1tiredmama

Thank you, thank you, thank you!!!

My kids have been using Culturelle for 2 months with good results. I thought it might be a good idea to change up the probiotic for awhile. So, I stood in the pharmacy reading the labels of a handful of probiotics for a long time. I chose Florastor because I know others here use it, and because it has a different ingredient than Culturelle. When I got home, I read the package insert and discovered that it is a yeast probiotic, as opposed to a bacterial one. Do I want that? I'm confused. I thought I am supposed to be protecting the kids from an overgrowth of yeast. This is all so complicated. Could someone please set me straight??? Thanks!

Sounds like a tic to me. I don't think ds has had that particular movement, but he did have some involving his torso. He also cannot stand seatbelts because of a tic in his hip. They can pop up anywhere and the movements can be large or small. I'm sorry your little one is dealing with this. I hope Friday's appt goes well.

I'm so glad that you found some answers today, and that you left with a solid treatment plan! I hope that your dd continues to improve.

I'd like to chime in here to say that my children are patients of Dr. Latimer. Neither of my kids has OCD, and she assures me that we are dealing with PANDAS. In fact, ds did not even start out with tics, they showed up 7 years into his presentation. Yet, now, he has just about every symptom of PANDAS, but the OCD. At our appt just 2 weeks ago, I asked again about the validity of dd's dx because she has neither OCD nor tics (yet,) but Dr. Latimer assured me that there is more than one or two presentations. My kids are not examples of classic PANDAS, but THE Dr. L. has no doubt of what we are dealing with. The kids are responding to treatment. Ds has made progress with abx, and ibufrofen is taking the edge off of dd's panic when nothing else would. I'm not here to say whether or not your doctor at Yale is on the right track or not. I am here to set the record straight on PANDAS presentation without OCD as there seems to be some confusion. From Dr. Latimer's mouth to my mine, here you have it. I am editting this, after reading some later replies, to add that ds actually does have some OCD. He went through a period of trichotillomania and he has a seasonal horrible Christmas obsession. This is important to add for accuracy, but also because I did not know these were OCD behaviors until I learned from hanging out here (thanks, Fixit!) It is easy to miss OCD in some kids. In any case, I never reported this to Dr. L, and she didn't need it for a dx.

Thanks, PowPow! Adding Zithro would make me feel a bit better. Dr. L has dd on both Augmentin and Zithro, so I think she'd be fine with that request.

YAY!!! That's the spirit!

I know that PEX won't strip him of immunity, but what if he goes to school and is exposed to illlness? What is in place, to keep his body from not only attacking those germs, but his brain, too? He will be on Augmentin, but what if myco sets his system off and Augmentin won't cover him? The stakes are so high. PowPow, your suggestion of discussing this with the hospital staff is a good one. I know they can answer all my questions re PEX. Are they also well-versed in PANDAS? Bees, I have CIGNA NALC (federal.) They use Care Allies to determine eligibity for admissions.

I have reason to believe that my ds may actually get a PEX this month! I have had to fight tooth and nail for coverage, and I'm sure we'll only get one shot. IVIG is not covered, so as far as the "big guns" go, this is it. You've probably already heard me describe how devastated ds18 has been by this nearly, life-long illness. I am wondering about keeping him away from the public for a period of time after PEX to keep his immune system calm. I've been given three different answers during each of three appts. Once, I was told two weeks (and maybe homeschool,) then someone else said he could go right back to school, then I was told on another occasion no school for months! I'm really confused! Which is it? I can't see sending him back to school this semester, he is physically barely making it anyway. He is nauseous, losing weight, weak, and exhausted all the time. At the very least, I think his body needs time to heal. I think I'd like to keep him out of all public places for months. I won't know his baseline if I don't give him the opportunity to heal his way to it. This is his senior year. He has missed most of high school due to PANDAS. He really wants to be with the other kids, and I want so much for him to have that, but this is his LIFE we are talking about. Did you keep your child(ren) home for a period of time? If so, how long? And, what keeps their immune system from over-reacting again? Ds will be on Augmentin, but his bloodwork never did tell us anything--maybe strep sets him off, but it could be another offending agent, so the Augmentin does not provide me with peace of mind. Thank you for your thoughts...

My dear friends, as the mom of three tweens/teens, I am no spring chicken anymore. Sometimes, my reply to a post will make more sense if I know the age of the child you are posting about. There is a huge difference between my big guy and someone else's little one. I find myself looking back to old posts sometimes before I write a response just to find a child's age. I can't keep them straight on my own. I'd like to invite you to create a signature line if you have not done so already. You can do this by clicking on your name, then clicking on "edit my profile" on the right, and finally clicking on "change signature" on the left. If a signature line isn't your thing, then please make an age reference of some sort in each post. I can guarantee you, it will be new to me everytime! Thanks!

Hi, Teri! I have no advice to offer for your particular situation, but I wanted to pop into your thread to welcome you. Soooo... WELCOME!!!

YAY!!! So happy for you and your family! That is GREAT news!

WOW! That's quite a story! You make some very interesting and accurate observations. I agree with everything you said. It is all true. I've got one... When dd was 7, her abrupt onset happened 35 minutes from home. I had my two other kids with me. I stayed cool because I had been through ###### and back with ds already. BUT, I could NOT drive. Dd was so out of control, and in addition to that, she was trying to escape the van (still parked) and run into traffic. I called 911 and requested an ambulance. She needed transport and a shot of Ativan. Guess what we got? THREE patrol cars--yep, 6 officers walking around unsure of what to do as a 7 year-old screamed, "Shoot me!" They would not transfer her because she would not stay in a seat belt (EXACTLY!) But, they would not call an ambulance for us either--something about it being a psych issue??? In the end, my ds's OT saw the commotion as she left work. She used fun whistles, lollipops, and ice pops to get dd to calm her breathing. She even followed us home in case we had to pull off with dd melting again. So, a toe got an ambulance and a trauma team. A dangerous PANDAS episode got us 6 clueless officers. Dd was so unsafe that just two days later she was admitted for 2 weeks to a child psych unit! Something has to change. We are still living in the dark ages when it comes to mental illness (which, BTW, I feel is a misnomer.)

Oh, my... Honestly, I can't speak to IVIG itself because it is out of reach for us financially. I can speak to something else that comes through in your post. I hear you minimizing your ds's condition. I'm not faulting you for it, trust me. I recognize it because I do it here a lot. Dh will remind me that if someone outside of our family were to come into our home and observe what goes on here, they would not believe what we are dealing with. You see, your normal, our normal, really isn't the norm. Yes, our kids get better and worse, but they are just shades of atypical. All is NOT well. If you can get past any risk IVIG might bring (if any,) then don't let ds's "break in the action" stop you. Besides, do you really want to wait until the next slide and take an oppositional kid to an IVIG session? I have two with PANDAS, I've seen ups and downs. The downs may change over time, but they have not gone away, and as the kids move into adolescence it gets harder. I wouldn't wait. If Dr. L. has ordered IVIG, she must think he needs it and can benefit from it. PS. I think second-guessing goes along with being an intelligent and good mom.

Oh, Emily, I feel for you! My ds just starting brushing without an argument or a fit 4 months ago, and he's 18!!! Like you, I tried everything. He hated even the smallest amount of foam, and I never did find an acceptable flavor. Wouldn't do mouthwashes or flouride rinse. For the first (maybe) 8 years, I brushed his teeth. Then, I argued and or threatened a negative consequence for the next decade. Here's the weird thing: One night, he SUDDENLY came to the realization that he should brush his teeth to avoid cavities, just like that! Not one argument in 4 months! No more yelling, "This is disgusting!" while he brushes. I don't even need to remind him. And, he requested a flouride rinse, which he actually uses!!! He was one month from getting his PANDAS dx. However, ds had, at this point, been taking an antibiotic for acne for 8 months. I credit a lot of milestones to his acne treatment. I guess what I'm saying is, you may not find an answer to the toothbrushing issue outside of having his PANDAS appropriately addressed. In the meantime, it may continue to be a battle. BUT, there is hope!

Hmmm... Not sure about what excuse you might offer, or if one will even be necessary beyond, "Dd is in counseling." A white lie as to her whereabouts might not be possible as you will likely need an excuse with the professional's letterhead to get these absences excused--in our state, it's a law. Last year, our ds could only get in to see his OT during school hours. Luckily, she had some flexibility with times (between 9am and noon.) I tried to vary the times so that ds would not miss the same classes every Friday. He presented his excuse every week, and no one questioned it (but it is a large high school.) Thinking as I type, though, this thought comes to mind: It might not be legal for them to ask why your dd is in counseling. Even conversationally, it would be rude of someone to ask. Maybe you could just be prepared ahead of time with some vague answer, just in case. Dd deserves her privacy unless you, as her parent, believe the school needs to have a heads-up on her condition.

I think we are very close to getting the PEX that my ds desperately needs. Since he has been on Augmentin for the last three months, I'm thinking that I had better make sure he is yeast-free before a PEX procedure. I've done a little research online, but I don't have any way of knowing whether the info I read is accurate and reliable. I'd like to hear from parents who have successfully treated a known infection. I have a few questions: 1. Is there a proven test for dx'ing a systemic yeast infection? 2. Would it hurt to treat for a "potential" infection, without testing for one beforehand? 3. Does anyone have any feedback to offer re the yeastinfectionadvisor website? Accurate, reliable? 4. Has anyone used Syntol? Success, failure, side-effects? Thanks for your input. We have been using Culterelle, but not as consistently as I'd like. Diet as a cure, or management of yeast will not work. Ds is 18, strong-willed, inflexible, impulsive (well, you get the picture!) He will not be cooperative if I try to mess with his food, that would be a huge deal-breaker for him. Thank you!!!

Everything everyone is saying makes perfect sense, and of course, what the PANDAS specialists say goes. But, here's my question: Won't a bout with the flu, or any bug for that matter, turn on an already overactive immune response? I know that with Lupus, I am hyper vigilant when it comes to germs because getting sick sends me into a months-long flare. I'm going to try to remember to ask Dr. L. about this. It seems to me that maybe administering a dead virus via vaccine might be better than risking the real thing in school. I'd like to hear your thoughts. I should add that my kids do not have immune deficiencies.

Could be yeast, but it could be the pull-ups, or a combination of the two. When my ds was that age, I could not use them because he got a horrible rash everytime we put one on. Just a thought. I'd probably treat it like a yeast infection and forgo the pull-ups. I used the washable crib mattress protectors and did a lot of laundry, instead. I hope your baby feels better soon!

Yes, I was there on Thursday and heard the same thing. Dr. Latimer seemed to disagree. So, it's all speculation really. However, I do know that they review and change their policies on October 15th, which seems really wrong since our contracts run Jan.-Jan. We are having the hardest time getting approval for ds17 who has lost 35lbs and continues to lose ground. CIGNA said that PEX is an elective procedure. Dr. L. filed a complaint with the Maryland Insurance Commision. If/when we get approval, we will start the process for dd12. I don't want to ask for two at once. All speculation aside, I, too, want my kids approved before October 15th, just in case. I'm editing my post to add this: The whole thing makes me sick, literally turns my stomach.

Welcome to the forum! You will learn so much here. I second the recommendation for The Explosive Child. I think you are doing all the right things for your son. You will get your sweet child back. I have no doubt!

My ds has been taking Intuniv for several years. I recently commented to one of his doctors that, while his hyperactivity is well-controlled, ds is still unable to pay attention. Conversations must be brief. He will rarely focus long enough to get through a movie. And, reading? Forget it! Interesting thing is, this doctor responded by telling me that Intuniv doesn't address attention! I later confirmed this with the prescribing doctor. Wish she would have mentioned that! Oh well, nothing else worked for him anyway. Sooo... I would only use Intuniv as a last resort if attention is a big part of your child's problem. Nancy, I'm going to look into trying zinc. Thanks for the links!

Sounds like a fabulous school! I just might be jealous. I agree with the others in that, if you trust this school and your ds's teachers, then stay out of things and let them take care of your ds. Even if he reaches an extreme state of anxiety, you need to hand him off everyday. When my dd12 was in second and third grades, she had exceptional teachers and aides. Most mornings, I carried dd to the car screaming, popped her, her shoes, and her backpack into the car, engaged the child-safety locks, and took her to school. I handed her off, grumpy at best, screaming at worst, to her teacher. It was awful, but dd was safe and in the hands of people who genuinely cared for her. As far as being a supportive parent went during homework time, I tried. I offered support, but I didn't take any abuse. When dd crumpled her homework and threw it, I flattened it out later, and sent it in with a note on it saying, "It was a bad night." She completed it at school. Because I know what avoidance does to someone with anxiety, I refused to allow dd to avoid (until I could no longer carry her.) She actually became confident midway through third grade, which coincided with a remission that lasted 2 years. Now, we are a year and a half into a relapse with avoidance/school refusal, and it just perpetuates itself--very frustrating! I find myself missing those days when I could carry her into the school. It was so much easier, and I could hold a job! And with ds, now 17, I like you found that the more I did to educate my son, the less the school felt they needed to do. They also felt they had the right to blame me when I could not get him to school (fifth grade) or keep him up on his studies. Trust me, leave the "burden" of education to the school--it keeps them accountable. Supplement during the summer, if you like, and provide all the extra-curriculars you want, but for the next 9 months leave the academics largely to the school. You have a big enough job in just getting him there everyday. Here's hoping you are a big, strong mama with a small son! Makes the job a lot easier!

I have an autoimmune disorder, and Imuran gave me my life back--I got to the point where I was barely functioning. Given that my ds is 18 in a few weeks, has a severe case of PANDAS, hasn't been functional in years, (and in light of my own history) I am thinking of going this route. Dr. L. was not opposed to the idea when I brought it up, but we did not discuss it at length. I think this might be different from chemo, but it is one way rheumatologist's keep the immune system in check.

I'm so sorry that things did not work out with getting that wonderful teacher. Try not to borrow trouble, though--HA! I need to follow my own words of wisdom! I am in knots over another school year beginning. For your dd, I see two positives. First, her K teacher was amazing, and is planning on communicating with the new teacher--she'll have to in order to be part of the IEP process. Second, having at least one educator on your side on the IEP team can make a HUGE difference. The other folks at the table will be more open-minded with "one of their kind" in your corner. And, let's not forget that your dd just might get another amazing teacher! Hang in there!