tantrums

My DS is 6. He is VERY close to my parents. Part of his OCD is fear of people being sick and dying. My mother is currently in ICU with a brain hemmorage and blood clots in her lungs. He was supposed to go to their house this weekend. His birthday is in two weeks. Also, Tball will be ending and due to her being ill, she hasn't made it to any games and won't. She should be okay. Honestly, I can't even think of the alternative myself right now. It's not good for sure, but she is only 68. Not really in good health overall, but receiving good care. She should be in the hospital at least 2 weeks and then going to rehab for a couple of months they are projecting. Carter is going to notice her missing from all of these events. He luckily forgot he was supposed to got there this weekend as we told him he was going with us to a concert on Saturday and he is excited. But my dad is going to come to Tball alone - he will notice. And to not have her at his birthday, he will know something is wrong. My mother said today we need to "make up a story" to tell him. Granted, she is a little foggy right now. But then, I wonder - is she NOT that far off base? I don't know what to say, so I have not told him anything. I can't exactly just not tell him anything for months or he is likely to assume she is dead in his mind. He has done that with other, various relatives and had major freak outs over it. I hope to get away with "grandma isn't feeling well right now" and leave it at that. But he's a persistent little bugger Any suggestions? Has anyone been in a situation anything like this? Oh and she also has MRSA so even if I thought it might be a good idea, I dont' think visiting her would be feasible.

My son also is extremely sweaty. However, I will say, he has been like that pretty much since birth. I don't see it being any different since pandas came around. But I often have to actually completely change him in the middle of the night, or more often, when I'm going to bed, because he is soaked completely. Sometimes I wonder why I bother showering the poor child What about "sick smell"? That is also something he has always had, but when he is sick, he stinks! An odd sort of BO type odor, but he is only 6!

LOL!!! I've been saying that for months! If I have to deal with OCD, can I PULEEZE have just a touch of the cleaning compulsion? Of course, I say that as someone who has obviously NOT dealt with it. I'm sure if I had a child with it to the extreme, it would be equally upsetting Ooohh!! Be careful what you wish for! The OCD cleanliness thing can be a slippery slope! Not to mention, frankly, it can result in the kids being wary of touching things that may be dirty/contaminated, or setting them to ordering or lining up possessions, but it really (unfortunately) doesn't manifest in them being "cleaning freaks." Mostly, they just want to make sure YOU'RE keeping everything clean on their behalf ("Mom, what's that speck on the kitchen floor? Is that mud?") Now, I do recall that, as a toddler, the vacuum was DS's best friend! He LOVED that thing! Loved using it, riding it! I had the best vacuumed house in three counties!! But I honestly think that was a sensory thing at that point, as opposed to an OCD thing. I can see that. My DS wouldn't clean anything himself, rather scream at ME to clean it anyway His latest obsession is poison "is that poison? Did I touch poison?" and anything that is different in the house can freak him out. He had a brief handwashing stint recently which resulted in soap all over the counters, handtowels on the floor, etc... I'm sure if he vacuumed, he'd break it

LOL!!! I've been saying that for months! If I have to deal with OCD, can I PULEEZE have just a touch of the cleaning compulsion? Of course, I say that as someone who has obviously NOT dealt with it. I'm sure if I had a child with it to the extreme, it would be equally upsetting

I did wait until we had the diagnosis from two doctors, but then I just casually brought it up as he was taking his ABX and asked why. You take this because you have PANDAS, PANDAS is why you feel bad sometimes and we hope this will help. Seemed okay enough for him so we have left it at that for now.

I was also wondering if your child is taking any allergy medicine. Interesting to see others comment on the Claritin! Long ago, before any PANDAS or behavioral issues, my son began seasonal allergy issues and the doctor recommended Claritin. Within hours of the first dose, he literally began screaming and throwing things! it was very disturbing! Needless to say, we never used Claritin again. He did better with Zyrtec, but is now on astepro nasal spray which he does well with. The immunologist was going to RX singular (I think that's what it was anyway) but did say that she really was hesistant to try that because it is known to cause sleep disturbance and we already have huge issues in that area including bad night terrors and sleep walking. In fact, when I first saw her when the PANDAS appeared, she told me she instantly checked the chart in a panic to make sure she HADN'T prescribed that and caused this. I found that interesting. We did fine with the allergy testing, but that was almost a year before his first PANDAS episode appeared so probably didn't apply to us.

My DS6 is just one long, wild path of destruction. I don't mean he is purposely breaking things, but OMG it just never stops! He breaks, spills, stomps, colors on, etc... everything in his path! I don't want to read too much into it, as my DH thinks I do. How much is average 6 year old and how much is PANDAS? Is it the ADHD aspect? He didn't do this before he started with PANDAS this past fall though. For instance, in the past half hour... Got a drink, drank half, went to put cup on counter and missed with cup hitting floor. Spilled half of contents on floor and just ran off leaving it there. Had an ice pop and just threw stick on counter, also missing - Oh well... Went on bike for a 5 minute ride. He'd had me tape on a wind catcher, which broke as soon as he started riding - small meltdown. Ripped off the tape tearing off the stickers from the bike. Threw bike down on sidewalk ripping back of seat cushion. Mind you, I bought this bike LAST WEEK! Wanted a piece of gum from one of those you put in your car cupholder. He opened it and ripped the entire top right off so the hinge no longer is attached and the lid doesn't stay on. Forgot the spilled drink and got a juice box. Rammed straw in so hard, it squirted all over a chair. Not to mention, during all of this, my DH came in from cutting the grass, took his work sneaks off and spewed cut grass all over my kitchen floor. And then looks at me as if wondering what my problem is So that gives you an example of what I mean here. In addition, DS has this thing with coloring on his belongings with crayons. I mean, they are his toys so I suppose I shouldn't care, but I'm tired of his action figures have no heads, being covered in scribbles, etc... He climbs on furniture causing rips and stains, gets a new board game and promptly tears it in half or breaks pieces just by opening it, etc... He is messier eating than when he was one! There is food all over the place and I have resorted to placing his drink near me or it will inevitably get spilled by an arm flinging it to the ground. The worst part of it really is though. It upsets him sometimes. He will just cry out "I break EVERYTHING I touch" and sometimes even hit himself in the head. So no matter how much I get annoyed with it - that even makes it worse

I also had a really hard time with my mother. Of course her first grandson couldn't have something wrong. I should've fixed it if it was you know!! She was in denial, it was all my fault - until as someone else said, she had him for a weekend. My father had the audacity to not buy him two happy meal toys (which he has done in the past for some reason) and DS screamed and wouldn't leave McD's. I think most other people just don't get it. But I'm not going to stop telling people it's PANDAS. The more it gets out, the more people will understand sometime. in the meantime, all we can do is hang in there. I sure have meltdowns myself. I miss the days right after my spinal surgery in January where NOTHING was expected of me and everything was done for me. How sad is that?

I'm not in the philly area exactly, but obviously I'm going to have to travel in some direction. I am in Lehigh Valley - Bethlehem. I actually requested neuro or rheumatologist at CHOP. I did the online request, which seemed to work better than calling. when I called, they just shot me into the neuro message system. Online, I was able to explain symptoms and say I didn't know which specialty I wanted.

The first episode, in December, he had a neg. rapid but a pos. culture. When he started to flare again in February, both were negative. No number on the dnase I'm looking at CHOP now. Anyone know about them there?

His first episode was this fall, sadly December by the time I realized there was a serious problem. He was totally out of control at that time with rages, wouldn't sleep, tics were growing by the day. He was put on ABX at that time and responded well. Was referred to neuro who said it's just TS and wouldn't do long term ABX. Ped wasn't amused and after he started to flare again about a month off, she agreed to do long term ABX for us. It has been about 2 months and I haven't seen the rapid improvement I saw last time. Granted, he also didn't escalate to the extreme that he had. I have to say, tics are very minimal. Rages aren't very bad. Just mostly mood liability, whines constantly and OCD behaviors. It just hasn't seemed to be changed at all in the past month. It would have been so helpful to have bloodwork done the first time (decemeber) and then again in February/March so we knew the response. I think you are probably right, it's hard to know much from one level However, this DOES answer my question from the other day of "could this just be TS?". Guess not and I think it is time for me to see one of the specialists.

I got results from bloodwork done 6 weeks into the second course of ABX. Doctor said she wishes she had done them sooner, but this is when we got them. My ped is working with me, she is learning herself, so I can't fault her. So anyway, we have ASO is 230 and Dnase is highly elevated Should I ask for the doctor to try another antibiotic? He is on amoxi now. Has had problems (GI SEVERE) with others in the past, so it conerns me. But after 6 weeks, shouldn't the Dnase be down? And no wonder he is still acting the way he is

Thanks Mom - I'll look for that book. School is SUCH a struggle. I honestly didn't expect that. He sailed through Kindergarten and was doing so well. I didn't expect him to be failing first grade And the Child Study Team is kindof looking at me like I have three heads with this PANDAS diagnosis. I find it so odd that NO kid in the school every had it?? Of course, I did use the TS diagnosis to our advantage if that will get him help. I should mention, he had chronic croup when he was younger. Steroids were NOT our friend. We would call him "steroid boy". It was never a pretty thing I fear steroids. The thought of a steroid burst makes me cringe!! That sounds much more intense than inhaled steroids or a 5 day orapred dose. But then, could it be worse than the rage attacks and bad attitude we see now anyway? I'm going to look into having the Cunningham test done. And I'm going to look into the other doctors mentioned. I did just return to work after 4 months disability myself, so honestly, finances are not very good right now. I have to recoup a bit financially. I can't get over all of these doctors nowadays that don't take insurance!! I have the same issue with the good doctors for my Chiari Malformation so I now how to navigate it at least. But it adds up!!!! And now with two of us Not to mention, I am still afraid DS has it as well. STILL need to get that checked out. That's yet another "unfavorable" diagnosis that doctors don't like to consider

I did do a plan once with someone who had developed a major anxiety issue and agoraphobia. But he LOVED Burger kIng. It was very step by step. Day one, he would go to BK but got to eat it in the van. We did that several times... Then, he had to open the van door to get it (but eat in the van), After a few times of that, he had to step out of the van to get the food. Then step 10 feet away from van to get food, go back into van to eat. Then - go to BK door to retrieve food, then back to van. Then inside BK to get food, back to van. Then in line to get food but back out to eat. Then in line, get food eat inside. It was a VERY VERY proud moment. This was a person who hadn't left his home in years. It took maybe a couple of months for the process. Of course, we had an obvious reward there. Not sure what a good reward would be at the school? Silly bands if child goes inside? Silly band for every 15 minutes spent inside? I use that example bc it worked. We also adapted that plan to other places and now that individual goes everywhere without rewards. Quality of life is greatly iimproved. I wonder if that type of step by step, a little at a time, procedure might help with a school phobic child? let them get comfortable with each step before moving forward.

I am REALLY starting to wish I knew more about my family background. I was adopted as an infant and have no information. I have no TS, OCD or the like, but did have some severe depression as a teenager. I also did have a learning disability, which I think my son may have. There seems to be a major disconnect in his learning, similar to what I had and he has problems retaining certain info while he has a brilliant memory. I tested with a 148 IQ yet I have trouble with his first grade math homework, can no longer speak french (used to be fluent) and can no longer play a guitar, which I was very good at. But English, I excelled at always. My son is the opposite though, which I find interesting. He is AMAZING at math and the arts while he cannot get the concepts of reading or writing. My husbands family, all I know is there was a lot of illiteracy, but they are an odd bunch so honestly, I'll never know exactly what the true issue is/was. He has a much older brother who is completely illiterate. There must be some problem there. And I do believe his brother has some OCD issues - he hoards and has severe social anxieties. My MIL was an EXTREMELY anxious woman. So aside from not knowing my own genetic makeup, I'm thinking there is enough there to base something on. However, if you delve into any family, I'm thinking you will find similar. I really was blown away though reading about TS! My husband was even more informed. His main thoughts on TS were people had to yell out swear words in order to have TS. I could use some more support from my DH on this one. He basically doesn't want to believe anything is wrong, that DS is a normal kid who is a bit hyperactive and oversensitive and that he'll eventually calm down and "get it". So I'm fighting against him in trying to find help here.

I have not had this situation yet, but I tell you I fear it to my very core!! I have dealt with school phobic kids at work both with my CPS job and my Developemental Disabilities job. I can honestly tell you - we never found a good solution, or one that truly works to everyone's advantage Being a case manager and sending in behaviorists, provider respite agencies, etc... we've tried all sorts of solutions from having someone else transport the child to the parent going and staying at school. And of course, I've seen uncaring/unknowing school districts take parents to court for non attendance of the children That said, I wish you ALL THE BEST that this too "shall pass" eventually. In the meantime, just please don't give up trying whatever course you take. If you want your child back at school, even if home schooling, I would continue to try activities at the school so it doesn't become a totally foreign place. But I did want to add, picking up screaming child and carrying them in... was always the WORST result

CP - I think this is what threw me. Not from my own personal experience, but that of a social worker, my job. I work with adults and kids with developmental disabilities. I had my own impression of TS and that was that it was "just tics". I was SOOOO wrong. That is why I blew off what the neurologist said initially. But I did read all of the handouts he gave me, and then more. OCD, rage, ADHD, etc... are all common with TS as well. If PANDAS was in the DSM, I bet they would be nearly identical. The one interesting factor in the TS literature was that most of it does say to rule out strep as a cause. I'm not completely opposed to treating my son with TS meds if warranted, but I can tell he just isn't quite at that point yet. And of course, I don't want to mistreat, or rather NOT treat, strep leading to further damage. I'm also so desperately trying to find some behavioral help, but EVERYONE doesn't treat kids this young, has wait lists months long, etc... I work for one state and live in another. I know our criterea for services here in NJ and he wouldn't meet it - would have to have a low IQ, which he doesn't have, so I don't think the PA division would be of any help. Currently going throught the Child Study Team evals so will see what they do for us.

Who is Dr. B? I can do CT in a day, so that is a possible option. Just give me the name and I can look him/her up. Thanks! Oh I also meant to add, I have wanted to try the ibupfrophen, but it is the weirdest thing... when I can tell he needs it, DS will NOT take it. He normally likes taken medicine but I get the evil eye and he has thrown it across the room if I try to slip him some ibu

I live in Eastern PA. I was just on Dr. T's site again... I've written his number down countless times. I don't know - I've just read stuff that holds me back there. But I'm getting desperate for an answer here. A clear diagnosis would be a GREAT start! Whichever it is would be a wonderful thing at this point. He does also have OCD symptoms. Obsessive thoughs - mainly of death, dying and poison. The fear that TS treatment could make PANDAS worse and PANDAS treatment could make TS worse terrifies me!!! His progression was very quick, but not totally overnight. His only issues prior were the transient tics. But he had just started first grade in a new school, so I attributed it mostly to that adjustment and it wasn't until the first full blown rage attack that I realized something was very wrong. He was tested for Lyme and that was negative. I'm not comfortable with sitting and waiting much longer. Maybe another ABX should be tried - he is on amoxi at the moment. I know people say augementen is really good, but he had a rough time with that once when he was younger so that makes me nervous.

Funny. I'm sitting here right now with pink eye. I get it a LOT, but DS rarely every get it. I wonder if he is passing it to me without getting the symptoms himself, like strep. I also get very bad sore throats often that do go away within a few days, but I rarely have gone to the doctor for them. Starting to wonder if I am the carrier here

I haven't posted much in the past several months, so I'll summarize again. DS will be 7 in June. This past fall, he started with some major behavior issues, tics (both motor and verbal), failing in school (mainly reading and writing while his math skills excelled), complaints of body aches, etc... After a rage attack in which he came after me phsychially, I finally decided this was off the hook and brought him to the doctor. Wonderful ped and wonderful immunologist later and we were diagnosed with PANDAS and given antibiotics for 6 weeks. He improved greatly! Tics all but vanished and he was much more stable and doing well in school. We were referred to a neurologist and other doctors wanted him to determine use of long term ABX. Well, he was, I thought at the time, pretty useless. Said DS has tourettes, which can be aggravated by strep. Just treat any strep infections as they come and do nothing for TS. At this time, DS was already starting to crash again. After an incident at school where he threw a book at the teacher, the ped agreed to a 6-9 month ABX course herself. He is more "stable" but just "okay" I would say. Main symptoms now are major mood liability, inability to focus, sleep disturbance and very minor ongoing tics. In all of my reading that I've done now for months. I am starting to wonder if the neuro was actually right? How do you know if a child has TS vs. PANDAS? I mean, he DID have pos strep cultures (still waiting on the ASO results). But he just hasn't responded to the ABX as well this time as the first. And in looking back, I had realized intitially that he had minor transient tics since 2 years old, but I'm only connecting now how MANY he had! He really did have a lot I just didn't connect them as tics. Ped said another neuro probably wouldn't be much good to me. I don't feel he needs psych meds at this point. I have the ABX so I feel I'm covered there for now. We are on the wait list for a developmental ped, but it's a year wait! Meanwhile, I have an unhappy child, a stressed out me and feel like I should be doing more!! Should I try a rheumatologist? Or someone else? A DAN doctor?

My DS6 just started Tball this year. He was diagnosed this past fall with PANDAS and we're doing just okay, not great. He has really good baseball skills so we figured we'd start Tball. The coach wanted to move him up right away but said no - he'd never been in an organized sport and is NOT a good loser. I wanted to make sure he got the basic concepts and sportsmanship down. That said - he is enjoying it very much and doing much better than expected. My question is though how do you know when too much is too much? Can one sport be enough? My son is in after school care until after 5. So on Tball nights, he is picked up, changed quickly, food shoved down his throat and out the door. We don't get home until after 7. He still needs to do homework, which is AWFUL when it's done later, shower and his 2 hour bedime route. this leads for no other things he wants to do. And of course, he can't seem to get that concept - "why can't I ride my bike, color, play a game..." Because these activities are part ritual for him. I actually one time, wrote a note to the teacher that sorry - homework was just NOT happening that night! Late game and he was totally shut off when we attemped to do it. He still needs swimming lessons and wants to try karate. I'm trying to hold off the swimming until Tball is over. I even under the best circumstances wouldn't want him in multiple sports/activities at once. Katate scares me bc I can't find a place that lets you just come once a week. I'm not looking to sign a contract for my 6 year old!! Do you find they "get used" to the schedule eventually with sports/activities? Is it worth the upset when the event is over to continue? And if I even consider NOT signing him up for anything so he can complete rituals, am I just giving in to the rituals? And a side note - I CANNOT find a psychologist to help us! I'm totally against a brick wall here. No availability, never heard of PANDAS, etc...

Is that actually a "workbook" and not just a story type book? I've had it on my ebay watchlist forever and haven't bought it. I was afraid it would just be over his head. Maybe I'll just buy it and check it out for real. I think he is still too young for CBT unfortunately. He is in the process of evals with the CST but moving slowly I think. I'm afraid they are going to push the 60 day legal limit beyond the school year. I made the written request on March 22nd. So they COULD not complete it prior to the end of this year, which thanks to a gazillion snow days will be June 14th. I'd REALLY hoped it would be done since I'm also requesting he be held back in 1st grade, but they asked that the decision be made in conjunction with the CST evals and reports. They are moving VERY slowly it seems AND to boot - the school psychologist is on maternity leave so not much help there It would be VERY nice if I had her support (and he of course did as well) right there at school!

So my son is 6, will be 7 in July. First episode was recent and he was diagnosed right away - LOVE my pediatrician and immunologist for that! After his first month on ABX, he showed improvement, went off of them and got worse. Neuro was useless and my ped is now prescribing 6-9 months of ABX. While he is more "even" and easier to redirect and de-escalate, there are still many behaviors that upset me. Mainly, my son has started some self abusive behaviors. While they aren't intense, they are obviously distressing. He will call himself "stupid" over the simplest thing and hit himself in the head and more recently, started biting himself. Never has broken skin, but has left marks that linger for a few days. He also now realizes that something is wrong with him. I have given him the short, 6 year old version of PANDAS so he doesn't feel totally clueless and has some explanation for all of the doctors visits and daily meds. So while the medical is being treated, I'm still concerned about the emotional. Have people had success with taking kids this young to a psychologist? I am a social worker myself so fairly aware of "the system" and have some contacts. Both the neuro and the peds have recommended it at this point. My husband is opposed so that is a whole other issue of course. But I will deal with that if it will help. I've just never experienced taking a child this young to a psychologist for a disorder that is medically based. I guess my concern is also - he is so concerned about having problems that it might make him more upset - KWIM?

It's okay. I'm sensitive In ebay groups, you get reamed if you dare to mention something that has EVER been brought up before! LOL! This is a much more tolerant, understanding group - knowing people are more new to this world and still learning. I am still in awe how our world has been rocked in the past 6 months and it seems everything comes back to the PANDAS.