tantrums

Oh the similarities! So I'm wondering if it's the age group or the PANDAS? My son is 6 and also consumed with Pokemon and Superheros. pretty sure that part is "normal" But mine also will spend long periods of time writing their names and creating "books" about them. Now, I or my DH have to write the words in the books for him because he is afraid to write them wrong. Then we have to re read them to him twice so he knows WE wrote the words correctly. If it's wrong, he'll rip it up in a fit of anger. His new thing is and I know this is PANDAS - he HAS to draw one picture of 8 small superheros before bed every night. I mean, I tell him it's bedtime and he will RUN away from me, grab a paper and crayon and go for it. It doesn't matter what they look like or if they are just scribbles, as long as it's done. He can't stop to do anything until those 8 superheros are drawn - last night DH was waiting for him to get in the shower and he ended up waiting quite a while because they had to be done properly. We've come to accept that because it doesn't take very long and at this point, anything I can do to keep peace at bedtime... Always worried about it expanding though

Have a safe and beneficial trip!!! Please let us know how it goes as well. I have his contact info here on my desk. He's only about 2 hours from me. But that insurance situation has me hedging. I know I need to do what's best, but I feel I should try local and in insurance first. I have GREAT insurance and am just having so many problems anymore with doctors that don't take any insurance. Dealing with Chiari and now this is going to break me! I don't like having to decide between getting my brain surgery or having my son taken care of. Of course, my son will come first, but if I don't get my ACM fixed soon, I don't know how well I can care for my son! I'm sorry for the mini hijack here, but I really want to know if it will be worth it!

Making me wonder now if removing my son's tonsils caused this? I often beat myself up over NOT speaking up and refusing to have his tonsils removed. There was no reason for it other than the ENT insisting that they "always" remove the tonsils when they remove the adnoids. His adnoids were ridiculously large and obviously had to go - no question there. He'd never had strep, sore throats, etc... Tonsils were normal size, shape, etc... Okay, I think it's time for me to stop reading and get some sleep. I'm going to what if myself into a sleepless night here

Do we all need to get checked then every time we have a sore throat? I tend to get them a lot, but they typically will go away after a couple of days. What I'm thinking is - my doctor has probably heard of PANDAS, may have researched it between our phone calls (she seems VERY good and invested in her patients spends a LOT of time with us) but may not necessarily know how to prescribe for it. Realistically, we probably aren't going to get this right the first time, are we?

Oh one thing we also find helpful is that my DH and I trade off when WE start to get frustrated. Or rather, BEFORE we start to get frustrated. Of course, if we manage to keep our calm it does help DS a bit more. It has helped me SO much just to know what is going on with him for one thing and it would SURE help if MY DH would understand as well that DS isn't just being difficult. I certainly noticed though, the second my own stress level started to rise, so did DS' and then it was all over.

Oh thanks - I'll try that. I have a really bad gag reflex myself. In fact, my biggest fear is the dentist LOL! So I can relate and I understand that he hates it. It IS a nasty feeling. Now that he is older, before this all started, he was getting better with it. Hoping that reason will still prevail tomorrow and he will cooperate. I'll NEVER forget two years ago when he had strep literally 4 days after my first back surgery and I insisted on going with DH to take him to the doctor. The nurse told DH to hold him and DH just couldn't figure out how to do it. He said he couldn't. He didn't understand they meant - REALLY hold him down. I got up to do it, got on top of the poor kid and the nurse pulled ME off. What a scene! I was back in bed for days after that But when his doctor came in, he let him do it. He was a WONDERFUL doctor and DS loved him!! We moved, that's why we don't see him anymore. He did awesome with the H1N1 swab. He PA was amazed he was able to get it in all the way. I just don't know anymore what we will be able to do - what he will tolerate or what ramifications there will be later. I'm sure you all understand. I'm just getting so nervous!! I mean, the doctor said over the phone, she thought PANDAS was a possibility and to bring him back for the strep testing. But was she just appeasing a frantic mom? Am I going to get in there and get the brush off? I DO still have the allergist next monday and I really feel she is an amazing doctor and I would bet money she would be on board. She's already been saying something isn't right - he has allergic responses yet she cannot find a single thing he is allergic to. She had already alluded to some sort of autoimmune. I'm probably WAY overthinking. Something I've been doing entirely too much of this week. One step at a time. Quick steps, but one step...

I don't have the 504 yet. The teacher and I have just now been discussing getting him assessed and I just looked up the contact info for the school nurse. He went to her office once and got sent home. Since then, he asks quite often to go to the nurses office. The teacher manages to keep him from going, but I am sensing a growing problem there. At this point, he is okay with school. He actually likes going there and I'm trying my hardest to keep it that way.

Oh I will tell him before the appointment! Didn't mean to sound like I was totally going to trick him - Yikes! Just didn't want him stewing on it all night. I will explain it to him once we have some confirmation and concrete info I think. Two weeks ago, the doctor was thinking Lyme or just OCD, so I'm glad I didn't tell him that - KWIM? He never had an overly bad experience with a swab. His first ped was FANTASTIC and was the only one he'd let eventually do it. He will let them do it now, but he will freak out about it anytime he gets sick asking over and over and over. In fact, I wonder how many times he's HAD a sore throat and wouldn't tell me

Erica - you confused me with the name change LOL! Yes, he definitely knows something is wrong! The last thing I need is him coming up with any more ideas! No DH won't be going with me. He thinks he is just fine still - don't get me started on THAT So I will be alone and he is too young to wait outside alone. I think the doctor might also get how critical this is if she realizes I can't even talk in front of him anymore. So many little things popping up nearly every day now - I'd probably forget something anyway if I didn't write it down. I have a wicked sore throat myself - GREAT!! So I have to see if I can get an appointment for myself as well. Wondering if I get a "throat poke" first that will help? I've always tried to do things like that. He had a huge fear of the eye doctor for some reason and I was due as well, so I scheduled us together and I did everything right before him - he sailed through. We also have his allergist next monday and hopefully the neuro soon. Just the amount of appointments is bound to freak him out, which has me nervous. Haven't even tried to fathom how we're going to manage an MRI! I think he will have to be sedated, which we were trying to avoid by putting off the MRI for the Chiari. But I think there are too many questions now and it needs to be done.

We've only just started first grade and having similar problems. I have noticed that if DS makes an error and I point it out, it all goes downhill FAST! I sent links on PANDAS to his teacher last week and she seems very understanding. I think I'm lucky there. I have figured out that I have to pick my battles and learn where the limits are. If he gets to the point where he has shut down - he isn't going to learn anyway, so I stop pushing. We will try to go back to it later or even just a short distraction and back to it. But one paper that should take any child 10 minutes can easily take us an hour - a very DIFFICULT hour at that. When he has H1N1 and missed nearly a week of school, I had to just give up and let him NOT finish the work at all. I'll know for the future (we didn't know about PANDAS at the time) to always get his homework when he misses school so it doesn't build up). So what I do is - figure out what is most important first. Try to set the tone so it's as minimally stressful as possible. Make sure they are not hungry or tired and do it early enough so they don't GET tired. If they have to stop - they have to stop! It's not worth a total meltdown because once that starts, it's not going to happen anyway.

I know that there have been lots of studies as well about the link between enlarged T&A and ADHD/autism spectrum. We were seeing that in our own son when he was 3. Turned out to be sleep apnea, which I believe is the link. The kids are overtired and therefore act out and are hyperactive. They have discovered a LOT of misdiagnosed kids who have the removal and then are just fine. We were questioning our son, who it turned out was not getting nearly enough restorative sleep and was losing his hearing - the adnoids blocked his ears and cause "glue ear". When he had them removed, his behavior improved 1000 fold! I would also think it would limit the strep infections in PANDAS.

So after my doctor agreed over the phone that PANDAS is probably what we are dealing with, tomorrow is my DS appointment for strep testing. I was under the impression that the doctor plans a throat swab. I understand to not just accept a rapid test, but to ask for a culture, right? Now, I also want blood testing, right? What is it exactly that I need to have drawn just in case the doctor doesn't know for sure? And some advice on how to handle this with DS - he is 6. Before all of this even started, he was obsessed with the "throat poke". That was ONE thing he would never let the doctor do. It used to take 4 people to hold him down to get a strep test - really awful. So every since he was small, any time he went to the doctor for anything, he would ask constantly, "are they going to poke my throat?". I only told him tonight about the appointment. He of course asked and I just said "I dont' know". It's the first time I ever lied, but something told me there would be NO sleep tonight in this house if I told him in advance. I dont' like lying to him, but I also dont' want to cause more stress to him. And knowing this is probably something he will see ALOT of now makes me feel awful And meds - I understand I want to ask for at least a month, right? Azithromiacin seems to be the best course from what I'm reading? Either that or augmentin, but he had augmentin when he had "glue ear" and it was AWFUL!! I have it marked on his chart that he is never to take that again. Painful, awful diarreah, yeast diaper rash and eventually bloody diarreah, which was when I ended it. There is NO WAY he can take that long term. And in the past two weeks since we saw the doctor, so many new tics, obsessions and behaviors have popped up. But I don't want to go into all of it right in front of him. He's starting to question himself what is wrong with him. And his biggest obsession is that he is going to die or have something wrong with him. I'm thinking it best if I write a list and hand it to the doctor. Does that sound reasonable? I figure that way I also am less likely to forget something.

Hi! I'm pretty much right where you are. My son had H1N1 in the beginning of October and has very similar symptoms, although he is also raging and getting worse nearly by the day. We did not have a strep test since he wasn't showing signs of clear strep at the time, just typical flu, but the H1N1 did linger for several weeks. Maybe strep was just missed? We are going tomorrow for the strep testing. I know how you feel! You are NOT crazy and neither is your child!

Hi Stephanie! So sorry you are also dealing with both disorders. What a nightmare, huh? I had originally thought the ACM would be on the back burner, but in my research this weekend, I'm also wondering if there is a link. I think you may be onto something with the pressure. My first step will be the ped neuro I suppose, but you probably know, finding someone who can help with BOTH of these situations is going to be very very hard! I also don't know where Carter stands at all with ACM, he may not even have it at all, but has started complaining of the skull based headaches and feeling "off balance" and he is a clutz, so I figured it was time to find out.

My son is 6 and we are definitely seeing the rages and meltdowns! The first one was about 2 weeks ago (well the first major one!). We have a comm. log with the teacher. If he has a "good day" at school - he can play computer for 20 minutes. Well he didn't so no computer. He literally dropped to the ground, ripped his clothes off and flailed around screaming bloody murder. He wouldn't stop. My husband told him if he didn't stop - there would be no TV. He didn't stop, so no TV for the night. He carried on for TWO HOURS! At one point, he was in his bed and called to me calmly so I went in. He said to me "Don't ever say that to me again." I asked what. "Don't you EVER tell me I can't watch TV". He said it so mean with such hate in his eyes that it was scary. I stayed calm, told him I was not going to fight with him and walked out. The screaming commenced again. It was the most disturbing episode I've seen. Then friday, he came home from school in a rage because he couldn't find his money for the holiday shop. Granted, to be the only kid there without it must have been awful! I'd told him it was in the front of his bookbag - even showed him in the morning. Well, it was full on "I HATE YOU! I wish you would die". Then he picked up his light sabers, threw one at me and said "fight me mom! Fight me!". Those were extreme. Mainly, it's typical (well typical if he were THREE), dropping to the ground and flailing and kicking and screaming for a few minutes. But he will perseverate for quite a while on whatever the issue was. He will also run into his room and slam the door and throw things. Between the hateful words and the screaming, he has the saddest look in his eyes - like he is scaring himself So hard to see!

My son had his fourth MMR in August and this did start for us shortly afterwards. However, he had strep in July (right before this all began here) and H1N1 in October, when it really got bad. So I really can't say if it was the vaccine. I do tend to believe it was the other illnesses and the timing was just bad.

My son has always gotten very edgy and physically spastic with benadryl - only right after dosing though. If I gave it to him at night, night terrors and thrashing around in his sleep were awful! One time he slammed his head so hard on the headboard that he had a bruise. Claritin made him terribly physically aggressive. Quite scary actually. I think they are different ingredients though?

Anyone do "refusal to blow nose?" That's one in my house - My son does, but I thought that was pretty normal for a six year old? However, I also thought it was normal for a six year old to refuse to eat any food that is "broken". Now I'm thinking he probably should have stopped worrying about that a couple of years ago? Example - a bowl of cheez-its, he will actually go through and pick out any with broken off corners or cracks in them and throw them away. Also - I gave him a pop tart the other day that had a small hole in the back - he freaked out on me like I'd handed him moldy food

What absolutely beautiful children!!!

Good morning! Or rather afternoon, but first chance I've had to get on the computer today. I'm actually a state of NJ Caseworker for people with Developmental Disabilities, so I am familiar somewhat with the IEP process. Most of my caseload is adults though, so I still do have much to learn. I guess my concern was if he is in a "flare up' then he could be improperly assessed. Although, in thinking about it, might be better off to have him assessed at his worst as they (the school) would need preperations in place to work with him in the future when he is like this. Yes, he has had strep. Twice that I know of in the past year. He never presented with a sore throat, which is what worries me. Wonder how many more times we could have missed it? And to boot - one of his biggest fears has ALWAYS been the "throat poke" so I wonder if he wouldn't even tell me? He always presented in the past with croup and in looking at his throat - they would see the strep it was so bad (or the inflamed, red throat rather and then test). since so many kids with H1N1 got secondary infections and we seemed to sail through without, yet his behavior has been abysmal since, I wonder if we really DID sail through that? Yes, I had Scarlet Fever as a child. I've read links around on that and still trying to figure out exactly what that means. and I was just in the process of trying to determine if Carter had Chiari, which sadly, it is very likely that he does. I'm just feeling like this poor kid got handed the short stick genetically speaking

I just read the Signs of OCD in a young child thread and Wow! I guess I didn't understand OCD as much as I thought I did. And I'm a social worker?! Yes, okay - that IS him. The fear of being apart from me, constant peeing (that one has baffled me for over a year now!) and a few others - I just didn't reckognize them as OCD symptoms. The fears I did know where, but when I filled out an OCD scale I found at my office, I got nearly no score on it. Maybe I need to revisit that with my new information. But for now, I think I need to rest my mind and body and get some sleep.

Thank you! I am so overwhelmed, yet somewhat relieved by what I have been reading here the past couple of days. Relieved I guess that even though I am seeing more and more that my son definitely DOES certainly have even more symptoms than I had thought, relieved that I am obviously not alone and able to get the advice and understanding of so many other parents. What on earth DID we do before the internet??

No - he's not on antibiotics yet. When we went to the doctor last week, we had NO idea PANDAS even existed and the doctor hadn't mentioned it. she did regular bloodwork and Lyme titers. Actually, there was a resident there with her, and I do think he mentioned it, but I didn't give it a thought since I was stuck on Lyme and Chiari at that point. But we've been on the phone three times this week with the doctor and her PA. Have another appointment wednesday for strep testing as she does think PANDAS is the diagnosis. I'm not sure if she will RX the antibiotics without the strep test results though. I'm hoping so at this point, because he is escalating on nearly a daily basis at this point. I know! I feel so bad because I feel like I'm always pushing him away and that is so sad! I was actually supposed to have a spinal fusion next week, but put it off partly so I could get him taken care of. So I will be having it on January 11th. So my being in awful pain does NOT help in dealing with him. My nerves (physically that is ) are shot and having him rubbing on me, pushing me and kicking me is 10X worse than it would be normally. And then, I'm just generally in pain and exhausted. Not to mention, him knowing that I'm not well I'm sure does not help his anxiety levels. I shudder to think how he will be when I'm in the hospital. NOt sure yet if having him visit me will help or hurt - although I think they are still not allowing kids in the hospitals due to H1N1. I'm going to have to ask my doctor. Carter actually LOOKS stressed when he is hugging me, as if he is anticipating me pushing him away. I would NEVER deny a hug - it's the part where he slams his head into me afterwards that is the problem So - for right now, we will be limited as to what I can accomplish with doctors sadly. My husband is not exactly on board with this. As soon as the word psychiatrist is mentioned, suddenly he feels there is NOTHING wrong with Carter and I'm over reacting. As of January 11th, I'll be totally out of commission for a few weeks and then unable to drive for 2 months. I will have support from my mom. I also have a good friend who is actually a child behaviorist and I'm sure she will help me with getting him to any appointments I can make. So my plan now is to follow up with the pediatrician on wednesday. Then we happen to have an appt with his allergist on the 14th and she is WONDERFUL! I'm confident she will be a help. I'm also going to ask for a referral to the specialist group out of our local hospital, which is very good. The pediatric specialist group has a neurologist, psychiatrist, hematologist and rheumatologist all in one place. I think if they are knowledgeable on this, the set up could be fabulous! It is good and bad that I have dealt with Chiari Malformation for years. It is similar in that it's something that many doctors either don't know about, or don't acknowledge. I've learned all to well how to advocate and navigate in the medical system and to push to find the right doctors. I had to do that for myself for a long time until I learned what I had and where I stand and how to get the right treatment. Now it shouldn't take me quite as long to figure that out for my child.

Hello and welcome. Some random thoughts for you.... My 8 yr old dd has OCD tendencies and a a complete slob. She becomes totally overwhelmed when needing to organize anything. Seems pretty ADHD to me. Her seat in the car is always filled with junk. She's a slob when eating, crafts, anything. She desperately wants order though but has no idea how to help herself to achieve it. My other daughter is more agressive and always hanging on me, pulling on me, kicking, feet in my face... her feet are always a problem it seems. Good luck with it all and I'm glad you have found us. Susan Oh Susan - that sounds SO much like it is here! I'm so happy to have found this group! I always feel like I'm constantly complaining about my child being "on me" and it's not a good feeling. It's not that I don't enjoy him, or don't want him to cuddle me - it's just excessive and in a rough way that makes it unpleasant. Sounds like you understand

I just thought of another question I need to figure out pretty quickly. Where does this leave us with school? My son is literally failing first grade. He does well in match, but everything else is an absolute failing grade. The teacher already has him in a "preintervention" program but it's not helping much. We've discussed having him assessed for special education services, but both she and I feel that it may not be the right move. I love that I have a teacher for my son who seems to know that this doesn't seem "typical". He obviously does have the intelligence, yet he just WON'T do the work due to fear of it being wrong. Would this fall under an ED classification? That sortof bothers me to be honest - especially since it can hopefully be treated and have some better periods. Yet - the bottom line is - the child IS failing first grade and badly. He will probably have to repeat as it is. So special ed services may be warranted for whatever reason to help him succeed, right? I should add - he is actually doing well socially with no issues. He is actually the class clown. He plays with boys and girls alike. Also in his aftercare, he plays with different age groups with no problem. Guess we are pretty lucky there.