bubbasmom

That's usually when I just start giving the school CRAP. Tell them, no nothings new at home, we're still doing CRACK like usual, we still beat our kids on a regular basis, and the fact that we feed him dog food and make him sleep outside - NOTHINGS NEW! They're a bunch of Crack Heads! On my sons first day of kindergarten he pitched a major fit. Seriously, the principal called me and asked me if I abuse my child or if he's on prescription medication that's out of whack! I've lost so much faith in the school system, if your child's behavior doesn't fit into their little box, then the parents are doing something wrong! DON'T GET ME STARTED! I'm so sorry you're going through that. My son is in 7th grade now. He's 5'2" weighs 130. I'm sure like your child, when he throws a fit, its like an adult throwing a fit. My peditrician did give us Rispadryl (spell) this time and it has been a life saver! Unfortunately got a letter from United Health Care telling me it's no longer covered. But it's for rage. My son loves it because it helps him stay in control. Start at .25 mg twice a day, no luck but got him up to 1 full mg twice a day and we're in business. Also, Dr. K JUST EMAILED ME today that IVIG is a PERMANENT FIX! So many rumors. I'll post a copy of it next. No I am from Croatia. Hopefully ONE IVIG should be enough. dr. K In a message dated 10/19/2009 9:20:45 A.M. Central Daylight Time, dkriese@sbcglobal.net writes: I have one more question for you, Grant is scheduled for his first IVIG on Wednesday at a hemotologist's office at St. John's Hospital here in St. Louis. If and when the IVIG works - is this a permanent fix or is this a fix just until the next time he gets strep or whatever? I spoke with dr ks office today.I set up an appointment for next weds at 5pm my time .$350 OMG anyones insurance cover his Phone consult?Danny had a huge rage attack at school today.Im stressed!!Happy then unhappy .I do notice hes very hungry today.Hes 135 lbs and 5'8".School said as rageful as he was this am he was as sweet and calm in the pm.I love it when school asks if anythings different at home ?Like if were doing something ? Melanie

I've chatted with your wife a couple of times I believe. My son, who is 12, and your daughter are having such similar situations. It's 9:00, his bus came 2 1/2 hours ago. But we are getting IVIG Wednesday. So we'll see. Isn't this just the most difficult time!

Dr. K did not make that very clear to me. I can't handle WORSE! Seriously if it gets worse, my son will probably die! He threatens to kill himself when he gets in these rages. I am LITERALLY keeping him alive by walking on egg shells around him. This doesn't necessarily sound like a 'fix' if it takes this long. The overall 'peak' of PANDAS only lasted 2 months last time and we're already 6 weeks into this. But he wasn't threatening himself then. Someone's going to end up in a mental hospital before it's over - and it might be ME!!

Oh please don't tell me WEEKS! I'm so done with this! You know my son has the rage with this. He weighs 130 pounds and I have two other children to protect, basically from him. We are walking on freaking eggshells around him and we've already done this for 6 weeks. I was done with this junk YESTERDAY! Somehow I thought this would fix things pretty quickly, does it not? He's on psychotic meds we need to get him off of soon too. Dr. K doesn't want him on them long at all. So many ups and downs! I haven't slept in a bed for 6 weeks. I sleep sometimes sitting up most of the time in a recliner. Only in my bed once, and got up about 1:00 because I remembered I left a knife out. We gotta get our lives back!

Yep! I'm excited, I'm scared, I'm hopeful, I'm skeptical, I'm nervous! But that also beats the way I feel when my son is in the middle of a PANDAS episode. You've done this?? Any advice?

Oh good because if I had to wait ONE MORE DAY I was going to go nuts! We've already been in this episode for six weeks!

If my son is sick does anyone know if he can still do his first IVIG treatment on Wednesday? Of COURSE it's a weekend. He started with the 'stomach' pain yesterday. You can just tell he really doesn't feel good today. And of course he's crabby - that's our issues anyway. He's on a Zpack right now, 500 mg. Was supposed to switch to 250 tomorrow. Frustrating isn't it?

Just ALWAYS insist on it being sent off for 48 hour culture. My 10 yr old (not the one with PANDAS) just had a negative rapid and positive culture last Sunday we got the call. Also, do you know there are different kinds of strep just like different kinds of flu. There is strep A,B,and C. (So I'm told) Rapid only tests A.

Hate to tell you but NONE of my kids ever get classic symptoms. My one with PANDAS hardly gets symptoms at all. Usually the belly thing, a lot of lymph node thing, NEVER a fever. If you are worried about PANDAS take him! Also, I don't know what Walgreen's is like where you live but they have a clinic open 8-8 and they will do a complete culture for you and if its positive they will send it to your pediatrician. I've used them several times.

Unfortunatley my son cannot take steroids! Makes him nuts - isn't that ironic! But makes me nuts too. Crabby to say the least. So Dr. K decided not to do that. We are not yet scheduled for the IVIG because if I do it in Chicago positively nothing is covered under my insurance ( under out of net benefits I have $2,500 deductable then 50% coverage after that). So I'm trying to hold out for this St. Louis doctor to do the procedure. He IS on my insurance so at least his fees are covered, the facility is on my insurance so that's covered, and it will save me a 5 1/2 hour drive each way alone with my son because my husband can't take off work for it. So it truly is the waiting game. They have him on all the meds he can be on for right now - Zithro 500mg, Respedryl for the anger, Melatonin for the sleep disorder, and we're homebound at school trying to keep him from flunking 7th grade. So here I sit. And I sit and sit. I wait for that phone to ring like I'm waiting for my first date! I watch my son like he's a toddler. And yes, BOTH of my daughters are on antibiotics for strep right now. Coincidental, nobody is a carrier, its just going around. One's on Zithro, one's on Keflex cause she's allergic to Zithro. I will need to wait a couple more days to get them recultured. As far as second episode. This is the second episode, how shall I say - that has been our AH HA moments. He's had other times and we just thought he was crabby. I always said, 'Antibiotics makes him crabby' well the only time he's ever been on antibiotics is for strep! DUH! In talking to Dr. K, we actually can trace things back to very young. He had 9 strep infections the first 18 months of life. By the time he was 3 1/2 I just thought he 'had an attitude'. I always said, If people think 2 is bad wait till they turn 4. Well, I look back now at all the strep he had and we've just always justified it. That's the urgency with PANDAS, doctors are SOOOOO uneducated and make us parents feel like we're the stupid ones. No, they are. At least we have figured this out. And everyone of us is having to play doctor! Thanks for your advice. I'm hoping by Monday I have great news and we are well on our way into this. But if IVIG is not a permanent fix, then that's really going to be a bummer. Do they truly outgrow this? If this current episode is only his second, then he may benefit from a course of prednisone. However, if you are scheduled for IVIG, then a month long course is probably not called for. Once your son makes it through this crisis, do everything in your power to keep him on a prophylactic dose of antibiotics...this is like Rhuematic fever, it just effects the brain instead of the heart and joints. The PROVEN treatment protocol for RF is long term preventative antibiotics. Also, get everyone in your house tested for strep ASAP. As far as IVIG being a permanat fix for PANDAS, I personally don't think that it is. I don't believe that there is a cure, just very good ways to manage it---but i hope that my opinion is changed soon because it seems a lot of new ground is being covered with the immunology end of this disorder. Many parents are recieving multiple IVIG treatments because they have gotten a diagnosis of an immune deficiency, which is recognized by the insurance companies. Some of their doctors are telling them that when the treatments are completed, their immunue systems will be normal, and therefore the problem will be fixed...I am hoping this is true. An immunological workup will show if there is an immune deficiency.

HURRY UP AND WAIT!!!! When your kid has fits of rage on PANDAS this whole waiting game pretty much sucks!! I know the whole REST of the world thinks that this mom can just put up with this and wait it out. No, I can't, we can't, the whole family can't. So they stick the kids on antibiotics and maybe some Respadryl and say GOOD LUCK!! Dr. K, very nice very helpful, very BOOKED UP till Halloween. Pediatrician, very nice, very helpful, but reminded me I'm not his only patient and that there's a swine flu epidemic. Guess what, my kid is sicker than any kid with swine flu! My son has a life threatening illness, because he threatened his own life when he had a fit of rage, so if you're going to prioritize your patients you can just move my kid right on up to the top right underneath the cancer patient and the HIV patient (thank God we're not there). Then I read of these people getting more than one treatment of IVIG. I thought that was supposed to be a permanent fix. If it's not a permanent fix how are all of you paying that much money all of the time. I'm assuming most of you are one income families. We are because I can't get a job. (Every job I've ever gotten I've had to quit because of my son.) LOSING FAITH AND LOSING IT FAST!

My son too 'backslid' on Augmentin. I switched him so fast back to Keflex! I don't have the time, energy or patience to take even one step backward. We saw Dr. K on Monday in Chicago, he switched him to Zithromax 500 for one week then 250 I'm assuming long term after that because he gave us lots of refills. My son had this two years ago, we did Keflex, then he still had a positive culture, then PenVK, still had a positive culture, finally back to Keflex and within 24 hours of the next round of Keflex this whole PANDAS episode was over like it started.

I'm confused - when kids have IVIG, do they have to CONTINUE having mulitple treatments? At that price, how can people do that?

oh my gosh, BLESS YOU!!! How did you find that??? Thank you. You know though, we are in St. Louis, some of the best hospitals in the nation here, NOT ONE DOCTOR THAT HAS EXPERIENCE WITH PANDAS!!! It is so frustrating. Even my pediatrician can't find anyone. Thanks for your help. : Also from there- bolding mine: I think what they will cover depends on which UHC plan you are on, and this document refers to medicare coverage...my daughter has secondary insurance coverage from medicare.

What TYPE of doctor did the IVIG treatment? We can't find this out anywhere.

Okay so while my family FALLS APART over this PANDAS I can't get any help. I know I'm impatient but I needed a cure YESTERDAY!! I hear so many good things about IVIG but nobody can tell me who to go to how to get the treatment how much it cost does insurance cover it. It's extremely frustrating. I feel like the whole world is playing 'I've got a secret' around me! Please can anyone give me SPECIFICS about what kind of doctor does the treatment, does United Health Care cover it has anyone found out, how much does it costs???? My pediatrician is being very sympathetic, and he says 'he's waiting for phone calls' well COME ON. Since there's not a destinct start and stop time - there is but no body can predict WHEN that will be - I feel like a ticking time bomb! My son has RAGE, I MEAN RRRAAAAAGGGGEEE with this.

I have 3 kids with the WEIRDEST conditions. So first, all 3 of my kids, the first symptom of strep is often stomach issues. I suspect you only take your child in once they get more of the strep sort of symptoms. Most of us don't run our kids in for just the 'puky' kind of thing. So next time your child throws up, get them tested for strep I bet it's positive. Now for the hives. My oldest, following mono and possible strep, started hives 2-3 times a day EVERYDAY of her life for 3 years. She had to take soooo much Benedryl. She has almost 100% out grown it but it took forever. She is now left with what is called dermagraphism, which simply means 'she can write on herself'. Any scratch on her skin, not even with something sharp, something rounded like a stylist pen, will cause the area she 'writes' to raise up. It's harmless (and quite entertaining to a 15 year old!) So for the hives you might never find a cause, other than autoimmune which is what PANDAS seems to be as well. I want to add a question to this: has anyone's child ever had hives/urticaria with an acute strep infection?

My son at the moment is on Keflex because that's what worked two years ago. But last night I watched the video clip from Good Morning America 'Saving Sammy' and that mom said he must be on Augmentin. Of course my doctor is off today, so I can switch him until tomorrow. But my son wants to go back to school and i'm afraid to let him because if he has a 'fit of rage' at school I'm afraid they will put him in a facility. With the lack of education regarding PANDAS they put kids in a mental instution where they are separated from their family except one hour a week. How do I know? We went down that road 2 years ago. Not going to do that again!

Yes that is here in St. Louis (we're all a bunch of suburbs here!) How is he connected to the guy in Illinois? I've heard of him too. We're just 4 hours from the other guy.

So as all of the parents of kids with PANDAS I'm in crisis mode. I need a doctor in the St. Louis area that can treat this NOW, not next week, not working around a doctor's schedule. I see some of you posting about the fits of rage. My son weighs 130 pounds and is strong as an ox. During an episode he seems stronger. Do you know how hard it is for me to physically restrain him?? I know you all will think it is 'abusive' but in the end when its bad the only way for me to get him down to hold him is grab his hair. I don't pull just hold so he can't pull away. I can't stand it a minute longer!!! Plus my girls, I'm totally neglecting them. My husband has to work so I sit here on PANDAS watch all day. He can't go to school so here we sit. HELP ME!!!