bubbasmom

What is OHI?

So I don't want my son to flunk school. It's not so much his grades as it is his absences that are the problem. The district just wants these very specific rules and times and dates for everything to be over. Like we can wrap PANDAS up in this neat little box!!! My son at first didn't go to his early classes because of the huge sleep disorder. But was going at 4th hour (out of 7) so more than half a day. He now refuses to go. Some of it is anxiety, he feels like he's been out too long to get caught up, people will ask questions, his seat changed, more OCD kind of stuff. Goes into the huge fits of rage when he doesn't want to get up and go. What do you guys do? If you don't have a stay home parent how do you cope? How do you deal with your other kids lives? I emailed these same questions to Dr. K, we'll see if he answers. By the way we are 8 days post IVIG for the first time. Getting ready to go on an ADD medicine to help with the learning too.

I think posting a chart like that would be fantastic. HOWEVER, I don't know what everyone else is going through but with my son's rage and threats I haven't had time for a shower or to clean my flooded basement. i wouldn't have time to go through all of that. PANDAS consumes us. Every ounce of our being is centered around this. I haven't seen my mom for 2 1/2 months (she's 82) because I'm afraid to go out there with him in case he acts up. I haven't been out of arms reach of him since September 1st. If you have the time (and energy) that would be awesome.

I guess all we've been through with his rage I'm just very impatient. I really had hoped that this week we would see stuff change. It's such a bad time of year, we've already missed my birthday, my 10 year olds birthday - you know you spend your day hovering over the sick one making sure nobody ticks him off! He was in a fit on my birthday, doing 11 hours of IVIG on my daughter's birthday. Now Halloween is Saturday, I'm expecting the worst. We normally have family over, I'm just not up to it. Sixteen days at this point seems like a life time! More than two more weeks of this. I'm losing strength fast. He's 130 pounds and I have to physically restrain him when this happens. It's horrible. Thanks for the in put. I totally know what you mean about eggshells.... In our case, the first 2 weeks were worse after IVIG. Old symptoms all came back. It was on the 16th days post IVIG that a sudden calm entered our house. No other word for it. Our dd9 got out her social studies book and started doing her homework. It was unbelievable. This is such an everyday event, but she just clicked into "normal." Handwriting improved noticably week 3-4. Attitude improved dramatically in week 5. She started playing with her sister in week 6 (several hours of it). Her sister was sooo delighted because frankly she's been missing someone to play with. She was able to go to her room by herself and read.... We're now at week 13 post IVIG, things are still very good. We do notice a tiny vocal tic and some pushback/defiance. But it is really nothing but we're hyper alert. We're keeping her on 250mg azith and she's also on an SSRI (Prozac) at very low dose. We've decided not to change any variables for 4 months. Hoping you have similar results... Buster

Due to lack of doctor's in our area with expertise in PANDAS, we had our IVIG done at a hemotologist's office. They have warnings posted on all of their doors if your child has immunosuppression the child nor anyone in the household should get the nasal vaccine because it is live. I don't know if this helps. I'm not very experienced at the whole immunosuppressant stuff yet.

Anyone have advise to me for the IVIG. We're going through so much with my son. His fits of rage are so unbearable and we're all walking on egg shells around him. We did the IVIG Monday and Tuesday, when will we see something changing? We're so desperate I can't even tell you.

Can you tell me what happened the first time? I'm new to the IVIG thing, my son just had his Mon. and Tues. we've seen absolutely no improvement. I was hoping for at least something.

Okay, nothing to do with PANDAS but my oldest had chronic hives for 3 years she would get hives 2-3 times a day EVERYDAY. I know she took benedryl at least 5 days a week for 2 years and tappered off after that. It's just like Claritin or others, just an antihistimine. Give it to her if that's what works I say. But I know for my daughter the dr. didn't blink an eye at it. Your pharamicist can answer questions about that.

first day went fine, no side effects other than they injected benedryl right off the bat and in about 10 minutes he was sound asleep. But it was good, the place doing this is very kind and nice and bent over backwards for us. We live in St. Louis so we have no doctor here that deals with PANDAS (which cracks me up because we have 15 MAJOR hospitals without ever leaving the city limits - then many suburban hospitals). So this hemotologist has just agreed to do this per Dr. K's specifications to save us another trip to Chicago. Oh, wow! How did it go otherwise?

Okay, seriously I was told IVIG would take 5 or 6 hours each day for two days. UH, MAYBE NOT, try 11 hours each day! I was not prepared for that!

Okay, see you and i are kind of in the same boat with the rage deal. 130 pounder can really make things 'interesting' during a fit of rage. Our problem too is trying to keep him from hurting himself during that time. We had a bad fit yesterday as I said. But one thing really concerned me, he's never done before. I was pinning him down on the ground, squatted over him holding each of his wrists. He said he was hot - and I'm sure he was. But he babbled something that was out of his control kind of. "but my other twenty things....' and I asked him what he meant he just layed there with his eyes closed. He had a very very strange breathing pattern. Enough where I was keeping a very close eye on him, VERY close eye. And he kept his eyes closed. This was all very untypical of his fits. I'm going to call the dr. in the morning to let him know. And today my son does not remember that. I think he almost passed out, like didn't go all the way. Very weird. And all on the day we switched pills. Weird, huh? Our 10 yo son is on Risperdal 3mg/day, split as 1mg a.m and 2mg p.m. for rages and the like. It and Namenda (probably more so) have helped some. I repeat, some. Nothing else has. I gather, it needs to be 2x a day. Are you just taking it one time a day? When were were on 1mg, or 2mg it was always split a.m./p.m. Our psych cautioned us about the possibility of akathisia--the an inner feeling of needing to move. I am certain we are seeing that based on what I like to call "the wedgie wiggles"! They have given him a tiny dose of a drug to call that down. I hate it, but we are only out 3 weeks on IVIG. We can't be titrating yet, but that is Dr. K's plan once we get a good stretch of holding improvement. Our experience. Dawn Bubbasmom- I hope this ends up in the correct place in the thread! The very same reasons we are on it. Our goal is to get him off in time. IVIG with whom?? Dr. K said the older kids tend to have a bumpy road to recovering. He said younger kids tend to improve and just take off. I gather from several of the parents with older IVIG kids experience some pretty bumpy times in the initial weeks post IVIG. We have not had anything as bad as what we have had. I would say it is different. The flipping out times aren't as intense and don't last as long. Is your boy still pre-puberty? Dr. K is very optimistic even though Evan has had this a long time. Best wishes tomorrow!! smile.gif Dawn Hi my 15 year old son has been on risperadal since June 2009.Initially is was amazing he started on .25x2 now he is on .5 2x a day its ok not the cure all hes 130lbs also. The psy wanted to raise the dose but we wanted to wait until after the IV.Well its 7 weeks and the results are good and not so good .Were waiting for maybe more IV (we hope) The rages definetly arent as bad as before the risperadal and they are way better then before the IV. last week we had 2 rage attacks post IV and on antibiotics so we arent very happy.Today was a good day and hopefully we will speak to the neuro and he will agree to do the monthly iVs Good luck tomorrow and keeep us posted on the progress with your son. Melanie

You've had IVIG? My son is scheduled tomorrow. I was really hoping to see vast improvement, will I not? My son gets suicidal during rages so I'm desperate to keep him on some kind of meds. He's 12 and 130 pounds I can't physically restrain him much longer. Our 10 yo son is on Risperdal 3mg/day, split as 1mg a.m and 2mg p.m. for rages and the like. It and Namenda (probably more so) have helped some. I repeat, some. Nothing else has. I gather, it needs to be 2x a day. Are you just taking it one time a day? When were were on 1mg, or 2mg it was always split a.m./p.m. Our psych cautioned us about the possibility of akathisia--the an inner feeling of needing to move. I am certain we are seeing that based on what I like to call "the wedgie wiggles"! They have given him a tiny dose of a drug to call that down. I hate it, but we are only out 3 weeks on IVIG. We can't be titrating yet, but that is Dr. K's plan once we get a good stretch of holding improvement. Our experience. Dawn

anyone taking resperidal for rage? Any problems? Switched from 2 half mg tablets to 1 whole mg tablet and we had another huge episode. Coincidence?

I REALLY think my son had H1N1 following strep, only his H1N1 test was negative. But my nephew's was positive and they were together all Labor Day weekend, got sick 24 hours after my nephew and had identical symptoms. My son's strep test and strep cultures were both negative. But sure enought the PANDAS was triggered. Once we knew we had PANDAS again, we had the titers done, and they were high so it showed he did indeed have strep even though both rapid and culture were negative. I have also read about kids getting PANDAS triggered (not their 1st episode, but subsequent episodes) by virus. Who knows!!!!

That's funny about being a great witness. My oldest daughter (without PANDAS) is definitely gifted and has a high IQ of 149 has that photographic memory and has GREATLY used that to her advantage accademically. She study's for her history class by making these random posters with pictures drawn on them to remind her of events. Or I'll go in at night and she'll have her eyes closed giggling. When I ask her what she is doing she'll say "Watching an episode of Zach and Cody in my head". Goofy, but she sees one episode and has it memorized first time around. I would get him tested in first grade, you can request that from your district. If they have a gifted program the kids generally really enjoy it. My son's teacher last year (first grade) told me she is convinced he has a photogenic memory. I don't believe he has that but his memory is crazy good when it comes to weird details that most people don't pay attention to. He would make a great witness to a crime.

Anyone attributing migraines to PANDAS? or is that a whole other issue you think? I just wonder with the 'swelling' in the brain if it would be.

But the gifted thing is interesting to me because when you get to know gifted kids, some of them are quite quirky. In fact, before finding out all I have about PANDAS, I have wondered what all could be attributed to 'gifted kid syndrome'. But here's is an interested factor. My son has a 'reading comprehension problem'. Can read you a medical journal, just can't tell you what it means. We put him in a READ 180 program. It helped. His whatever scores went up to say 685 - whatever that means. But it was good for him anyway. That was tested in May. In September his scores on the same test dropped by over 300 points. I got a call from the principal saying obviously he wasn't trying. In the history of the school no kid has ever dropped that many points (and its an old school). So they made him retake it. He came home excited said he did much better - it came up literally TWO points. But guess what he also had started in with the PANDAS symptoms then. So I will be really curious after his IVIG Monday to have him retake the same test and see if his scores jump. I just think that might be documentation that we fall into accidentally, but could be benificial to getting these PANDAS kids help at school work. WE ALL NEED TO HEAD TO MED SCHOOL AFTER PLAYING DOCTOR FOR SO LONG WITH OUR KIDS!!!

That's all, just wondering? My son is and I saw another parent describe their child that way - just trying to see if that is a factor. My son's IQ is in the mid 130's.

I was just posting about my son who has a little bit different symptoms that others that post here. He has not so much the OCD or torettes as he does the 'fits of rage' and if things are not HIS idea he's not going to cooperate. The sleep disorder is a big one for him, and maybe a little separation anxiety mixed in, but only at night. Sometimes I have to sit holding his hand for as much as 2 hours to get him to sleep (and he's 12 long past the mommy putting him to bed age). The foul language only during 'an episode'. Episodes lasting about and hour or so. The refusal to make eye contact and curls up in a corner. I am ABSOLUTELY not a nurse, doctor, or even very experienced in PANDAS, but to me your son sounds like my son. And we have gone to Dr. K in Chicago for a second opinion and he confirmed PANDAS. CONFUSING ISN'T IT! THIS WEBSITE IS AWESOME THOUGH BECAUSESOM OF THESE PARENTS ARE SO EXPERIENCED!

My pediatrician's partner yesterday told me,"Oh you know there are many diseases that can be neuropsyciatric following strep that isn't PANDAS". I asked if they are all autoimmune, she said yes. She is very supportive of PANDAS but was just saying how if we can't get this resolved soon that we'd have to explore these other areas also. But to me, by the clear definition of PANDAS, wouldn't all Pediatric Autoimmune things that effect the child's brain - which is the neuropsyciatric part of it, Disorder Associated with Strep BE THE ACTUAL DEFINITION OF PANDAS??? I was so confused and she had 100 swine flu cases so I didn't really want to stay and argue. Anyone have any clue what she's talking about? She's a very knowledgeable doctor with a lot of experience. My son has symptoms that are different than a lot of you describe. Such as, he has very little tics - only knuckle popping and twitching while he sleeps. He has very little OCD 'routines', most of what is OCD for him is his inability to do anything that's not his idea. We leave when HE thinks its time to leave, we go to bed when HE decides its an appropriate bed time. The for sure PANDAS issues he does have is: accute onset following strep, fits of rage, the whole 'dilated' scared eyes, the HUGE sleep disorders, learning problems that weren't there 6 weeks ago, and the whole 'waxing and waning' of these episodes, and this is not his first time following strep. So we are planning on IVIG on Monday with great expectations!!

You have just described my son to a tee!

My son is 12. He's always had 'one of those personalities' that people have found the need to analyze. By that I mean did enough quirky things that anyone that has gotten close to him starts saying 'hmmm!' So I have a niece that was diagnosed with Aspbergers about 6 years ago in 4th or 5th grade finally but had been being tested for years for those quirky things. Now I think she truely has it. But the more I studied that, my son really came to mind and I've told people close to me that I really think my son could have aspbergers. Now one thing that goes against some people's theory on Aspbergers is that my son's IQ is like 130. But he has always had the social awkwardness, extreme shyness, talks very very low and will not repeat himself if you don't hear him, has only some OCD, and has a thing about 'his stuff'. If he has a toy in his hand and you ask if you could see it he'd say no ( in his mind you might break it, take it, use it up, whatever ) now if he wants to see something someone else has he thinks that's fine. And he's always 'picked' on people, in an awkward kind of mean way. This is only the second episode of PANDAS that we've 'recognized', but we've had that 'AH HA' moment realizing that PANDAS has gone on much longer than we realized. So most of our Aspbergers thoughts have turned to PANDAS thoughts. WHO KNOWS

I'm sorry you're going through all of this. How long has this particular episode been going on? How long ago was the IVIG?

So today is the day I should find out about insurance covering this. We have UHC. I sent the office the clip that the other person posted on here for me showing that UHC not only acknowleges PANDAS but uses the word "PROVEN" in terms of IVIG treatment. Even thought they are the ones that worded it that way and wrote that on the policy, they are still making us jump throught hoops and send for pre-determination. So we'll see I guess. Just wanted to let you know that the document I linked for UHC coverage does have disclaimers attached regarding coverage and we are not far enough in the precess to see if actual coverage will take place, but the UHC documeent did say that IVIG has been PROVEN effective, specifically for PANDAS. This strikes me as odd in light of the fact that PANDAS is "contoversial" and most would say there is no Proven treatments, but there it is. I'll find and link the document again if you'd like. Another document from UHC on Apheresis (PEX falls into this category), sounds like this procedure is a lot harder to get approved and makes no mention of PANDAS.

You guys seem to know more about this IVIG thing than I do. My problem is, so many people insurance does not cover this. How do people afford to do this once a month? And if it is just a 30 treatment, why does Dr. K insist that this is a cure? I'M CONFUSED! My son was scheduled for his first IVIG tomorrow, but of course there's all kinds of complications with my insurance. The medicine itself is $8,000 plus the doctors fee and facility fee. CRAZINESS!