wornoutmom

when I hear rash and Lamictal in the same sentence I think Steven Johnson syndrome, but that's supposed to happen going ON lamictal, not off I thought? Would it be worth looking into?

Somehow couldn't resist this post today. Pediatrician: "I don't know that your son gets sick more often than other kids, it just maybe causes you a little more trouble when he does" (since when does a sick kid mean having to call the police to your house?) Same Pediatrician on another visit: "So why are you here? If I don't give you antibiotics are you just going to go trolling for them somewhere else?" Nurse at Pediatricians office after I called begging for help:"Wow - that sounds like you're describing PANDAS!" Me: "It IS PANDAS!!!!! Your office has known this for 7 years!!!" Renowned PANDAS Expert: "PANDAS kids don't have good days. Just bad days and really bad days." Sigh.....

Joan: I may be going out on a limb here, but I wonder if this may be one of those put your foot down moments. As in "this is not negotiable. this is not up to you or OCD. this is a medical necessity and we aren't negotiating when you take it. You will not go on vacation unless this is in your system". Only you know if this could work with your son. I have not had to go there often with my ds15, but sometimes I do and if I hold fast and strong enough, and he has enough time to think about it, he acquiesces. It takes a lot of energy and strength to hold that position and sometimes I just don't have it, and would truly understand if you don't have it either given all you've been through. But if he fell down the stairs and a bone was sticking out of his leg, how firm would you be about having to call an ambulance. This is just as important, if not more...

We DO have some help here in Michigan. I sent you a PM.

pandas16 - I absolutely loved reading your post. My ds is 15 - lived with this much of his life, but just got IVIG/abx in June. Can't say we've reached 100%, but maybe 85-90%?? What we've noticed in the last 5 months or so, is that when an illness hits (now mind you he's still on abx and he's not gotten hit with any of the biggies like strep etc. this year), the anxiety/OCD ramps up, but it is kind of a "flare" that lasts about 48-72 hours, and then he goes back to his 85-90% like it never happened. The flares are different in intensity, and he gets scared this means full fledged exacerbation, but so far instead we're seeing this new pattern. And it sounds very similar to what you describe. So the goal now is to not panic when it happens, and figure out the best way to deal with it when it does, knowing it is a temporary thing. I can't wait to show him your post. Because honestly, reading about your very functional life, even with these flares when sick, gives me so much hope for his future - and I really really needed that! Thanks for posting!!!

My ds15 developed school refusal at age 12 during an exacerbation.. Here's what didn't work: threats, begging and pleading, changing his morning routine (i.e going out to breakfast before school, waking up to ice cream in bed, sleeping in his clothes so he'd just roll out and go - crappy suggestions from a crappy therapist.) We also tried gradual re-introduction of one hour at a time - didn't work either. What finally got him back to school after 3 months was a combination of getting him an IEP so he had support at school and reduced stressors, and a daily reward system/contract (new therapist). We basically gave him a point for each hour he was able to remain in class. Then I bought a ton of junk from the dollar store and set up a prize box. Each prize had a point total, so depending on how many hours he was able to be in school (and not home or the counseling office)he could pick out prizes at the end of the day. Additionally, if he made it to school something like 85% of the time the next 3 months, he got a big reward (for him it was a small tv for his room). For us, it gave a concrete way of acknowledging how hard it was for him to be at school, and rewarding him for his hard work at sticking out the anxiety instead of running from it.

We used Coram here in Michigan, and they were great to us. They sold us the Gammaguard at cost because we were self pay - about half the cost of the hospital. We opted to go to the infusion center, but in hindsight, if I had it to do again, I would have them do it at my home to make it more comfortable. We did the 1.5 dose over 2 days. Our dr wrote for 1 day drip, but the supervisor at Coram said no way would she do that dose in 1 day. She wanted to spread it out over 4 days! We ended up with 2 days to save on nursing care. I agree with the GO SLOW and add saline advice. Our first day took only 3 hours and ds ended up with all the horrible side effects the morning of day 2. After they resolved we did the 2nd day in 5 hours with saline for almost 12 hours. Much better day!

Well, I wish you luck. I finally gave up with Aetna after 3 appeals and a peer to peer review with our neuro and the Aetna med director. I had spent hours on the phone, submitted papers, letters from docs,cunningham results etc. This is the company who has covered thousands of dollars in the past 3 years for psychiatric hospitalization, therapy, psychiatry appoinments and psych drugs (which are being use "off label" and "experimentally"). I really think the bottom line with Aetna is they don't want to spend the money and have figured out how not to have to. I finally just gave up. Never filed the final external appeal. After the fight it took just to find a dr. to give my kid the treatment he needed, I didn't have any more fight in me. They won. But it was the best $12,000 I've spent in my life. I selfishly want you to hire a lawyer in hopes someone can kick their *** and make them fork over the coverage.

Cindi I can't answer the lyme question for you. But I did want to tell you that my son had a similar worsening on Azith last year. He had been on 2 courses of Biaxin and showed improvement improvement. About 2 weeks after stopping the Biaxin his psych symptoms started ramping back up and he felt sick again. I took him to Redi care where they dianosed a sinus infection and gave him a z pack. Within a few hours of the first dose he flew into an exorcist type rage (which he had been without for about a month) and his OCD ramped up. By the 2nd dose, he was thrashing on the floor and told me he felt like he was crawling out of his skin. Per out PANDAS doc, we took him off the Azith and put him back on Biaxin. Within a few hours of the Biaxin, he told me he felt better in his brain, and it was steady improvement after that. So I don't know what it is about the Azith (he had never been on it before) but wanted you to know we also had a very bad experience with it.

While I am very thrilled this study is happening, my heart sunk when I read it will be 3 YEARS!! Wow - my son will be 18 (and diagnosed for 12 years) before these results are published. Makes me feel so much empathy for all those parents of kids who were disabled (or died) of polio before they came up with the vaccine.... I am very glad that a few will be able to turn to the study though and receive IVIG without cost. I do wonder about the placebo group though. Won't it become obvious to the kids/parents which group they are in when the side effects (fever, migraine, vomiting) of infusion kick in? And how will that knowledge effect reporting of symptoms? And if these kids have strep infection, are they going to be allowed antibiotics? and if so will that effect the results? and after 3 months wait for the placebo group isn't it possible that the symptoms might naturally wane as the infection that brought them there in the first place subsides? and of course, like any study, my heart breaks for these kids and families in the placebo group who's symptoms don't wane, and they wait through all this ###### for 3 more months for IVIG. 3 months is a really long time when you're in exacerbation....

Seems like in Michigan it's easier to get crack than antibiotics. And don't even get me started on SSRIs.... I agree with Wendy - what about just showing up at the LLMD appointment with your youngest in tow - and a copy of his lab results? Also recommend posting this on the MI support group board - there may be some local connections/advice for you? -Rachel

Emerson - I just can't believe you actually posted a picture of your throat! Just have to say this - YOU ROCK!

Emerson - I just can't believe you actually posted a picture of your throat! Just have to say this - YOU ROCK!

If you think the catatonia may be in the severe OCD category, you might try calling Alexian Brothers Hospital (am I allowed name specifics on dr names here??) The director of the OCD/Anxiety program is extremely good at ERP and most definitely knows what he's doing. Maybe he or one of the staff would do a home visit if you explain the situation? PM me if you are interested in more specific info on this.

oh my goodness what you have been through! My heart is just breaking that you have been in this medical system and things just get worse and worse. I too was thinking encephalitis lethargica when I read your post. THere is some very good information on it in the PANDASnetwork website. My son (15) this fall that we thought might be catatonic-like. He was non responsive and when we were able to get something out of him it was grunts or finger movements (thumbs up/thumbs down). But nothing like what you are experiencing. Can I ask what state you live in? Maybe someone has a nearby connection for you? Perhaps a phone consult with Dr L or Dr T? My heart goes out to you!!

Tracie: We have dealt with this for a long time - my ds is 15 now. When he was your daughters age he had a hard time playing alone, and never had an imagination. When he hit his hardest exacerbation at age 12 he literally could not entertain himself at ALL and we ran around like crazy people trying to entertain him. The only problem is he always had to up the anty, and normal activities became not enough. He needed to do something BIG to get any feeling of satisfaction and when it was over he too crashed. At age 12 his therapist tried to get him to write a list of things he liked to do or could do on his own. It was very very small and he had such a hard time even starting anything. He just couldn't seem to do it. Flash forward to exacerbation at 13/14 - his main OCD trigger was around this issue. He would scream "I want to DO something!" and "What's happening?!" and get stuck and end up in a 3 hour rage/terror attack. Since IVIG/abx he has finally learned to relax a bit. He still makes lists of things he might like to do for himself, but they are usually simple like "go driving" or watch a football game on tv. But it's like his personality somehow stopped developing and he doesn't even know what he likes to do anymore. He has no hobbies, no friends, and few interests. So it's hard. It's like a whole skill set he has to learn. He too caught a virus last week and we've seen a little resurgence of this. He and his new therapist have explained it this way - his main coping skill for not sinking into the racing thoughts or depression was distraction, so he was constantly trying to stay busy to keep the thoughts away. But because this was only a temporary fix, and the thoughts just came right back after the distraction was over, he'd need another one. And then when it wasn't working, he would need some activity more exciting to keep the thoughts away. He also would need to know ahead of time how every hour would be filled so he could combat the fear that the thoughts would take over. He also said that his doing something big (think going to sporting events, concerts etc) was a way to look forward to somehting to combat depression about the state of his daily life. He has also said that in exacerbation he could NOT relax - the worry was just constant, so he felt compelled to always do something. Now my younger, non PANDAS son, has always been able to play alone, has a ###### of an imagination, and can spend hours at home just doing whatever, and he has been this way since age 2. I do think this is PANDAS related and I know only too well how exhausting it can be to feel like you always have to have plans or come up with activities. It's sort of like being dragged into their compulsion and you end up resenting spending time with them because it never ends. Oh, and we too have tested over the years for strep when we saw exacerbations and it has been negative. I am a true believer that strep is not the end all be all. May start this process,but it doesn't end there at all. Has your daughter done any CBT/ERP? My son responded GREAT to this kind of therapy at age 6/7.

d - I'm so so sorry you are back to this place. Every good or even "not as bad" day here I thank "the universe" and accept gratitude for the day, because I know the next day it could all turn around. You must be beyond exhausted and heartbroken. I hadn't heard the MCIS moniker before but it feels fitting to our situation as well. I only wonder what the "rest" of colors are that docs haven't thought to look for yet. What was it about THAT virus that sent your son over the edge again. I am just crying tears of grief for you. As far as convincing your son to take the meds/see the doctors I can only tell you what helped my son when he was at that point last year. First of all, I told him that I loved him more than the world itself and I would never give up trying to find answers or trying to help him, even if he'd given up on himself - especially when he'd given up on himself. I told him that I understood that the behaviors he was showing we'rent in his control - it was because of sickness and he could no more control that than he could a fever or a rash, and that no matter what he did (and as you know he got pretty violent/destructive) I would not blame him or be angry or love him any less. I told him I knew he was scared, and that I was scared too, but we WOULD figure this out, no matter how long it took. You might try explaining that you did IVIG last year not knowing if it would work, and it did - for a while. And he felt better for a while and you were a family for a while. And so you tried again, but it didn't work this time. So now it is time to try something different. It may not work. But you'll never know if you don't try - what has he got to lose. If it doesn't work, you'll just keep on searching and trying because that's how much you love him. For me, it was important to remind myself everyday that he was life alteringly ill and that helped me learn to react more with compassion in the midst of this craziness instead of anger and frustration. For him he started to believe that I really would do about anything to try. One more thing. If you have the means and aren't already, I really encourage you to find a counselor to sort out all your thoughts and feelings with. I can't tell you how much this has helped me. Sometimes I get perspective, or just someone to bounce my thoughts off of, or sometimes advice, or just a place to sit still and cry. You are an amazing mom and you deserve that kind of support for yourself.

Thanks for posting the link. I have been looking for information like this. I'm one to want to read both side of a coin before I make decisions...I have to ask though when you say the study supports Dr. Cunningham's statements, what statements those are? Did I miss something?

ds also had this last year on fingers. Never found strep - but did test for myco p. Went away after IVIG....

Well here's what I was told and what I remember. I had scarlet fever age 2 (or was it 4 - don't remember). Somewhere around that age I stopped eating fruits or veggies abruptly. No one knew why, but I remember being afraid of them as an older child and completely grossed out even looking or smelling. I had to teach myself to eat veggies again at age 22. It was a huge effort for me to cut a pear for my my son, because I would get the juice on me. No idea why this was so horrible - it just was. Facial tics started around age 8 I think. No idea if this corresponded to any illness or not. I do remember being on the pink medicine (penicillin? tasted like bubble gum) quite a few times. My parents were going through a divorce at the time and figured it was stress. Still have tic urges to this day. Learned to supress them mostly, but apparently still do the eyeblink unconsciously when I am stressed. Age 16 caught mono and strep throat. Don't remember any emotional side effects specifically linked. Was a depressed, angry teen. Somewhere that year though, after those illnesses, I began leaving my purse in strange places. Like all the time. Losing my car in the parking lot, keys, forgetting to bring home textbooks. A lot of what I recognize as ADD symptoms. Also some compulsive drawing (stilldo) and chewing of pens and pencils. Also as an adult I learned to recognize my own sensory disorder to noise - it's worst in the morning when I first get up or sometimes late at night, but the volume on everything gets turned up and I can't filter out the small noises. Even now my typing seems SO loud to me. Sometimes it's painful. Currently diagnosed with Fibromyalgia. So I don't know if I can say "Yes, I had PANDAS". But I can say there are somethings I look back on now that certainly fall into that "area of the brain" and it's dysfunction. Genetic testing studies have been done on Tourettes. are going on for OCD. Maybe someday we'll get to that point with PANDAS/PITANDS (gosh I hope they change that name soon!)

Lisa: When ds was this age he had us doing a bedtime compulsion of smoothing out all the wrinkles on his blanket. This could take upwards of 45 minutes and if we didn't do it we got the screaming,crying etc. I will share with you the ERP we did for this, as it was very successful and only took a short time. First, we discussed that it was upsetting us all that ODC (we called it "oscar" )was bossing him around and making him have to smooth out the wrinkles at bedtime. In order to get "oscar" to stop being the boss of ds, we had to do the opposite and "show him who's boss". We made posters to hang by his bed that said "Wrinkles rock" and "I love wrinkles" etc. Then we messed up the blanket on purpose and had him lie under it. At first we only put one wrinkle in and timed how long he could tolerate it. The next day we tried to beat the time (it made it a game - he was very competitive back then). After that exposure was done we would resume smoothing out the blanket as usual. But each day we would either beat the time or add another wrinkle to the cover. We went very slowly at first but after a few weeks of this the 'game" got boring and he started tolerating "some" wrinkles, which made the 45 minutes of smoothing to get it "just right" disappear. As far as the "over and over" thing. We learned to use the 3 and out rule. Once we'd said or done something 3 times, we were done. For somethings we had to start with a bigger number, but usually after the second time re-doing or repeating I would warn him about the 3 and out. We had a few meltdowns but he learned fairly quick that that was all I would do and soemtimes he would just stop after the second time because he didn't want to use up his thirdyet. Hope some of this helps. I know how utterly exhausting and hard it is. Finding a good ERP therapist was a life saver for us and the ERP/CBT lingo is a staple in our house now.

Survived the 3 hour IEP....just barely. Actually they were pretty great. We had an official document from the psychiatrist with a PANDAS diagnosis for the first time, and the director of special ed said she went to the NIHM website FAQs last night to read up on it as she's never heard of it before (of course). She said it was very "interesting". I stifled a laugh and said that wouldn't be my adjective of choice but, yes, it is much more than just OCD. The funniest moment came from the school social worker, who asked if I had difficulty finding a specialist to treat ds. I almost just peed my pants right there. But the highlight was when she said she was going to have to go tot he web and read up on it (ok - she's been his social worker for 2 years now!) and the director told her to be careful which websites she looked at because some of them said PANDAS was "controversial and unproven", and didn't give the correct information. She got a gold star. Then I gave them the appropriate websites...

Qunny: So sorry to hear about your sufferring. My ds is 15 and we have been dealing with this for over a decade. We are just now finding some lasting recovery after finding the right team of docs. We have seen many well meaning docs over the years who just didn't get it or know what to do. Please don't give up hope. There is a doc out there somewhere to help and you CAN get your life back. PM me if you'd like and maybe I can help point you in the right direction?? Meanwhile, keep coming here for support. This is the group that gets it ALL.

Great idea LLM! Thanks for the advice!