1tiredmama

My son has an appt with a PANDAS specialist in a few months. In the meantime, I need to find out which, if any, of his current doctors will carry out a recommended maintenance treatment plan, if needed. From what I read, the PANDAS doctor in my area isn't very good with follow-up. I know I'll need someone else that I can go to if my son doesn't respond or becomes symptomatic again. I have three choices: our pediatrician, his rheumatologist, or his neurologist. We saw one of them this week. I am grateful to this doctor for ordering lots of labs for me, including the specific ones I requested. And, I am happy that he isn't a "non-believer." But, here comes my rant... Dr. #1 is willing to oversee abx treatment if called for, but not PEX or IGIV. We had a conversation about risks (along with the fact that autoimmune disorders run in the family.) I was nice when I explained my thoughts on risk, but I wanted to shout. I have a 17 year old child who hasn't attended most of three years of high school! If he were a working adult, he'd be considered disabled. He can't drive, work a part-time job, or socialize normally! He has been ill since early childhood, crippled during exacerbations by his symptoms. What kind of life is that??? I've been following doctors' orders for years, drugging my son to address symptoms, but never the cause! I've tried supplements, chiropractic care, prayer, organic foods, OT and PT, only to watch my son get worse and worse as he grows. I'm done playing it safe. I'm ready for a little risk. Shoot, I've been risking it for years anyway! Each drug he takes comes with a risk. Every vaccine I allow is risky. Giving consent for anesthesia, scopes and biopsies is required in ink because of the risks involved! Raising a sometimes violent, sometimes suicidal child is risky for the whole family! You know what? I don't want to talk about risks at this stage of the game! Why pick and choose, now? And, furthermore, I don't want to be judged for thinking outside the box, for doing my own research, and for wanting to try something a little risky. Safe providers, and some downright lazy ones, have done little to give my son the chance at an independent life. As things stand, my child will not be able to live any farther from me than an in-law suite! He won't be able to keep track of activities of daily living, drive, or support himself! Sorry, but I'm not ready to wave the white flag! It's time to up the ante here. He's 17!!! Thank you for letting me get that off my chest. I feel better already!

Thank you for sharing what you have learned. I hope this new round of labs gives you some direction.

Yes, occupational therapy can help improve fine motor skills. My son had beautiful handwriting, i have samples from age 6. Somewhere around age 8, he lost the ease and beauty. By middle school, he could barely write, and what he did write was completely illegible--messy, off-the lines, reversals, and zero spacing. I took him to OT, and in 6-9 months, his writing had become legible once again. He never regained his baseline, but it's functional. I should add that my son has not yet received dx or treatment for PANS. Be prepared for the possibility that an OT may not think that your child needs services yet, as fine motor skills are still so immature in early childhood. My guess it that it might hinge on the before and after writing samples that you supply, and on the level of disparity, too. Some words of advice... Save samples for years to come. I am seventeen years into a mystery illness with my son, and I am SO thankful that I can prove today that my son lost skills so many years ago. Also, do not relinquish your originals. Leave copies with providers, keep your originals.

dut, I'm reading it the same way. That will exclude a lot of kids. I notice, too, the absolute requirement of acute onset. So, where does that leave kids who have had steady increments of neuropsychiatric problems since birth or toddlerhood, but not necessarily an acute presentation? I can understand sticking to the acute criteria for a disorder strictly dependent upon a viral or bacterial trigger, but they have opened it up to other triggers. How can they be so certain that these "other" triggers do not set a less acute presentation in motion?

Thank you all for your thoughtful and honest responses. You are right, MomWithOCDSon, meeting her "requirements" only seemed to lead to more. I was frustrated. So I had that frank discussion with her today. Although, she denied the "anxious" aspect of her demands, she took it better than I thought she would. I explained to her that while I love our lay-lay time, too, I had expected her to be growing out of it by now because that shows healthy development. I told her that if a child does not grow out of such behaviors on her own, then the loving parent must be the one to outgrow them. Her argument was that this routine was being extended as a way to simply spend time together. I pointed out that we are both home all day most everyday doing schoolwork and chores together, playing games, talking, and watching tv. This child is my shadow! Anyway, with some encouragement, she agreed to a first step of eliminating several morning lay-lays a week, and instead meeting in the kitchen for breakfast and a game. I'm eager to see how she does! Thank you, DCmom, for the reminder that her problems aren't so mild. Next to her brother's issues, and compared to the year dd required four stays in a psychiatric hospital two hours from home, we're still in the black. It's easy to lose perspective. Ds has an appt in May with Dr. L. That first appt costs $675, this is the only reason we need to have a wait and see approach to treating two kids. If this doctor accepted insurance, I'd get both kids in at once, for sure. Thank you, Dedee, for your "right to the point" reply. I appreciate it. I'm sorry that your dd is spiraling downward. We experienced a horrible, nightmarish downward spiral with our dd when she was seven, and it took a year to recover from. I feel for you. I know how draining it is, and mostly how heartbreaking it is to watch. If you ever need to a sounding board, feel free to PM me.

Hi! I have been here for a week asking lots of questions on behalf of my very disabled son whom I strongly suspect has PANS. I have not mentioned her, but my dd11 has some of the same issues, but to a much milder degree. I figure that if ds17 is dx'd and treated successfully for PANS, than I will pursue the same for her. She is currently under the care of a brilliant ped neuropsychiatrist for a textbook case of Bipolar I with depression starting at age 3. Anxiety was expressed at the same time as an inability to play with or talk to friendly, same age children whom she did not know well. This anxiety is still present, hence she has no friends. In kindergarten, she became extremely anxious about wearing a winter coat--believing that it made her scrawny body look fat. This led to crying at school and hiding on the playground when forced to wear a coat. In second grade, she started with full-fledged school phobia. Screaming, crying, running. She tried to escape the building and was successful on a few occasions. She was not allowed to return to her private school the next year. Since third grade, she has been in public school with an IEP. That first year saw lots of screaming, but she settled in. Mostly, she has been successful. However, this year she transitioned to middle school. Anxiety has been so bad that she is now homebound. Now, I see her developing a ritual. This is new territory for me. Many of you are dealing with this kind of thing, so I thought I'd ask if you think I can stop it before it gets entrenched. She and I have this thing called "lay-lay." We've been doing it since she was tiny. Until recently, it was simply a night-time tuck-in routine, whereby I would lay with her in her bed while we discussed her day/thoughts. She would suck her thumb and and snuggle for a few minutes and then lights out. On the wkds, we might do lay-lay in the morning in my bed. I figured she would outgrow it. With the re-emergence of school phobia this year, she has placed more demands on lay-lay. It HAS to happen EVERYDAY now, both morning and night. It has to be long. No one can interrupt to ask me a question. I'm not supposed to wear a bra (because she lays her head on my chest.) She grabs me with a certain look in her eyes if I try to end it too early. One day, I stormed out of the room telling her that she has placed so many rules and restrictions on lay-lay that it is no longer relaxing. Her response? An apology and this, "I'm not placing rules and restrictions on lay-lay, I'm enhancing lay-lay." Is she starting with an OCD behavior? This thing takes up an hour or more a day! I try to watch the clock to keep it as short as possible--she was up to 2 hours a day. Since I am the center of this ritual, can I stop it? Right now, just shortening it to a normal tuck-in results in grabbing and a refusal to turn off the light and lay down. A reward system will be rejected, and the idea of a negative consequence seems cruel. She already interprets my watching the time as a lack of love. Maybe I should have a frank talk with her and set a timer for 15 minutes. Your thoughts, please.

Hi, Lotafaith! I'm just exploring this forum because I fear my anxious dd is starting with an OCD behavior, so I have very little experience with OCD. However, my family has LOTS of experience with meds for neuropsychiatric issues. I wanted to address side effects. Three of my children have tried Buspar for anxiety. No one experienced any side effects, but no one got relief from the anxiety either. I take Gabapentin for trigeminal neuralgia (facial nerve pain.) It works, but the side effects are terrible. This drug is known to scramble your brain. It affects the ability to find words, and it affects short-term memory and the ability to follow through with one's own train of thought in actions and in conversation. I feel dumb on anything more than the smallest dose--which I am now surviving on, thank goodness! I've read about many other adults experience the same side effects. I would not use this drug unless I absolutely needed to. Just my two cents...

Welcome! I'm sorry that, as a newbie myself, I do not have an answer for you. I'm sure others will be along soon. I just wanted to say hello.

Thank you all for your input! Yes, tpotter, given the fact that I have an autoimmune disorder and the fact that my cousin had juvenile RA, I felt certain even before I knew about PANS that my son has an AI disorder that is attacking some part of his nervous system. I just couldn't find any data to prove it. He has been in treatment with a trial of Plaquenil, which is actually an antimalarial, for about a year. I also tried it for nearly a year. It only helped a little for me, and I don't think it is doing anything for ds. I am now on Imuran, an immunosuppressant, and I love it. It keeps the severe fatigue, joint pain, and nervous system symptoms in check." I'd like to try it for ds. Prednisone can be very, very helpful alongside of one of these types of meds, but the weight gain is awful, and getting off of it takes forever. My son already struggles with self control when it comes to all the wrong foods, and we argue everyday about what he can and cannot eat/drink--he'd like McDonald's chicken nuggets everyday! He is a bit overweight, so Prednisone (beyond a burst) is not an option. He sees my rhematologist--and she's great--but I should probably add a peds rheumy to the list of professionals we need to consult.

This may be a dumb question, but remember I'm new here. I'm reading about kids who get better after abx and IgIV treatments, only to backslide after their immune system kicks into gear due to re-exposure to offending agents. As someone who has a form of Lupus causing attacks to my nervous system, I can't help but wonder why there is no mention of immunosupressant meds. The right one gave me my life back. I was barely functioning a few years ago, and now, I'm healthier than ever. So, as I read about regressions after a treatment that Dh and I may only be able to afford one time, I feel compelled to ask what might be a stupid question. Yes, I know that it lowers immunity to everything, and I would hesitate to use them on a young child, but a teen can be taught how to lower their risk of catching things from others. I'd rather deal with more infections, so long as the immune system stays in check. Your thoughts, please.

What kind of mom are you? A terrific mom. A loving mom. A brave mom. Praying for you!

HA! I had to laugh at your description of the crazy scene at the dinner table. With two bipolar kids, I've had many such dramas play out over dinner with all the same thoughts that you described. I wouldn't worry about an incident such as that. In fact, I'd EXPECT it! Last year, my dd11 had to do three separate bursts for severe asthma. I thought I'd have to move out of the house! My Facebook status read, "Shoot me now. PLEASE!" My normally sweet little girl was grumpy, nasty, and a bit irrational. Prone to rants, if I remember correctly. She had no patience and zero tolerance for ds17 and all of his Aspergers behaviors. I've taken steroids twice. Once, I became euphoric and painted three rooms of the house! The second time, I was crabby, impatient, and prone to crying. Don't worry. I don't think that your ds's behavior is in any way indicative of the outcome of your trial.

Just got off the phone with the doctor. She is prescribing 15 mg for 14 days. Ds weighs 185lbs. Wonder if this will be a fair trial. I am looking to see if his tics improve.

Thank you everyone for making me feel so welcome here. I am taking notes on your experiences, recommendations, and advice. I am researching well into the morning hours (and then taking care of two homebound kids by day.) Mom2yo, I am SERIOUSLY 1tiredmama this week!

Can someone tell me what dosage of Prednisone (I assume that's what we're talking about) is used for a steroid burst? Thank you!

Thank you all for your replies. I'll keep pushing ahead. EAmom, I'm going to try the Ibuprofen test. My son takes Lithium, though, which means that I have to be very careful. It can cause Lithium toxicity. I can only do such a trial for a few days. I'll let you know if anything happens.

Thank you all so much for your responses. Every piece of information helps. I take notes on what I learn! Dedee, I have seen the list of ways that a child can present with OCD. I still do not think that there was any OCD in early childhood. It may have started around age 8 or 9 when he started a compulsive tongue thrust that moved his front teeth to the point of needing orthodontic hardware to stop the behavior and pull the teeth back in. BUT this could have been a tic, I don't know. Either way, it was not his first symptom. I CAN say that he started pulling his hair a few years back, creating bald spots, and I know that's OCD. Rowingmom, I'm still looking for a specialist that I can afford, one that takes insurance. And, preferably one that I can drive to in a day. Closest one is Dr. L. and she isn't taking insurance. LLM and Tpotter, you make a good point that maybe "sudden" symptoms can be overlooked. I could see this happening, especially in early childhood when even the healthiest, neurotypical child's behavior is erratic and ever-changing. and, I agree that I need to look outside of the strep box. My son's rheumatologist just agreed to test for mycoplasma and retest for lyme. It's a start... Thank you all for reading and responding to this post!

This question is for those parents whose children were dx'd and treated successfully for PITANDS. Does the lack of an acute, dramatic onset of first symptoms rule out PITANDS. With my son, the first symptoms (which started in the toddler/preschool years) as with every new symptom over the years came about gradually. Also, does the first symptom have to be either OCD or tics? Thank you!

I just remembered something that leads me to ask a very important question. When my son was 7 years old (only bipolar, sensory issues, and joint pain back then), he was admitted to the hospital for a severe infection of a lymph node in his neck. He was given a strong antibiotic intravenously for 4 days, then sent home on the same drug orally for a time. Looking back, I don't recall his neuropsychiatric symptoms improving at all. In fact, just months later, he had his first admission onto a child psych unit. So, my question is this: Does the fact that my son showed no behavioral improvement following IV antibiotic treatment rule out PITAND? Thank you!

Thank you tpotter, kimballot, and kiera for the warm welcome. The more personal stories I read, the more conviction I have in going after diagnosis and treatment. I won't take no for an answer any more, I can't! My son needs help, and for the first time, it feels within reach. Tpotter, I cried when I read your post. I shared it with my husband. Your son's story gives me hope, real hope. I'm not looking for a cure. I know how autoimmune disorders work, as I have Lupus myself. But I want for my son to have a chance at life. I want him to wake up and be a full participant in life--to go to school, to play soccer, drive, date... I want him to brush his teeth without fussing and fighting, to remember to brush his hair, wear deodorant, and take his meds. I'd LOVE to have the child I lost back, but I'd settle for half that! Your post gives me hope that some improvement is possible. Thank you! I still CANNOT believe that there are children out there like my son! I'm trying to wrap my head around it. After all these years, we are not alone any more. THAT'S HUGE!!!

Yes, Kiera, be persistent, assertive, and aggressive, if need be. I look back at all the lost years, time my child will never get back, and it makes me cry sometimes. As hard as I tried to find the answer, I still feel guilty. I feel like I should have found it sooner--even though I know I did all that I could. I sincerely hope that your child recovers while he is still a little boy. He is so lucky to have a mom like you fighting for him.

Hi! I'm new to the forum. While my 17 y/o son has been “sick” to some degree since he was a preschooler, I am new to PANDAS. My child was once a very bright kid, working a full year above grade level. Now, he is a young man with a long list of diagnoses, so cognitively impaired and socially delayed that it is doubtful he will ever live on his own. I have been to many specialists over the years asking for the name of ONE disorder that would encompass all of my son's symptoms. I refuse to believe that one child can keep developing new illnesses/disorders. But each doctor only wanted to deal with their small piece of his “complicated case” (that's what they keep calling it.) Last week, after the latest mystery symptom (reflux, nausea, gagging) landed my son in the hospital having lost 20 lbs in one month, we consulted yet one more specialist. And, finally, someone is willing to look at this. He wants ALL paperwork from EVERY doctor and lab. Finallyyy! During the intake interview, the doctor offhandedly asked me if PANDAS had been considered. It had not. He mentioned a doctor in D.C. and the conversation moved on. Last night, I did some research on PANDAS. It is the first time in all my years of reasearch that I have found something that explains all of my son's symptoms. I couldn't believe it! See for yourself—my son is dx'd and treated for: bipolar disorder anxiety Tourettes adhd insomnia undifferentiated connective tissue disorder severe fatigue (unable to attend school) Aspergers In addition, my son has joint pain, a history of migraines (age 4), peripheral neuropathy, upper and lower GI issues (despite normal colonoscopy and endoscopy,) AND when he was in elementary school, he lost handwriting skills, math skills, and 36 IQ points. Not one doctor has ever been able to explain to me how my gifted child became a low average, extremely learning disabled child. My son's symptoms do not seem to come and go, although they get better and worse. But, something is always going on. He takes a lot of meds to control the symptoms. The hallmark of his mystery diagnosis is that every few years something new crops up. He did not start out with every problem at once. His picture grow as time goes by. I never know what will be next, and it scares me. It is my mission to get an appt on the books by the end of tomorrow with someone who is qualified to evaluate for PANDAS. I am wondering what I can expect from such an eval. Thank you! I am SO glad I found you! 1tiredmama