nicklemama

Well friends, the pneumonia DS8 was diagnosed with three weeks ago caused an exacerbation. DS just fell apart. The raging anger came back full force and he has a minor eye tic going on. He's obsessed w/ a computer game. Must play this game. You know the drill. We got no where w/ the ped. She would not run titers to see if he had mycoP. Urgent care gave him a zpack and I got nothing from the ped. After 3 yrs of PANDAS w/ DS, you'd think she would have read something or bothered to learn a little about PANDAS. We are moving on. Anyway, we are headed to Chicago on Wed. DS has his second IVIG on Thurs and Fri. Fingers crossed this works. He is 18 months post his first IVIG.

Count me in as one who does not see how I can possibly implement this. DS also does not have typical OCD. He's in an exacerbation at this moment following having pneumonia. I'll give you an example that just happened w/in the last half hour. He was on our computer. I was in our bedroom watching tv. Dh was in the living room watching tv. He walked into the living room and saw Dh on the tv and went stomping through the house angry and I could hear him say something about "the damn thing". He's not quite 9 and he's started cursing w/ this exacerbation. Oh, the joys. He stomps back to the computer, stays a minute, then comes stomping to our bedroom, sees me watching tv, goes back to the living room and begins to punch his bean bag chair. This part is good because its something we have worked on when he gets angry but he does not always take it out on the bean bag chair. He has said absolutely nothing to anyone but he's mad as a hornet and stomping around the house. Any attempt to reprimand him for his behavior or even ask him why he's upset will result in eruption and an all out raging anger. I don't relish being attacked, so I try and control myself so as not to set off his physical violence. He was 5.5 when this started and we could hold him when he attacked us. He'll be 9 at the end of Dec and he's getting too big to physically control, especially for me. Two nights ago, he didn't get his way or things didn't go as he perceived they should (can't remember what it was now) and he ran upstairs, slammed his door and proceeded to kick it and throw things around his room. We let him be because there is absolutely nothing we can do but make things worse. Please tell me how you get an out of control w/ anger child to think/talk to himself about how his thoughts are wrong and that there are better ways. When we try and talk to him about it later, he gets mad again. When he's doing well, he doesn't have these issues. We haven't dealt w/ raging anger in nearly two years. Its a new and different ballgame now that he's older. We leave for Chicago for IVIG on Thurs and Fri of next week. It cannot come soon enough.

Everyone in the family needs to be tested. This is a wax and wane disease. Ups and downs are to be expected. She's going to need more than the 10 days of amoxi and I'm guessing she's going to need something other than amoxi. Start printing out the literature. You can find a lot of it on www.pandasnetwork.org and take it to your ped. Try and get your ped onboard. If there is resistance, move on and don't waste your time and money.

FluMist set my DS's PANDAS off three years ago this past Oct. I don't advise it for anyone.

Hi Minette- I'm the mom from the parenting forum. Glad you made it here. You are getting good advice and I'm glad to see it appears there is a treating dr in Colorado. Looks like you have caught things early in the game and that is to your daughters advantage. It seems easier to treat PANDAS when caught early. I would recommend looking into the NIMH trial and see if she qualifies. I would also contact the above recommended doctor and get her in there right away.

Wow, we did not have that experience. We saw a reduction in symptoms in about a week but it took many, many weeks to get to a therapeutic dose. We'd see improvements, then backsliding until 100mg was achieved. Generic lamictal. Cannot remember the generic brand. Its been a yr since he was last on it.

I would be surprised if she had side effects after the first day. I don't think its common. DS was 7 when he had his first IVIG. He wasn't happy to have it but he managed. They did have to have a male nurse help hold him while the nurse inserted the IV. Once that was over, he was fine. He would not let them have his arm, so they had to hold his arm still. Side effects are common after the second day. My DS got sick about 18hrs after we left the hospital. If they get sick during the procedure, they are running the infusion too fast. One boy, who was 12, started not feeling well the second day and Dr K slowed the drip way down. DS had a bad headache, nausea and vomited a couple of times the next day, Sat. The day after that, he still had a headache. Was better on Mon and went back to school. He's scheduled for IVIG #2 next week. He's not upset about it. He's nearly 9 now and knows this will help him get well.

Thanks for that link. My son does not have Tourette's. He has PANDAS. He has tics during flares. He also has VERY low ferritin levels. It was 14 last time it was tested.

I would advise you to explore all avenues of infectious disease being the cause. I urge you to look into PANDAS/PITANDS/PANS. If I had believed the doctors we took our son to see, I don't even know where he'd be now. Read Saving Sammy. Check out the website http://pandasnetwork.org and http://webpediatrics.com (and scroll down to PANDAS/PITANDS. My son has PANDAS. Its not easy to find doctors who recognize and understand it, but they are out there.

Typical PANDAS symptoms for us. Nighttime is the worst time for the tantrums. He's in an exacerbation right now and headed to another IVIG in two weeks. Treatment for PANDAS relieved the tantrums, noise sensitivity and the other sensory issues he had. Touch was one of them but in opposite to your daughter. He craved touch, so much that he was throwing himself on the ground, running into us at full speed, running into walls on purpose, etc....

There is a lot of good information in this article. Of particular important to PANDAS parents and pediatricians is the info about drug resistance and abx preference. The only problem I see w/ this article is w/ pediatricians and their likelihood of thinking these guidelines would also apply to PANDAS kids. It does mention RF kids but I'd assume not many pediatricians relate the two conditions. Came back to add, you can access the entire original journal publication, Clinical Practice Guideline for the Diagnosis and Management of Group A Streptococcal Pharyngitis: 2012 Update by the Infectious Diseases Society of America, by clicking on the link in the first reference.

LLM said it all.......dosage and supplement. My DS sees a biomedical doctor who is treating it. DS takes B12 injections, P5P, a digestive enzyme, alpha lipoic acid, a multivitamin made for autistic kids, Omega 3 and 6, methylfolate. That's off the top of my head. I may have missed something. I recommend seeing a biomedical or DAN doctor for direction in treatment.

DS's first diagnosis was sensory processing disorder (before we finally figured out the PANDAS). He was in OT for sensory seeking. It helped some. It helped me learn how to help him get the sensory stimulation he was craving. In the end, all the sensory stuff diminished w/ PANDAS treatment. I would say its helpful day to day but don't look for it to help it go away. I think its tied directly to how well a PANDAS child is doing. Just my two cents.

My DS has had the stomach flu twice since PANDAS started. The latest was the second week of Oct. He never seems to flare up w/ stomach viruses. He is 10 days post pneumonia dx and he's having a terrible time. Last night was the worst I've seen him in nearly two years.

Don't forget to tune in.

I can't imagine yeast being a problem if you've only had 14 days of augmentin. Abx and steroids can cause increase in symptoms in the short term. We have seen this in our son. You should see some improvement after the steroids for a short period of time. Supposedly, that signals how effective IVIG would be. I can't really give you good advice on finding a local dr for abx. I've not been so successful, myself. There may be dr's in your area, though. Post where you are and those in your area can give you the best advice. Dr K is my son's doc, also.

I take Florastor every day and have never had trouble w/ it hurting my stomach. DS took it for two years and never complained.

Welcome. I would get to Dr Murphy as soon as you can. Amoxi is not all that effective on strep. You are so far ahead of the game than many of us. It took me more than a yr to figure out what was wrong with my DS. No doctor did. I figured it out on my own and then consulted w/ Dr T, who confirmed it. My son was adopted from Russia as an infant and was the healthiest child you could imagine. He is very bright and athletic. He was 5 when all this started. Its been a long hard road of 3yrs. I would drop the Tylenol and only give Motrin. Tylenol inferes w/ one of the brain chemicals. I can't remember which one at the moment but don't give Tylenol.

It hasn't hurt my DS. He's been on melatonin for 3yrs now. He started B12 shots back in March, on M,W,Fr schedule. He's sleeping much better but there are many factors that go into it. I increased his melatonin to 1mg, his doc added 1000mg taurine at bedtime. Melatonin is synthesized in the body from serotonin. Serotonine is synthesized from the tryptophan we get from the foods we eat. My DS has very low tryptophan levels or did have when we started w/ the biomed doc, even though I'd had him on a tryptophan rich diet, as recommended by Dr K. Since he has MTHFR mutations, I suspect he is/was unable to metabolize the tryptophan. Anyway, the point is, I've seen no harm in giving both.

Wow, they didn't tell me jack about anything. I was told he'd be feeling better by this evening. He is feeling better. He is not on treatment dose augmentin so it may have let something slip through. I am curious as to how he just suddenly turned up w/ pneumonia. He was not sick when I sent him to school on Friday and he was sick when he came home but not terribly so. He had a very low grade temp and he was coughing very occasionally. The only thing that set bells off is that he told me it hurt his chest when he coughed and when he would cough, he cried out in pain. I am going to take him to his ped this week for follow up. I do have a stethoscope. 24hrs after starting the azith, he is coughing frequently and productively and his temp has dropped to near normal. He's up and watching tv. Just finished playing Bananagrams with his dad. He doesn't know it yet, but he is not going to school tomorrow and then our school district is out on Tues for the election. I have been watching his fingernails to see if he's getting enough oxygen but the doctor at the urgent care didn't tell me to. She was really upbeat about how well he'd be by this evening.

Thanks. I'm keeping my fingers crossed too. Dr K is aware he has pneumonia right now. The hardest part is the wait and see. I'm going to take him in to see his ped this coming week. Anyone know when you should draw for mycoP titers? I am going to have them done.

Joyful- My son's handwriting is atrocious. He plays baseball, is on a swim team and is very good at tennis. You'd never know by looking at his handwriting. When we went to open house for his school in the fall, the class had drawn a picture and they were all hanging up. Dh and I, independently, looked for the worst one and asked DS if that was his. You guessed it. His art things look like a kindergartner did them. He's in 3rd grade.

It sounds very suspicious for PANDAS. I would also advise that I did not think my son had OCD either. OCD in children presents differently. I finally figured out, reading here, that the raging anger and defiance that my DS was displaying was in response to interruption of OCD. My DS counted everything, lined everything up perfectly (in his eyes) had to finish anything he started, including watching a tv program. He would NOT leave a tv program. When we turned the tv off, he blew up. In retrospect, he HAD to finish the program. It was part of his "just right" ocd. He had to say certain things before he brushed his teeth. We did know he was hoarding. He would not throw away the boxes that Dove ice cream bars came in and he "collected" pine cones and sticks. We just did not understand these things as ocd. Our son was also talking a lot about religion and God. We are not particularly religious people. He would confess to his every bad thought and worry about what God would think. There were many more than this but I wanted to give you an idea of just what ocd can look like in children. I bought and read the book "Freeing Your Child From OCD" by Tamar Chansky. It gives a really good understanding of ocd and examples. Here are some common compulsions in children washing and cleaning checking symmetry counting repeating/redoing hoarding praying/confessing These are common obsessions in children contamination harm to self or others (fear of) symmetry urges doubting scrupulosity/religiosity hoarding sexual themes (intrusive thoughts) I'd recommend reading this book and see if some of these things don't jump out at you. It was very eye opening and surprising to me.

He's on 500mg augmentin prophylactically and urgent care rx'd a zpack. I'm bracing myself for the possible storm to follow. I emailed Dr K and got a quick reply so he's aware and we are waiting to see what comes of this.

Just got home from urgent care. DS8 has been diagnosed w/ bronchopneumonia. He went to school fine yesterday. Came home w/ an occasional cough he said hurt bad. Had a slightly elevated temp. Temp kept rising, despite Motrin. This morning temp was 101.6 two hours after motrin. Urgent care did an xray to confirm pneumonia. Any experience? This is the first respiratory illness w/ fever DS has had in three years. In fact, the last time he had fever like this was his first PANDAS episode. Come to think of it, I don't think he's had a fever at all in the 3 yrs. He's had a couple of colds and a couple of stomach viruses in the three years. What am I in for? Came back to say, he was rx'd a zpack. He's on 500mg augmentin prophylactically.