bubbasmom

I'm trying to get information about strep in the gut, how its found, how its treated, what the effect it has on PANDAS. We are on our 2nd HUGE exaberation since September. And my kid is the one that gets violent with PANDAS so its physically demanding on me as well as the emotional stuff we all go through. My son is 13 next week. I'm almost positive he's the one I tested positive for strep B when I was pregnant with him and the articles on line say it can be transmitted to the baby. It also suggest that strep B is treated with IV antibiotics. Just trying a different approach. Anyone with info PLEASE email me on here because we gotta do something fast!

Okay I too would LOVE to hear of anyone that was 'cured' because to most of us it seems like it will NEVER end!!!

We are just this week beginning to think about the idea of allergies. Have not yet tested, only putting 2 and 2 together. My son has only had two 'professionally diagnosed" episodes with PANDAS. However, we are beginning to look at the big picture and realize that both diagnosed episodes are just after Labor Day. And many times around that same time frame we have been in the doctor's office with what is sometimes strep, sometimes not. So we will definitely be thinking differently this spring and next fall about allergy related exerabations.

If PANDAS is getting better with pregnancy, I thought PANDAS was a pediatric thing (that's the P). So I'm confused (again).

I was lead to believe, and I can't remember who all actually lead me to believe it, but that the "P" in PANDAS standing for pediatric means that they actually outgrow it around puberty or shortly thereafter. I know Dr. K was one that lead me to believe that. But what I'm seeing is that nobody can personally attest to this. There are people, like on Saving Sammy, that still take long term antibiotics as a young adult. Well, they apparently are still very worried about strep! Does anyone know of anyone PERSONALLY that has outgrown PANDAS. My son is 13, I have to say I really thought soon we would have the hope that he would outgrow this in the next couple of years. But I know there are parents that talk about their 15 year olds on here! Someone throw me a bone here!!!

WOW, very interesting. My son too is 12, although not his first PANDAS episode. He too is cutting molars like the other post said. He too is a little behind in his teeth cutting. Weird! But I have wondered if hormones are playing a role in this. I still think its PANDAS because we trace back to the strep each time, we have that medically documented. But he has suddenly started developing the 'teenage' body. My son has always been very muscular. His pediatrician predicts, according to his pattern of growth thus far, that he will be 6'4" and weigh 240 when he's an adult. Well at 12 he is now 5'6" and 140 so well on his way. But he hit a HUGE growth spurt since September when this all happened. He has gone up 2" inches in height, 2 sizes in jeans and 1 1/2 sizes in shoes. His body just looks more manly in shape, but not really a lot of other signs of puberty. That would be worth tracking - the hormones and all of this. By the way the main symptom with him is mood - rage - etc.

Wow a peaceful Christmas! That's my goal this year. I don't know if it will happen or not we're really riding the fence right now. Things are looking up, but you konw it's hard to let your guard down! All I want for Christmas is my son's life back.

My daughter that DOES NOT have PANDAS has huge pupils. She too has those beautiful blue eyes, so maybe its something more like that? My son that DOES have it, his eyes only dialate when he's in an 'episode' not all of the time.

Again, I think our kids tend to be a lot alike. I told my son I'm not even a parent anymore it seems like. I get no respect, I can't discipline, he just looks at me and he's going to do what he's going to do. He seems to feel bad about it, but that doesn't change anything. The one thing that does work for us, because my son is super super shy and totally lacks communication skills, he won't talk to me but will TEXT till he's blue in the face! So technically I yell at him by texting. Not during a fit of rage, but as it calms down. I'll text him " you were rude, disrespectful, wrong," whatever. Makes me feel a little better because I feel like I get to say my peace, and texting is sort of a 'calm' way of doing things. Like writing it gives you a chance to think about what you are saying, and there are no 'facial expressions or body language' to add fuel to the fire. But yeah, it sucks. I'm pretty sick of it and its only been three months for us this episode, he's had others. ONLY 3 months, my gosh seems like a life time, but compared to some people I know that's only a drop in the bucket.

DID YOU SEE BUSTER'S POST ABOUT FAQ'S FOR PANDAS. BUSTER IS REALLY GOOD, AND EXPLAINS THINGS VERY WELL.

I'm sorry to say that we too have been down that road!! Actually, threats of suicide during rage was my son's FIRST symptom of PANDAS this go around. Yes it's serious, Yes you cannot take your eye off of them. We actually did the opposite of worried dad as the Risperidal is what helped my son (for the moment) so everyone's different. But I did not take my eye off of him for 2 1/2 months!!! Literally he slept on the couch I sat in a recliner next to him setting my phone alarm for EVERY hour to evaluate him and make sure he was in a deep sleep. He was never out of my sight. He played outside I played out side, he went to the bathroom I stood outside the door. Every knife is hidden, every scissor, every upstairs room locked with a hidden key, he is NOT allowed up there alone, we have no guns ever, no chemicals in the house NOT EVEN WINDEX OR ANYTHING (they're hidden in the back of my van in a trash bag I get them - use them- put them back. No belts laying around to hang himself. No fireplace tools. NOTHING!!! Also school is aware of this in case he threatens at school. But for my son it came only in episodes. Fits of rage, so he wasn't constantly trying to. One fit, right in the beginning when I didn't know how bad it was I had to literally smack him to make a bottle of DrainO fall out of his hand. It touched his lips but I got it in time. I had to call the police that time. But if he goes on psych meds and you believe its worsening symptoms then GET HIM OFF OF THEM.

I'm so sorry you're going through all of this. Of course most of us on this forum would say YEP sounds like PANDAS to me. But getting the medical care isn't going to be easy, but can be done. So you will find many opinions many different doctors recommended but the basis are the same for most - lots of antibiotics (much higher doses than I'm sure you've ever used before) medications to control the symptoms just to make everyone comfortable including you, therapists to deal with OCD, any tics and whatnot - because it doesn't seem to matter what causes the OCD it can be handled much like regular OCD. But you will find much more educated, effective people than myself on here. So read through some of the posts. You'll see a Dr. K a lot of people use in Chicago. Its a trip but I believe most, including myself, find worthwhile. He will give you a starting point. Many other doctors that I'm not familiar with but people on here trust very much. You'll hear talk of IVIG - which is an IV infusion of immunoglobulin. Takes two sessions, back to back days, several hours, but can help kick-start his own immune system to kick the strep antibodies (which is what is causing PANDAS). Just get started as soon as possible with a doctor that you know treats PANDAS. The sooner the treatment the better. I would also feel free to email individual people on this forum if you see that their story applies to you to ask them questions. We're all here for the same reason, we have a child going through this, including me, my son is 12 we're in the midst of a 3 month episode of OCD, extreme rage, tics, sleep disturbances severe ADD, he too is a bright kid that got to a point where he could barely do school work. CHECK INTO HOMEBOUND FOR YOUR SCHOOL DISTRICT TO KEEP HIM FROM FAILING SCHOOL. You can visit pandasnetwork.org pandasfoundation.org Google Jamies Story or Nicco's Story You're getting a jump on it. You can do this. DR K IN CHICACO HAS A WEBSITE WEBPEDIATRICS.COM

YES ABSOLUTELY. I DELETED IT BECAUSE I HAD NO INTENTION OF UPSETTING THAT MANY PEOPLE. I WANT THE FOCUS TO STAY ON THE KIDS NOT THE MONEY WAS MY ONLY POINT.

But when taking credit becomes the focus the focus is no longer making your kid well it's about the bazillion bucks.

WOW! I'll go and delete my statement. For those of you who MISUNDERSTOOD! But it is frustrating to see the idea of PANDAS being turned into a profit margin! I really could care less if they do any of this. But the point was, that this is what was once a well intended project gone green - GREEN as in DOLLARS! It IS about the book now, it is about the competition of whose website and whose story and whose doctors. It is so obvious that these different ladies are in a little cat fight over it. If this has helped you guys then fantastic! I want this to be over for my family, you want this to be over for your family. I just getting a little irritated with the conceit that goes on "once again I've helped the world single handedly" and it goes on with a lot of people. I'm not singling out anyone person. Nobody has the cure for this! It's bad news. We can try to control the symptoms. Its ALL trial and error. What works for one does NOT work for another. What works one time, probably won't work the next time for the same child. The fantastic doctor for one is going to throw his hands up for the next. Its like diabetes or autism or any of these other horrible diseases.

Well I'm not a newbie and I'd like to know the three simple tests!! Is it something I've already heard of?

I appreciate what people are doing, Beth, Marcy, all of them. I just hate when people loose their focus. I don't think those people have been through one speck more than any else has. We all have kids with PANDAS, we've all been there, done that. Just strikes a nerve when money comes into play, and it DEFINITELY has for some. Perhaps I should zip it! But are you all on FB with these people? Its amazing.

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Yep me too. Is there anything we can do about it?

ABSOLUTELY!!!! My whole family is that way with medicines. They are not exactly the same drug because then they'd be the same brand. They might have the same medication in it but in a different kind of suspension or mix with different chemicals. My parents both can only do NAME brand of everything. And my son, we actually changed his Risperidal from two 1/2 mg tablets to one 1 mg tablet of the same brand. It was a disaster. So yeah if that's the case I would go to great lengths to insure you stay with that brand.

Got it!! I swear we should all go to medical school after this. After studying PANDAS it seems like the rest of it would be a breeze!!! Dr. Denna HERE! Antibodies don't last forever, but the body stores a copy of them so that it can mount a speedy attack next time it "sees" the invader. The antibiotics do not kill or fight antibodies- you're right about that. Abx are only to help prevent another bacterial invasion, so that future exposure does not trigger the production of more harmful antibodies.

I'm having trouble finding the Saving Sammy book and not that I have time to read a book right now anyway!!! So when you say Saving Sammy dose of Augmentin how much is that? Is that the 2000 mg a day the other mom was talking about?

I'm confused, and trying to help my son. If PANDAS is caused by strep antibodies attacking the brain, why the need for antibiotics? Does antibiotics help antibodies go away, or only bacteria go away. From what I understand, the bacteria is alreay gone that's why the antibodies has 'moved on' to other cells. Perhaps my brain is just fried (that's quite possible) and I'm not getting it. '

My son has such rage right now, we're in the midst of an 'episode' that there's no way he would cooperate with therapy. I wouldn't even be able to get him to go. He's very shy, he won't even talk things over with anyone including me. It's sad it really really is.