tantrums

My DS has really bad night sweats like that. Most nights, I end up completely changing him and the pillowcase before I go to bed. Honestly though, in our case, I think it's likely Chiari related. I have the same problem (and have Chiari) and DS did this before pandas as well.

Best of luck today!

DS was put on 300mg caps (hope he can swallow!) - 2 a day. He is only 48 inches and 46 pounds. Does that dose sound okay?

WOW! Do we have the same kid or what? Mine also wants to draw on the balloons if he isn't popping them. One of his biggest obsessions is drawing and I can often tell by how he is doing with that, does he do the same one over and over, make US draw it bc he thinks his isn't good enough, have to cover the whole wall in his room with paper, etc... It's always an indicator for me as to when things are going south. Sleeping with his crayons now... Yep, we're nearing the south pole at this point! I am going to get the balloons today. I think it IS best since he hasn't yet had a rage over it. He has been asking fairly nicely so it's not like I'd be rewarding him if I wait until he DOES rage and then end up getting them. I am going to discuss "store day" with him. I think he does usually respond best when he knows what to expect. Wish he'd do the same for me!!! I feel like I never know what's coming at me anymore I do also need to really sit and discuss this with DH. The repeating does work in this situation. I said before I wasn't impressed by the book, but I do realize there are some good suggestions there. DH will likely to better with a script. We did start family counseling as well - just have to get DH to actually go with us at some point But I realize I'm doing things wrong too. Having a really hard time figuring where to draw that line between behavior and stuff he just cannot control. DH HAS come a long way I should say. He has accepted the diagnosis, which he argued and hasn't complained about the constant stream of money going out for uncovered medical expenses, which would've been HUGE for him in the past. Maybe I can encourage him to take some of my ativan in emeregency

I'm so sorry! The excessive sleeping seems very scary I would suggest an immunologist or rheumatologist. Some of his symptoms just seem much more like lyme. I had orignally thought my DS had lyme and had researched it quite a bit. Best of luck!!!

I should add... I have to work on my DH! He frequently will come in and start yelling as DS is getting agitated and I KNOW it's only making it worse. I may have to start breaking that cardinal rule of "never contradict each other in front of the child." Last week - DH told him he had to sit in time out on the step. DS started running downstairs. DH would NOT let him go. He only goes downstairs bc it is quiet and dark down there - I've seen him use it as a personal time out. I said let it go and let him calm himself down. DH wouldn't budge. That whole incident might've been a lot shorter if DH didn't get into a power play with him. So... do I go get balloons today or no?

So does "store day" seem to appease at least a lot of the time? He almost seems desperate to go anywhere. If he figures he's NOT going to a store, then it's "take me to a restaurant". And it's not like we are never out of the house either. Other times, when he isn't focused on some particular thing, he will refuse to go with one of us - we always ask him to go wherever we are going. I hate balloons! I was a spaz about him having any latex balloons when he was younger bc of the choking risk. He still makes me nervous. I've seen him biting them But typically he just wants me to blow them up so he can pop them.

My DS just isn't doing as well as I'd hoped. We are seeing an overall increase in most areas and some new behaviors all together. I'm starting to seriously look into IVIG and am going to ask about trying the steroid burst. But this one in particular has me perplexed... He will suddenly "need" to go somewhere. He can be swimming in the neighbors pool with his friends (his favorite activity) - suddenly get out, run home and announce "I want you to take me to the pet store for a new fish" or "I need to go to the toy store". Of course, any normal response - busy now, don't feel like going out, don't need another fish, etc... gets met with a rage. Even if it is something I had said initially we could do later or the next day, he escalates so quickly and so badly that NO I cannot (being somewhat rational here) take my child for a reward So the answer 95% of the tiime ends up being no - and ends up in a rage. And then he will start over the next day. "will you take me today?" "will you take me later if I'm very good?" "why won't you ever take me??!!!" BAM! He told me two days ago that he wants balloons and I'm just cringing. I did go to the food store yesterday and no balloons. He got testy and told me "I TOLD you they don't have balloons there! When are you going to get them?" Didn't escalate, but if I don't come home with balloons today or agree to take him to get them - I'm facing another rage. Now I don't want to get them bc I cannot be ruled by a 7 year old. And when he gets the balloons, we will be back on getting another fish What IS this? Is it an OCD behavior that he suddenly decides he NEEDS to do something so complex? Any advice on how to handle this one? I am SOOOO hoping it morphs into something else and SOON!

That sounds more like tic to me. If you can TELL him to drop to the ground and he does this... then it's not a seizure. Someone cannot respond to you during a seizure. They cannot respond to commands. Now, I HAVE dealt with two people that had "running" seizures. I don't really understand it. These were only determined by a very FANTASTIC psychiatrist. The running was actually part of the aura - I guess a fight or flight? What he had told me was the running preceeded the seizure. In the one persons situation, if he was stopped he would get incredibly violent and the whole situation would turn catastrophic. So I'm not clear where the line was drawn between aura and seizure. This reminds me slightly of that. I wish I could remember what exactly he called it. That individual moved out of my region, or I'd see if I could find a record of it

I'd also like to know what they look like. I have seen the gamut of seizures through my work. I can't see mistaking a night terror for a seizure! That is truly just odd. I'd have run from that doctors office. Night terrors happen at a certain point in a sleep cycle - usually 90 minutes after falling asleep. My son's are like clockwork! There were times he had them during naps when he was younger, but not often. If there is a question of seizures, I'd definitely ask for a 24 hour EEG to be done. I know tons of people who live with chronic seizures and do okay, but if it were my child, I'd want to know for sure WTH was going on! Also, there are loads of different seizure meds and I've realized that everyone responds differently to each one. And none are without side effects. I'd want to know what type of seizure and how often before trying the meds. Best of luck!!!

I'm sure all of us would MUCH prefer to be a bit less informed I thought I had my head full (no pun intended) with the ACM stuff. Didn't know I had room for pandas stuff too!

No - he never had the orapred without croup. The croup was very much "prepandas". He had it from 6 months on until 6 years of age. Once he past 5 or so, it started to taper off to a little less. When he was 3 and 4, he had it 7 or 8 (or more!) times a year! Would use the nebulizer, but eventually would always get to the point of needing the oral steroid, which would kick it out. Seems like the deficiency is the reason for this. Then he got H1N1 and actually got through that with no croup! I was sure he'd kicked it. Finally outgrew it Then it was about 2 weeks after H1N1 that the pandas symptoms showed up. So maybe then, he just may not have that reaction to the orapred now? That would be nice. So it may be worth considering.

Shoot! I'm at work and seem to only have two pages of the bloodwork with me. So I don't have the very specific page. But it is IgG2 and IgG4 that is the main problem. I believe the IgE was also an issue, but don't have the sheet now with the ranges.

My DS is just NOT doing well. I do think it is partly adjusting to the gluten free diet. Or at least I am HOPING that is what it is. His recent bloodwork showed a subclass defiency. So it looks like it's quite possibly IVIG would be covered by insurance. It honestly isn't something I had considered bc he WAS seeming to respond to ABX. However he is just doing so badly lately that I'm seriously starting to consider this. I am waiting for a call from our immunologist to see if she would recommend and/or can do it herself. I'd never even discussed it with her so I have no idea. I was under the impression that IVIG was given two or three times and then you were done. HOwever, I'm reading a lot of posts lately that seem to read like it would be a never ending procedure should we start. Is that so? Or do they ever just respond within a couple of times so that it isn't needed anymore? Also - is the steroid burst necessary to attempt prior to IVIG? I understand it's a good indicator of how IVIG would possibly work, but my DS had to use steroids for chronic croup most of his life. This was pre-pandas and when he needed to use orapred, we called him "steroidboy" it was NOT pleasant!! Actually looking back now, I'd say that gave us a small preview of what was to come with pandas. Steroid burst really scares me!

I'm still trying to figure this out myself, AND trying to get that MRI to find out if DS7 has ACM. But I have done some research as I'd originally thought he was presenting with ACM when this started and I'd not yet heard of pandas. I also have ACM and have to have the decompression, so I can somewhat venture a guess with some of it. The language/speech - I agree with PP that said it was also waxing and waning. I have days I can barely form a complete sentence. Mainly focused around word finding, but then it can affect a whole conversation. I would think a 2 year old learning language, this could cause more of a problem. Also - don't forget how ACM can affect hearing. I know I have such ringing and buzzing in my ears sometimes that it's hard to hear correctly. This would certainly affect the way a toddler learns language. I DO think the swelling from pandas would affect the cerebullar tonsils. Very close in area and if your son was lucky enough (I know - eye roll here) to be diagnosed early then he must have a significant herniation already even if it is only ACM1. I had a neurosurgeon explain to me how the fluid builds up but then disipates so I sometimes will have actual months where I feel pretty good with little problem. But the pressure when it is too high - causes all sorts of weirdness. So add swelling to the BG from pandas and I would imagine it's just a whole other issue to deal with in that little brain Personally, I tend to think the food texture issue is OCD. Usually ACM would only cause gagging/choking, not a preference. Although, it's possible he did do that and is scared now. Light sensitivity I would think is definitely related! I have major light sensitivity and also sound. This was one of the first things that made me cringe with my DS - he started with headaches that are aggravated by light (and also movement of his head ) Also, if he has any vertigo - that could affect a TON of other sensory issues and he wouldn't be able to verbally express the problem to you yet I'm so sorry you're dealing with both of these and with more than one child no less! Like I said, I'm still left wondering with my DS if he is affected with ACM. Problems with the insurance for sedation for that MRI and a neuro that says ACM is NEVER hereditary have held us up. But I do know at least my DS isn't presenting as surgical. I just want to know for future monitoring, sports, etc... at this point. I also don't want him to suffer as many years as I did. Also - honestly from what I have read on the surgery, especially for children, it really isn't that bad. I personally don't fear it at all myself. But of course I've had one heck of a headache for 14 years. I would fear it more for my child of course. But I hear more stories of kids just sailing through it more than any with ANY issues from it.

Hi PA folks Lehigh Valley here... I also do consider ours sudden onset bc it was within about a 2 week period that everything showed up. But no - in my house it wasn't that he woke up one day with ALL of it. It continued to escalate as I watched wondering wth H1N1 did to him

Best wishes to you all!

Thank you so much for all the replies and great ideas! The more I think about it - the more I'm thinking gluten free IS affecting him. But I can fix that. I just need to make sure he is getting more protein I think and eating more substantially more often. He won't eat bananas and apples we got - he wants mangos and kiwis LOL! I planned on getting some more stuff tomorrow so will load up on cheese, eggs (he likes hard boiled eggs), chicken, tuna, etc... I think it makes sense since I'm feeling lighter and peppier. But I was sluggish from stomach issues with gluten I believe. So for me not feeling as "full" is a great thing. Countereffect on him I think. I will give the motrin in the am. He isn't swimming for a few days now - rash from someone elses sunscreen so that may help. But I cannot deny him the pool all summer! I did email the nutritionist as well just to ask if there is ANY chance any of the supplements could be having an adverse effect on him. The change in abx was literally today, so I don't think that did it. The biaxin wasn't working for him.

His eyes ARE very red after swimming. But he hasn't complained about them. I didn't ask him bc it would set off a round of "will I go blind" hysteria I did start gluten free. We are on day three. Good question if there is any withdraw? I personally am feeling pretty good myself. Honestly, I feel lighter and just peppier. My stomach feels good. I didn't think you would see any change this soon? I also wonder if any of the supplements we started less than a week ago could be causing a problem? See - I WAS worried about changing so many things at once It could be a regular flare up, he could've been reinfected the past week (since the last titers were done) or it could be the pool, the gluten or the supplements. Sorry, but this just plain SUCKS!!

I did realize that yesterday, he really hadn't had ANYTHING to drink since breakfast - and it was late afternoon! YIKES! I had to tell him to drink water and he downed an entire bottle after arguing that he wasn't thirsty. Won't make that mistake again Scary! He pretty much eats all day long, on the go in smaller amounts, so it didn't seem like a blood sugar issue. I have noticed that though at other times when he was in low eating mode. I may just give him the motrin tomorrow then if he still wakes up moody and see how that goes. I suppose it's certainly worth a try. Feeling SOOOO frustrated here! It just seems like our "superfast" diagnosis is doing nothing to help us

Today has clearly been THE worst day since before my son was diagnosed. He has been "off" all weekend. I figured he was tired from too much fun, and the heat. Today, he woke up after more than 10 hours of sleep (good sleep too!) just in a funk - speaking softly, like it was hard for him to bother. Went to the therapist - first time he'd met her. Well, at least she got a show. No meltdown there, but he did leave to wash his hands twice because he touched toys in her office. He told her he is sad and asked her if he is a good boy She said that he will not answer questions directly about behavior or what is bothering him. He says it just like that "we're NOT going to discuss it". But it was first session, so I figure he needs to get to trust her first. Basically, just meltdown after meltdown since then. Over the MOST ridiculous things. "mom take me to the petstore. I want a new fish". Sorry, we aren't doing that today. "I want the ice cream truck to come!" Like I can control that?! He went full on, screaming, punching himself in the head and legs, thrashing on the floor, etc... I tried to give him motrin before it got to the punching himself stage. He refused it at first (like he always does!) but then did ask to take it. Then it caused another fit - he had to "get the taste" out of his mouth - pulling on his tongue, banging his head, etc... Rational requests that he take the drink/food I was offering to help were only met with more rage. So on the motrin - do you give it just when they seem "off" like you just sense it is going to come? Or do you wait until it's really bad? I just am afraid to give too much, too often. The other thing is, swimming. He's been basically swimming every day for three days several hours a day. I honestly kindof poopooed the whole chlorine thing. I figured he NEEDS that physical outlet and it's something he loves. I know I read that it can increase tics, which I figured wouldn't be a big deal. I have seen an increase in tics the past couple of weeks as well. but was there any evidence that it can cause an increase in other symptoms, like the rage attacks? He just switched from Biaxin to Azith so hoping that we finally found the right one!

I scheduled an appt with rheumatology at CHOP. I've already heard about Dr. Elias and refused to see her

The waking up suggestion is for BEFORE the night terror, so one hour after they fall asleep. The terror always seems to happen 90 minutes into sleep. Something to do with the REM cycle I believe. I only ever woke DS up during a terror when it was just really really bad or the were one on top of another, which happened rarely. that never did seem to help though So glad you had better sleep last night!!!

Please do let us know if he continues to work out! I have an appt with rheumatology at BMS in October. It was a 4 month wait though I'd rather go there than CHOP even though that appt is first, so I'm keeping BMS in my back pocket. If rheum doesn't work out, I can try your doctor.

Hi there. My son, pre pandas even, had terrible horrible night terrors, starting at age 1. He had T&A removal at 3.5 and I do remember a massive peak in his night terrors around that surgery. As if we didn't have enough stress and guilt from it all? I would suggest waking him one hour after he falls asleep to change the sleep cycle. I never did do it myself, but it was recommended to me by many doctors. By the time it was, we had them down to a science and they only lasted a few minutes. However, if he had one and they were REALLY bad, we had him drink a bit of ice cold water, which helped. So you could also try that. Good luck!!