telling him no and he is just continuing to do it - get a piece of candy, break a toy, etc... And of course, no matter HOW monotone and calmly I continue to repeat myself and address him, it turns into a screaming mess of "you are MEAN, stop yelling at me!" Does this sound like ODD, or just an aspect of ADHD, impulse control or have I just lost all control here?

I hope it improves for you all and you can enjoy yourselves. Hang in there and try to focus on the positive aspects of the trip. I would think it's partly excitement. That gets my son every time. he is a mess today bc it's his birthday and his party isn't until 5. My DH and I are currently at odds about our planned vacation - a trip to Maine. It's a 6 hour ride and then the trip within Maine involves a LOT of time in the car. We've always enjoyed it, but the car is DS's LEAST positive place right now and I just don't know how it is going to go. I'd rather stay closer to home and do more active things with him this year. But... on the flipside, we need more of the relaxing atmosphere after the past year we've all had. Don't know WHAT to do! Please do update us when you can and let us know how you are making out.

Exactly!! However, they didn't exactly stop He was really good for a long time with the tics. He completely started with the snorting tic yesterday and that hasn't stopped He was a MESS at Tball tonight could not stand still or pay attention for anything and he is usually good. Then we took him out for dessert afterwards and he was biting his arm in front of us, which he has NEVER done! I never saw him do it before, just the marks afterwards

I took my son for bloodwork today. And the previous thread on bloodwork was SOOOO right on cue! It didnt' get done. They didn't know what some of it was and couldn't reach Dr. T then and there for clarification So we have to go back. But we were in the waiting room for about 30 minutes while the tech tried to work it out. The whole time, DS was ticcing all over the place - both motor and verbal. It seemed like every single tic I'd ever seen or heard was coming out non stop! He was barking, snorting, throat clearing, screaming, etc... one right after the other. He was blinking, licking and touching his chin to his shoulder - all while pacing and repeatedly touching the door despite my asking him not too. The door swung in and I was afraid he'd get banged if someone came in. Has anyone seen this in their children? I know he was a bit stressed about the bloodwork, but honestly, he seems to handle it well overall. He'd MUCH prefer bloodwork to the "throat poke". I've NEVER seen him tic like that! and as soon as we left, he completely stopped!

I know - really? I work in Developmental Disabilities for the state. Early intervention is crucial!! Doesn't help much if you have to wait a year for the doctor, does it? Luckily, I don't feel this is a critical need for us at the moment. I agree - I'll just hold on to the appt. for now and see later on. I'm doing the same with Bristol Myers (UMDNJ children's hospital). I made the CHOP rheumatology appt after that one. BMS is in october and CHOP is August, so if I'm happy with CHOP I'll cancel BMS.