tantrums

My son is in 2nd grade. I asked that he be held back last year, but they would NOT do it. His teacher last year, when all of this started was WONDERFUL - a great advocate for us, very understanding and a great communicator. She recommended the 2nd grade teacher he has now. I am less than thrilled. We started with a 504 this year, but honestly, it doesn't seem to be doing a dang thing. When we first met, the 1st grade teacher said at the meeting (she was included) that a communication book was very effective. I asked for this again and this teacher flat out refused to do it. She said she uses the homework notebook to communicate and we can do that. Sounded ok at the time so I agreed. However, then I realized how this book works. First of all - the KIDS write the assignments in the book on the correct date. Let me just say - there are scattered dates throughout the year with various assignments filled in. He writes anywhere he sees an empty page. I have tried writing notes in it and get no response. So - I email. In response to email every single time I get "He NEVER poses any problem to me in class. We have absolutely no issue with him." She even said to me in a conference that he respects her too much to be disrespectful to her. WTF??!! Really? Kindof insulting if you ask me! I told her he wants to use a pen on his homework. He has for some reason decided he writes better with a pen - and oddly he does. She said no! then the other kids will want to do it, he has to use a pencil. Excuse me, but isn't that the kind of accomidation a 504 is for? He has a fear of putting holes in the paper with pencils. I've observed him in class and he was a mess. Yes, could've been bc he knew I was there. But, the guidance counselor who I don't have much faith in either, said he almost called me one day bc he was so concerned after an observation. But when he went back later, DS was calmer so he felt it was ok. The school psychologist is FANTASTIC as is the principal. This weekend, I got a BIG stack of classwork sent home with a note that says she just found these hidden in his desk and to please complete them at home. So if he's so PERFECT for her, why is he hiding work in his desk? And why wouldn't she listen when I said he will do this and check earlier in the year? And she KNOWS homework is ###### for us! So obviously, this all sounds like a call to the principle is in order. But here is the dilemna... DS LOVES her! she has a cool sense of humor and he relates to her very well. Academically he is doing better than I had ever thought he would this year. He is happy to go to school every day and wants to please her. So, would you grin and bear it since he IS performing well at school and happy there? Or would you make a call and complain?

Don't feel bad. I deal with it all the time and I hear ya. I deal with the aftermath when the kids in placement DON'T get the proper treatment and it makes me nuts. My standard is always "would YOU let that go if it were yourself or your child". If no, then you do what you have to do to get the tests/treatment. That's why we have papoose boards. While not pleasant, neither is a festering infection or a terrible pain that they can't verbalize!

I just yelled at my DH this weekend that I'm fed up with being the referee! That would be the referee between him, a 45 year old man, and our 7 year old! I feel like I'm always trying to keep the peace so I don't have to deal with the fallout! My DH says he gets it - he will say DS has PANDAS and has even suggested to a few others he knows they get their kids checked. But then, he will say when anyone asks "oh he's doing MUCH better!" REALLY? What kid are YOU living with??? Did you NOT see him throw the tv remote at my face last night or have the 2 hour screaming fit or punch me in the back? Do you not hear him say he wants to kill himself with a knife and not live anymore? Oh probably not because you were busy yelling at HIM at the time that he'd better calm down or your taking away his DS, sending him to his room, grounding him, etc... All while mommy is in the kitchen popping an ativan bc rule number one is we do NOT contradict each other in front of the child. May have to reassess that rule! We are FINALLY all set up for in home wrap around services. My DH gave me all of the info for the medicaid application, helped me fill it out, asks when the next psych appt is, etc... Then when I tell him we FINALLY have it set up - he doesn't want someone in the house working with us because we are FINE! As if I never told him about it and suddenly introduced him to the workers when they arrived. I should also mention, our coordinator is one of my best friends, who he knows very well! He would sure as heck never throw ME out - he'd never be able to handle any of it without me. But I tell ya - I fantasize about packing up his shite and throwing it out. Sometimes it feels like my life would be a lot easier if I didn't have to deal with his feelings as well. He means well, he's not a bad dad. I'm just so drained from dealing with DS that I don't have time/energy to consider anyone elses feelings and I don't want to hear what I "should have done" in the situation.

Also made me think instantly of night terrors. My son had them consistently from age 1 to about 5. They were the worst in the beginning when we didn't know what to do or how to handle them. All you can do is watch and make sure he doesn't get hurt. Talking, offering a bottle, etc... will only make it worse and last longer. It is VERY hard to watch, especially when they are calling for you seemingly unaware that you are right there with them, but they will remember nothing of it after its over.

Cons to steroids - for us anyway (my DS also had chronic croup as an infant/toddler and was on orapred ALOT), ruins the coating of the teeth discoloring the adult teeth. My DS also reacts very badly to steroids - they make his rages and inability to handle things much much worse. Dr. feels this is "just him" and is not an indicator of how he would react to IVIG since he has always responded this way to them.

I personally DO believe this theory that there can be permenent damage caused. I for the life of me cannot remember who it was that explained it well - that the behavior becomes learned after a period of time due to the neurological effects? My DS has a cousin who also has PANDAS. There is another relative who had similar symptoms as a child but was not diagnosed with PANDAS and therefore not treated. He has led a very difficult life thus far with rehabs, drug use and jail. It scares the heck out of me! Especially since we can't seem to find an effective treatment for my DS. Also, as a social worker for kids/adults with developmental disabilities, I have been looking into this on my case load. Now of course, none of the adults have/had any PANDAS DX, but I am finding many kids with the DX and a few I have requested they have titers tested. One came up high! Hard to tell since these are kids with severe disabilities to begin with so no - I don't think PANDAS caused it, but it's interesting to wonder how much they will be helped by treating the pandas and where the overlap is. I'm thinking it could be as simple as non verbal children not being able to articulate symptoms of illness and therfore infections going untreated.

What I find odd with my son is, he did this WAY before he ever had an exacerbation. When he was 3,4, 5... at times he would go through periods of having to go constantly. Now, he didn't toilet train until he was well over 4 so I'm sure the ages 3-4 had partly to do with the "exploring public bathrooms" but after that - there were tiimes I took him to the doctor insisting he must have a bladder infection. That was part of what jumped out at me when a coworker suggested PANDAS and I looked at the list of symptoms. So I don't understand why he would exibit that ONE symptom (and it was very significant, not just a fluke) for years prior to actually having PANDAS.

Not here. And my son was DX with tourettes by three different doctors initially.

H1N1 did a number on us. It was actually when DS was first symptomatic. Although, the doctors aren't sure because he did have a postive strep culture about a month later. The understanding is that most people who had issues iwth H1N1 actually caught a secondary infection - so it could've been that he got strep right after.

Waiting on a phone call from the immunologist to explain the test results. She did ANA and a whole heap of other tests. The took 12 vials, which was a mistake to do at once! She does feel though that she will have some sort of answer in there - and there were a few things flagged that she had suggested she was "hoping" might be so that she can get approval for IVIG. She feels IVIG will reset his immune system enough that he could try abx again. But she said she wouldn't touch ABX with him unless he's in a hospital at this point.

I think it's like the scooter/wheelchair lines - or maybe they just let you in the fast pass? When we went a few years ago, my mom was in a scooter. I was so embarassed at first, but got to appreciate it REAL quick! We went to a seperate entrance. I noticed a few group homes with us at times - one lady having a total fit. Since I oversee GH's for the state, I can usually tell a group like that. So I'm hoping that's what it is. Although waiting in a seperate, more peaceful area is fine as well. As I read somewhere else... I'd gladly take a healthy happy child and an hour long wait over a chance to shorten my wait time at Disney

Yup - exactly what I'm saying. Scary concept, huh?

Serum sickness is an autoimmune response to a substance, usually a medication. In our case, Carter started with hives that got really bad. Then his feet swelled. We were on vacation and he had just eaten lobster for the first time ever. Went to the ER there and they just said to continue benadryl. We got home the next day and his hands were so swollen he couldn't move them. The hives were much much worse too. They gave him an epi shot and steroids. but they still said it was the lobster. Went to the allergist who did skin and blood testing for all shellfish. All came up negative. Now we had decided to stop doing long term ABX while on the trip so nothing more was thought of it. Then we did the Cunningham test and he came in at 169. Sooooo back to long term ABX. A week later - hives. Stopped the Zithromax right away. Hives went away. Then went back to Omnicef which is what he had in Maine. He got bad hives, then his feet swelled. Got steroids. Then the hives continued to get worse and his elbows swelled. Then out of the blue, he looked like he had been hit by a car! He was covered in black and blues so bad I couldn't help but panic and let him see it. We went to the ER and vasculities was diagnosed. It was diagnosed as serum sickness after the fact. Each episode gets more severe from what I'm told and we now have an epi pen as well.

urticaria is hives We've had similar experiences with DS in the past year. NO allergy test shows an actual allergy. Then we discovered it was actually serum sickness from antibiotics We thought he was allergic to shellfish when that happened in Maine. Nope - shellfish all fine! Our immuno says it's just the really messed up immune system getting confused What makes it scary is it's hard to know what if anything is actually causing an allergic response and when it might happen.

Ah! Forgot about the tourettes DX. Have that one too They DO ask for a drs note. Doesn't sound like anything really major though - just a note. I don't have a problem with that.

Looks like we are going to go to Disney in April when DS7 has spring break with our neighbors/best friends. I am really worried about the crowds and lines. Waiting for ANYTHING is just not something he can do right now. He also has sensory defensiveness and has been known to punch anyone who touches his wrong. I know about the guest assistance passes that anyone with autism can get so they don't have to wait in the full line. I was just looking it up and saw they will consider ANY disability. We do have an Aspergers diagnosis, but I KNOW it's inaccurate so I would feel really bad "using" that. Has anyone here gone to disney and gotten the pass? I'm wondering if anyone actually said PANDAS and got one. We have a host of DX to choose from... PANDAS Asperger's Sensory defensiveness OOD OCD Intermittent Explosive Disorder ADHD

I'm sorry you're having such a hard time. I remember that disappointment. My son has been known as "steroid boy" since he was a toddler. He had chronic croup and was on orapred up to 10 times a year for a few years. It was really really bad! I had hoped he would do better since the croup is no longer an issue. He was not. It was terrible! I was so disheartened. BUT - I was told that could just be him, a normal reaction that he will always have to steroids since we have seen it in the past. It doesn't necessarily exclude IVIG. I had written IVIG off at that point due to his reaction and the insurance denial. But now my son has had serum sickness from two different classes of antibiotics and I have 6 doctors saying the only option we have is IVIG. Case manager from the insurance company also agrees and is working on approval for us. Have you ever taken steroids? I did a couple of times in the past three years. They DO make you feel just terrible!! I was ready to start throwing furnature!

I wonder... I have thought that if I had all the bloodwork DS has had, I'm sure I'd have the same immune deficiency. I've just always been on that gets EVERYTHING that may be going around. I'd also like to forget my teens and even more sure my parents would I was seriously depressed and attemped suicide several times. I was also a cutter. Oddly - I 'grew out" of it all around age 18.

Our immunologist ran a LOT of bloodwork on DS7. I got the results in the mail today and am waiting on the call from her to explain, but of course I am googling and unlike the last few times, I cannot seem to find out what this means. His Lymphocyte subset profile %CD4 is high at 48 (range is 31-47) and the absolute is 1605 (normal is 650-1500) Also his pneumococcal antibody Serotype 19F is 23.9 when it states it should be less than 16 and isoagglutinin titer Anti-A titer is 8 anti-B titer is 4 The only thing I did find is that kids with an O negative bloodtype should have Anti-A titer. Doesn't say what having both means. If anyone has a clue on any of these - I'd appreciate it~

Thank you. He luckily fell asleep very quickly. So I am hoping that part of it was being overtired. He also is NOT eating lately except for pretzels. He has lost 4 pounds (only weighs 45 so that was a lot!) and I think it's dragging his energy down too.

Oh I've got to get that vinyl strep one with the swab! My DS would probably LOVE getting to stick that thing in someone or something elses throat!!

My heart is so heavy tonight - when we should be excited and happy! For a few weeks now, DS7 has been asking a lot if he will be on the "good list". We have reassured him he is. We have minimized Santa threats - although I can't say I'm completely innocent of reminding him that Santa is watching Tonight - he has completely lost it and it's got me so depressed! He recently has begun periods of crying - sobbing really - for hours with little known reason. We were at our neighbors and his best friends and he suddenly got "that look" in his face and fell to the ground, refusing to speak. He tried to smash his gift on the road on the way home. He is in bed now, not speaking and just crying. He doesn't want me there when I try to comfort him no matter how hard I try to approach him quietly and calmly. He did say that Santa isn't coming because he is bad. He wouldn't put the cookies out or say goodbye to his Magic Elf (who he adores!). I was already afraid for the meltdown in the morning. You know - the one where he suddenly realized one toy he wanted and didn't get. Now I just want to forget Christmas altogether! I do so hope everyone else is having a better time!

Funny thing is... This is the second year I'm not even sending cards in general. JUST to the docs! LOL!

Thank you

Does anyone have the address handy for Dr Cunningham? I have a Christmas Card ready to send to her and her staff and I can't seem to find the address. I found a couple different ones online and I want to make sure I send it to the right place. Thanks! And thanks again to whoever had this idea. Sending one to Dr. T as well