1tiredmama

Oh, my gosh, Mar, starting a Christmas list right after Christmas takes the cake! Wow! You know, my ds did not outgrow the belief in Santa. Dh and I decided to tell him right before middle school because we did not want him to be teased at school. Do you know that he didn't believe me at first! He actually did a fact check by asking his dad! He was 12 years old! Nancy, you are absolutely right about the perservating. That's ds to a T. So, maybe it's not an OCD? And, yes, last Christmas, while he was still over the top, ds handled the holiday so much better. He was still undx'd, but on antibiotics for severe acne. Can't wait to see how he does this year with PEX behind him. Thank you, ladies, for responding!

Welcome to the forum! I agree with the others on every issue. My symptom list for my son goes back 15 years! Not one doctor has ever had a problem with that; in fact, they usually appreciate the thorough, organized list. Also, my two PANDAS kids have both had joint and muscle pain, on and off. And, at the age of 4, ds was treated for a year by a peds neuro for migraines. You are most definitely on the right track! Forge ahead!

Thank you, EAMom! I really enjoyed the show.

That's awesome! I met a PANDAS mom here in the family lounge today. Her dd was getting IVIG. Too bad you couldn't be here this week instead of next...

Just PEX, unfortunately. Cigna doesn't cover IVIG.

I am writing to you from Georgetown University Hospital!!! We finally got the approval I never thought we'd get, and ds is getting his PEX!!! I can't wait to see what it can do for him. Thank you for all the encouragement during our fight with Cigna!

I know your frustration and helplessness all too well. My dd 12 is just where your son is. Last year, she often hid behind her bed, face to the floor, in fear of her homebound teacher. She feared anyone who was in any way remotely connected to school, that included her counselor. Both the therapist and dd's psychiatrist told me that counseling would be pointless, if not detrimental to dd while she was in that state. Even so, I tried my own ERP with dd, taking her to the school each day if only to sit in the car out front. We made zero progress. Legally, your child must attend school or be declared a homeschooler, which is different from homebound. Knowing dd's situation, our school system sent us a teacher who is also an LCSW, who counsels children. She was great with dd. If dd could not walk or crawl out of her room, then school was held in her room, right on her bed! She tolerated that because she felt safe on her bed. She was dx'd this summer by Dr. L. and started on two abx. Slight improvement this year in that I could get her to school for two hours per day, but only in the special ed room. Exposure was not working this year either. And, you can't physically drag a 12 year old to school. I got a job, so there is no more opportunity to do exposure anyway. So, back to homeound. Dd has reluctantly agreed to see her therapist this year, and she feels that when her teacher begins next week, she won't need to hide even though she is afraid. I think the abx are helping a bit, but she still has so much farther to go. The key is to treat the PANDAS, then you are free to tackle the remaining issues because the child is then "available" to learn. Also, her therapist told me and the school that her fear of making a mistake/getting something wrong/not knowing the answer is performance anxiety, but also social anxiety in that she fears what her teachers may think of her. We do not see her anxiety as an OCD. Her dx is panic disorder. We are hoping to get PEX for dd because, at this point, we've exhausted all other avenues available to us. I wish you the best. You have my sympathy. It's a tough spot to be in. If you do find a good solution, I'd like to know what worked because I feel like I just keep coming up empty-handed.

Welcome to the forum! I'm sorry that your little girl has been so miserable. I agree with the others that this could be PANDAS--remember, strep may or may not be the trigger, as other infections can also be a trigger. I wanted to add that our PANDAS doctor told me that a child does NOT have to present with tics or OCD to have PANDAS. I have one PANDAS child with both tics and OCD behavior, but I have another PANDAS child with no tics or OCD (yet.) It sounds like you are doing all the right things. Don't give up. I used to think that, because my grandmother was severely mentally ill, my children had inherited a laundry list of mental illnesses. My PANDAS doc suggested that perhaps my grandmother had PANDAS! She died young from some kind of "heart damage"--possibly strep related. We'll never know, but it is an interesting theory. PANDAS is new to us, but it has probably been around for a very long time. It is entirely possible that your child inherited PANDAS, not mental illness. Hang in there!

Don't hold your breath on the realization that there is no Santa. It only made things worse here. It didn't slow the obsession or the list-making. Instead, he begs and begs for the gifts early. He is such a tortured soul come November. Sorry that your child is experiencing this, too...

I have two very different experiences to offer. Ds started Lamictal for severe depression when he was 9. He was underweight, and nothing else worked. It did pull him out of it. I kept him on it for 8 years. His last dose was early spring after 6 or 7 months of abx treatment. He was weaned successfully. Now, when dd was 6 and underweight from depression, we tried Lamictal since it worked so well for her brother. Big mistake! She became downright mean and defiant on it within days. When I took her off of it, she went back to her "normal" horrible state. I also use Lamictal to control seizures. I have been on it for 10 years. The only side effect I ever noticed was some weight gain, but not too bad. I find the ticcing side effect interesting. My son's tics started one year after being on Lamictal. His neuropsychiatrist never expressed concern about the Lamictal, and she is always on the lookout for negative side effects. I'll have to ask her about that...

I agree, ko. The BCH page has slowed down. We need to stay on it, everyone is needed.

The media will be watching this week, probably starting today as it is Monday. Stay visible for Elizabeth and for all our children.

My ds18 began treatment for PANDAS in the spring. With fall upon us, and knowing what I know now about PANDAS and OCD, I have a question. Every year, ds (and the rest of us) suffers from a horrible Christmas obsession. Each year, it starts a little earlier. Last 2 years, it started just before Thanksgiving. He becomes absolutely consumed by the thought of presents (for him, of course!) One year, he made at least 25 revised copies of his Christmas list complete with crayon drawings. He still makes some lists and still reads and rereads them to me. His obsession causes severe insomnia that no supplement or med can fix--he has been wide awake for up to 40 hours! Two years ago, he attempted suicide because of the horrible strife his obsession was causing in our home. When he was little, the Christmas obsession caused mania, which during the year he was 7, turned into psychosis. I could go on and on about his behaviors, but I know you get it and understand how far it can go. He finds these thoughts pleasing at first, but eventually they are so intrusive that he is literally being tortured by them. So my question is this: Can this be considered OCD if it only occurs for 6 weeks out of the year? As an aside, birthdays are pretty torturous, too, but at least there aren't reminders everywhere like during the holiday season.

Wow! That is fantastic! Thank you for sharing your joy.

I have been thinking a lot about the BCH incident, as we all are. I think now is the time to harness our collective energy to help not only this family, but all of our families, even those to come after us. Think about all of the negative comments we have endured from the medical community. Look at the overwhelmed, handful of terrific doctors working out their ALONE for our children. And, need I mention the insurance industry who stands in the way of attaining care for our sickest, most chronic cases??? Let's start thinking about what we can do. Now is the time! Strike while the iron is hot! I have contacted NPR via e-mail hoping to attract their attention to our plight. Here is a copy of my correspondance: "Have you seen the facebook page of Boston Children's Hospital? A lot of activity over the recent removal of a very sick teen from her parents' custody because the child's physicians do not "believe" in her previously diagnosed condition, PANDAS. NIH has researched this condition, validated it, and recommended a course of treatment intramural.nimh.nih.gov/pdn/web.htm I can't help but think of your interview with Candice Millard, author of Destiny of the Republic. In her research, she found that, in the 1880's, American doctors laughed and scoffed at the idea of "invisible germs," as Joseph Lister (a French physician) begged them to sterilize their instruments and clean their hands before touching an open wound." We are an amazing group of educated parents. We can do this! Let's make this incident a springboard! What can you do in your community?

You are, without a doubt, the BEST person to teach your child. Hang in there!

WOW!!! I'm speechless. That's shocking!

Thank you ALL so much for taking the time to help me pick myself up off the floor and regroup. I really needed to step back from the whole thing for a few days and take a mental break. Luckily, dh continued the fight without me. I'm so glad you are here. You REALLY get it, all of it--the behaviors, doctors, school, insurance companies, and all of the emotions. Thanks!

I am wondering if it would be apppropriate to try IV steroids for my kids. When is it used? Does it cause weight gain and irritibilty if you use it IV as opposed to orally? Where is it administered, and how long does it take? Thank you!

Things are awful right now. Ds18 should have been admitted to Georgetown today for PEX, but after fighting for insurance approval for more than a month and getting the approval for his admission, Cigna NALC pulled a fast one. On Friday, we learned that the procedure itself needed approval through different channels, and our doctor's staff never even sought that--didn't seem to know about it! So, the fight starts ALL over again. It has been an emotional roller coaster for dh and me. It is really taking its toll. I want to move on. I feel like we have to fight for PEX due to the length and severity of ds's condition, but ds cannot linger in his current state in the meantime. And, besides, I doubt we will win this fight. These insurance people are very good at side-stepping, losing things, and prolonging the whole process. I want to go into the next appt asking for an immunosupressant. Dh is in an insane mission mode. I'm afraid he's going to yell at the wrong person. I was just offered a very demanding job, which I need to take for the money. I'd be lying if I didn't say that I am looking forward to the distraction. But, I am terribly worried about balancing it all, including my own health/autoimmune disorder. Today, when dd12 had a panic attack over going to school, I finally admitted to myself that she won't be able to attend full time starting next week when I have to begin my new job. She hasn't been able to do more than a few uncomfortable hours in a self-contained special ed classroom since the first day of school. I'm going to have to pull her out and put her on homebound, which means I'll need childcare! Dd's fear is spreading from school to soccer--she loves soccer! I feel so helpless in the face of all of this. We've got only one more medication to try for anxiety, then we are out of options. I don't trust supplements. I've done my own research, and I'm just not comfortable giving the kids more than vitamins. My head has been killing me all day! I can't fix this, and I'm losing faith in our doctor's ability to fix this. I almost wish I didn't know what was wrong with my kids. Not knowing was hard, but knowing and not being able to fix it is even harder. What's the point in knowing??? Thanks for reading.

Thanks, tpotter. I will keep an eye on things.

Thanks, friends! When dd woke after being asleep for 2 hours (not typical for her,) I asked her how much soda did she actually consume. Well, apparently, when I wasn't paying attention, she had two big sodas. I normally am very careful about soda consumption/portions. Dd was up the rest of the night. BUT, she has definitely learned her lesson! Thank you for responding to this false alarm.

Dd12 has panic disorder, centered around school. She is only making it for 2-3 hours a day. I am seeing mild anxiety pop up over things like separation, going out with her BFF's family, and now soccer. She has a game tomorrow. After I put her to bed, she came out to tell me that she has butterflies in her stomach and her heart was racing. I asked her if she might be having an anxiety attack. At first, she said that she was not feeling anxious, but as we talked, she did admit to some mild anxiety over the game. Within minutes, her Trazadone set in, her heart slowed, but was still fast. Dd wanted to go to bed, and she did. Usually, when she is very anxious, she feels it in her stomach--crampy, diarrhea. She feels shakey and flushed. Can a child have physical symptoms without the usual emotions attached to anxiety? Other than these physical symptoms, she was not appearing anxious. Thanks! I am editing this to add that dd had a soda 4 hours before this incident. She was definitely experiencing the butterflies even before the soda, but maybe the caffine made things worse??? She has about two or three sodas a week with no problem, but I thought I'd throw that out there.

I'd like to hear more about this, too!