momtocole1

We talk to Dr. K. tomorrow but I wanted to ask the group about the blood test results we got back today to compare to their child's results. We are hoping that he gets categorized with an immune deficiency (aren't we all...) so that IVIG may have a better chance of being covered by insurance. Results: My son's result Reference Range IgG subclass 1 425 423-1060 IgG subclass 2 349 76-355 IgG subclass 3 41 17-173 IgG subclass 4 39 2-115 IgG total 860 821-1835 As you can see lowest numbers are IgG subclasses 1, a little low on 3 and IgG total is really low. the test states that there are new reference ranges effective 9/22/09, that is listed on the report. What is concerning is that because these numbers still show in the Normal range will they see a problem? Has anyone had numbers similar and it did help them get insurance coverage for IVIG. He also failed 6 of the 7 strep pneumanie strains he was vaccinated against. He is 12 (next week), so when he was a baby they only vaccinated for 7 strains vs. 14 now. The immunologist at UC Irvine did not seem overly concerned that he failed so many of those strep strains... His Antideoxyribonuclease-B antibodies were <50 with a normal range being <187 I have not a clue what that one even is... He has a vitiamin D deficiency, probably because he is too afraid to go outside usually... Antistreptolysin O was 87.2 which is ASO titers right? Oh, I read Busters posts over and over and I just can't get my head around this stuff. We all need a research scientists in our house! Thank you, Judy...

Uhhh, Rapid strep was negative. I guess it is just a viral thing. I have lost all objectivity here. My son is decompensating before our eyes. Screaming out, like full blown tourettes, afraid to leave the house. Screaming at me and crying and begging me to get the OCD out of his head. We had a culture done also just in case. I think it may be a food particle that is stuck (you pegged it Faith and Vickie) We also did a culture of my littlest son who has Down syndrome, that was so tough. He is tiny for his age. 7 years old and only 35 pounds and wears size 3T! He is a peanut but it took a doctor, two nurses, me and his older PANDAS brother to pin him down to pry open his mouth. He has super human strength. I just feel so sad about all this going on. His tonsils are absolutely huge, but not infected. I don't know why I'm talking about him, that is a whole other forum! Just venting I guess. I made 4 trips to the drug store today to try to get Ryan's steroid burst. It was a comedy of errors. We started it tonight. Please wish me luck... We are going to need, I so hope that it will lessen his OCD and tic symptoms so that he can breathe again. Thanks for putting up with my near panic attack. I have lost all perspective. I actually believe most people I come into contact with now have PANDAS! I saw a store clerk flip her hair today, and I thought, oh yeah, PANDAS. I need some serious help! I know that is no joke but I am looking through a very distorted lense right now... thanks, Judy...

My son started to complain of a sore throat last night. I looked in his throat and saw that his tonsils are swollen and his right tonsil has a white spot on it. We are going to the doctor this morning. His OCD symptoms and tics have been "through the roof" this weekend but some other good things happened so I was thinking it was a saw tooth type of healing that has started. He has been on the high dose Augmentin for one month, 1000 mg. 2x per day. Does it even make sense to have a rapid and culture? Won't it automatically read negative because he is on the Augmentin? Should I switch back to the Zithromax? We talk to Dr. K. tomorrow... Last night he just kept yelling for me to get the OCD out. He is doing OCD behaviors that have been gone for so long. It is like they are all jumbling together and cycling through very fast. Trying really hard not to panic. Thanks, Judy...

I do notice dilated eyes sometimes. I am going to start looking much more closely. It is so hard to tell with my son because he has such dark brown eyes.

My son is 12 (in 2 weeks) and he cannot swallow pills. I read or heard somewhere that one of the symptoms of PANDAS can be a fear of choking. I have read some articles with tips on swallowing pills. One time I was able to get him to swallow a fish oil capsule, but after that he was too afraid and would gag. We tried practicing with a favorite drink that I don't buy for home like sprite, we used tic tacs. He just can't do it. I would like to switch my son to the Augmentin XR, but it only comes in a pill form. Can anyone tell me their tricks for teaching their kids to swallow a pill? Thank you... Judy...

Okay, I have been posting like crazy because my son has had such a bad time of it the last couple of days. I talked to Diana Pohlman on Friday an she thought based on what I was telling her that this really may be part of the healing process. He still is in such a bad state, but he is slowly working his way out. I know this is a long haul. We haven't even gotten the IVIG yet, but I do think the high dose Augmentin is helping. Today I took him for a drive, he was crying off and on because his little brother was calling his name over and over. He was yelling out his "OCD words" which seem more like tics right now. Then he got really quiet. I asked him what was wrong because he looked so mad, the worst look on his face. After a couple of minutes he started laughing at something he saw and I asked him, what was going on because just a few minutes before he was so sullen, I mean reallly mad. He said, "Mom, I have to tell you something, I have made a decision... When we get home I am going to put on my Quicksilver Shirt"... My mouth just dropped open, He has not been able to put on any T-Shirts with ANY writing on them since July, over 3 months. He became deathly afraid of anything with the letter X on it. The Quicksilver shirt that he likes has the k on it that looks like an X. We have spent many a mornings arguing over what he can where. I had to go to Target and buy a whole bunch of solid color T shirts. Most of those were ruined because he was chewing on them. I know it seems so strange to be so excited over this, but this is a huge deal for him. He got out of the car and started saying, "hybrid, hybrid, over and over again. I realized that is written on my daughters little ride on jeep, that was next to his door when he got out, I guess he is just randomly seeing words and repeating them which is so strange. He went upstairs when he got home and put on the Quicksilver shirt. He wanted me to come upstairs because he was afraid to come downstairs with it on. I relaized he had it on backwards. He must have wanted the big Quicksilver word to be in the front. I didn't say a word, just gave him a huge hug. I am scared to even say this, but I do think he really is starting on the road to healing. The Augmentin is doing something. One other thing, As we were getting close to our house, I saw three boys riding their razors, they looked like my son's age. Just Hangin out on a Sunday afternoon. When I see these groups of boys out doing fun things I get so sad. My son is so happy and relieved that he can put a lousy Quicksilver shirt on without actually dying. Those boys don't know how good they have it comapred to my son. I don't want to discount what a great victory this was by feeling sorry for him, but I just can't help it sometimes. Thanks for listening to me vent. I don't know what I would do without everybody! God Bless Diana Too! Thanks, Judy...

Dear Vickie, You guessed it. He has a major handwriting issue. I really like your idea though and I could try to implement it on his laptop or he we could email eachother notes. Right now though, he is so severe that he is not able to talk about the OCD, hence the failure of cognitive behaviorial therapy and ERP recently. If he does tell me some little thing about it he then has to "undo" what he said. We have seen a small breakthrough as I mentioned yesterday, which is so promising. Thank you for the suggestions on looking at each day. Thanks, Judy...

Hi Faith, Wow, it is like I am looking in the mirror as far as what we experience too. My son is exactly the same. The behaviorist that we work with accused me of being a short order cook. He said, "your son just barks out orders and you follow them". He finally is starting to understand that what is happening with him right now CANNOT be treated behaviorally! We have tried every behavior program in the book. When he in this "state" we are abused parents suffering from Post Traumatic Stress Disorder. Hearing more about your son makes me worried about my next door neighbors daughter. She just started showing tic symptoms last week after being sick. I will post about it with more details. Her daughter is exactly like your son and my son at night. I think she has PANDAS but my neighbor won't believe it. Have a GOOD day, Judy...

I have tried motrin sporadically, I am going to make it part of the routine. i also give him a calcium and magnesium supplement that helps sometimes. He can't swallow pills, terrified of choking. He is 120 pounds. I give him 3 tsp of grape motrin (has to be grape! :0 ) I think he needs more because the label only goes up yo 85 pounds. If I go higher he gets a stomach ache! Thx, Judy

I know that so many PANDAS kids have sleep issues but I am trying to understand more about why... My son has mania at night. If I could switch it around and have him sleep all day and be awake all night, I feel like he would be so happy and I lives would be so much easier. I am trying to understand what is happening in his brain at night that makes him so much happier. He is like a different kid, most of the time at night, even when he is having a huge exacerbation of OCD and or tic symptoms. He becomes more playful, happy and loving. Now fast forward to the morning. I is like waking up a bear from a cave. It is like he has a split personality He is so upset and sad and mean. He does A LOT better once he eats breakfast. It is so bad sometimes that I wish that I cold put an IV in him while he is sleeping to pump him with nutrients before he wakes. I am wondering about his results on the Madelaine Cunningham tests and how these levels might play into the day and night stuff.., Anti-Lysoganglioside was higher then range Anti-Tubulin and Anti-Dopamine 1 was VERY high I think part of it is the restlessness that he feels that makes it so hard for him to settle down to sleep. I can hear him toss and turn for a long time. Although even when he is able to go right to sleep and get a decent nights sleep like 8 - 9 hours he is still completely exhausted in the morning. It is easy to see how people can confuse PANDAS with other types of disorrders. Bipolar kids can be manic at night. Some might just diagnose it as a blood sugar issue but it is so much more than that. Have a good night, Judy...

Thank you so much EA Mom and Buster, I will order rapid tests... You can buy a box (25 or 50 in a box) of rapid strep tests online (eg. Amazon http://www.amazon.com/s/qid=1258261560/ref...t=relevancerank ). We've used them. If neg, and you're still suspicious, you might still want to follow up with a 72 hour culture at a docs, but it's something for those in between times. You do want to swab the tonsils for best results so if your child is hard to swab you also might be better off going to the doc.

Dear Bubbasmom, I can completely relate to your frustration. I know that you appreciate all that he has done. I think some people can let a comment like this "roll off their back" and be grateful for the help this doctor has provided. For those that can let it "roll off", you are lucky! You have a gift... I don't have that gift. A comment like that would set me off completely. Maybe it is because I have been doubted for almost 5 years, because my son has had PANDAS for so long. When a doctor makes a comment like that, especially to a school principal it is devastating because I think that many of us feel like the school teachers and administators think WE as parents are making it up. They see our kids as having "issues", but many of them chalk it up to poor parenting. PANDAS is still so rare. Just the name is really ridiculous. People become glazed over sometimes when I explain what the acronym means. Some people look at me like I have Munchhausen (sp). I am so thankful that my son is not in public school anymore. That was the very worst. He can't even go to school right now. So, I feel your pain and I'm sorry that your doctor is such a bonehead, and thank goodness he can redeem himself by continuing to give your child the treatment he needs. Sorry, I am so wound up tonight... Thanks, Judy...

Everybody better just line up for a culture... I wish they would sell a home kit! I would stock up on it. I hate to take them to the doctor and expose them to everything else but it has to be done. Thanks everyone for the input....

Hi Vickie, The OCD is still too bad for him to tell me too much about doing his own ERP. He did tell me that he did one thing six times and he is petrified of six, so that is good news. Another really old tic came back today, where he forces air through his too front teeth. I wish someone had a hidden video of the look on my face when I hear an old tic from the past. My heart just about stops. The reason I am thinking it is a healing reaction is because the new tic goes as fast as it came, sometimes in a matter of hours. He is very engaged and playful tonight, but retracing all his steps. He is really worried about bad luck, since yesterday was Friday the 13th. I can't remember if I posted this already but last night when he accidentally slammed his fingers in the door he started doing push-ups frantically. Then his sister fell of a chair and hit her head on our desk and he started to do push ups again frantically. Then he started to beg all of us to start doing push-ups because a really mean boy at his school last year told him that bad things would happen on Friday the 13th if you don't do however many push-ups. This is just breaking my heart. I just want to do IVIG as soon as possible. Thanks, Judy...

Hi Colleen, He is on the "saving sammy" dose. 1000 mg of Aug. twice per day = 2000 mg. a day. He is 12 years old in two weeks and is 120 pounds. It took an act of God to get my pediatrician to prescribe such a high dose, so I don't know if he would be willing to throw another antibiotic on top of it, but I could try. So you think I should test all in house, even if no symptoms? I think I already know the answer. Thanks,Judy...

Dear Buster, That is interesting. I did notice that his sister is coughing for the last two days with no other symptoms. When you took dd9's sister for a strep test did she have a sore throat or any other symptoms of strep. Just curious. The peanut allergy theory seems very possible. It does seem like an allergic reaction to strep or even any type of viral thing in the house. We have not tested one sibling yet to see if he is a carrier because my pediatrician said that to be a carrier it means that you always test positive for strep. Since I have had him cultured before for strep and it was negative, I thought we were safe??? He has Down syndrome and it is so tough to get a culture from him. I did not understand the whole carrier thing until very recently and I thought my son with PANDAS would be okay as long as he was on the Augmentin. I also have been afraid to take his brother with Down syndrome to the doctor because he has been hospitalized three times with severe respiratory illnesses and at home on oxygen, so we try to stay away from the dr. if we can. I am going to take him to the doctor on Monday and get a rapid and culture, just to be sure. Thank you for the reply, Judy... This is a complicated question to answer. It is possible to culture positive for GABHS -- but I'd recommend if there is a sibling in the house, to culture the sibling. In our house, when our PANDAS child acted up invariably (90% of time) her sister was positive for GABHS. We think it is like a peanut allergy -- our dd9 is just really sensitive to it. I don't know how much strep invasion you need for a positive ASO and AntiDNAseB -- but even when both tests are used correctly at exactly the optimum time after a positive throat culture -- they still have a 31% false negative rate. ASO alone has a 46% false negative rate. What also has been interesting is when dd9's sister has a positive culture, dd9 is in an exacerbation (that's how we knew to bring in sister) but dd9 does not show positive ASO or positive culture. It just makes me think we're measuring sort of the wrong thing and that we need to measure sensitivity to GABHS rather than sensitivity to an exotoxin of GABHS. It's also possible it's a viral infection happening and it's just affecting the BBB allowing antibodies to cross. Really hard to say. Regards, Buster

Hi Faith, He is doing well with some symptoms. More playful, interacting with his sister more. He is acting really silly though, infantile at times. Playful mood is coming an going. It feels different that an exacerbation to strep because of some of the positives that are mixed in. I will look in his throat. Thanks, Judy

I have not posted in a while. My son has been on high dose Augmentin for 1 month today. He has had a huge exacerbation in symptoms in the last few days. He is saying that his throat hurts and his tics are over the top and OCD. How can I get a strep throat rapid or culture if he is on Augmentin. Won't it automatically come back negative. At first I was thinking that he was having a saw tooth type of healing that is starting, because some really good things are happening. He is telling me that he is giving up some of his OCD habits on his own. He told me yesterday that he is doing his own Exposure Response Prevention (ERP). That different OCD things are going away. The part that makes me think it is saw tooth type of recovery is that he is getting tics back that he has not done in years. It is like they are going in reverse order. Hopefully we are not too far away from IVIG. 1st phone consult with Dr. K is Tuesday, 11/17 and follow-up with Dr. Gupta, Immuno from UC Irvine on 11/23. What is so strange is that his old tics are all merge together and cycling in and out very quickly. Like certain words he used to say that were a tic are all jumbled together. He said his throat hurt last night. He won't let me look at it because I did not want to force the issue because he is in such a state and I figured it can't be strep while he on the Augmentin, correct? We are planning to start a steroid burst today, but I am so nervous because he is so volatile. His OCD was telling him to open and shut doors all day yesterday and he slammed his pinky finger in the door (accidentally). It is all black and blue and swollen, I' m not sure if it is broken, I don't think so, because he is able to move it. I feel so bad for him and I just want a doctor to swoop in and help him. I'm sure Dr. K will help. I just wish we lived closer to him or that I could get my son on a plane. He is just too unstable right now. Thanks for letting me vent.. Judy...

I took my son to see Dr. Sudhir Gupta, Immunologist at UC Irvine in So. Cal. I don't know why I felt so defeated. I already knew that he was not well educated on PANDAS. On my son's bloodwork he had negative strep titers and his Anti-Dnase B was normal. The doctor said that he is concerned that those are the indicators of PANDAS. I told him all about Dr. Cummingham's test and that my son's Cam Kinase II was at 165. He looked at me as if I were a martian. Again, I should not have been surprised by this. He has only treated a couple of children with PANDAS with IVIG. The biggest problem is that I did not have my son's IgG numbers from the lab. They did not get enough blood, so they could not run them. Now I have to take him to the lab for the third time. Dr. Gupta said, "Well, there has only been one study on PANDAS and Dr. Swedo isn't really doing anything with PANDAS anymore. I tried to show him the JNI article on the CAM II and he just glazed over again. I just burst into tears, I put my hand on his arm and said, can't you please help my son. He is so pale, he has huge dark circles under his eyes. He keeps getting impetigo sores on his mouth and he has severe OCD. He said, that I should get the blood work done and he would see us in 2 1/2 weeks. We have a phone consult with Dr. K. on November 17th and I'm sure that will be really insightful, but in the meantime, I feel like we need to move to the East coast. The doctors there are so much more open and well educated on PANDAS. He also said that Blue Shield of California is the very worst at covering IVIG, which really sent me downhill. I just wish that money was no object and that my son was not so full of anxiety and I could just get on a plane with him and fly to Chicago or Maryland to see Dr. K or Dr. Lattimer. Sorry, just venting. I don't even know what to show him when I go back, but I am going to create an arsonal of information. Diana Pohlman is going to help me put a "book" together for little Mr. Dr. Gupta to educate him on PANDAS. Lots of Luck, right... Sorry so negative, I'm just so sad. My son was doing so well on the high dose augmentin and ever since his dental work last week, he has been backsliding quickly. Thanks for listening/reading... If anyone has anything for my arsonal, please let me know... Judy...

March 1, 2009, Browneyesmom Return to Latitudes Home Page (www.latitudes.org)IPB PortalHelpSearchMembersCalendar Logged in as: momtocole1 ( Log Out ) I was searching older posts for help in how to communicate with my son's school about PANDAS. I came across this list compiled by worried dad back in March of this year. I printed all of these and I am going to highlight them and give them to my son's teachers. They were so helpful, Thank you to all that compiled these. The one that was the most helpful was written by an adult who had Sydenham's Chorea. It was so enlightening and gave me insight to how my son is suffering while trying to stay still at school. What was helpful was to see it explained as PANDAS basically being "Atypical Sydenham's". I swear they should just rename PANDAS Sydenham's II. Then we could get antibiotics for our kids until there 21 without a blink of an eye and most likely get much better insurance coverage for the IVIG or PEX. Also, it would help some of these stubborn doctor's to look at this as a serious disease. In one of Dr. Cunningham's quotes she states PANDAS is like a rheumatic fever of the brain. I may not be quoting it exactly right, but that is the gist of it. I mean what is it going to take to get these doctors on board. I know there is another way to just link this page to that old post or "repost" the old post, but I'm sorry I don't know how. So I just cut and pasted it. I hope this is helpful, it really helped me... Good Night... Judy... My Controls · View New Posts · My Assistant · My Friends · 0 New Messages ACN Forums > Advanced, Complementary, and Alternative Approaches > PANDAS Need to help school understand PANDAS, Any good research studies? Options browneyesmom Mar 1 2009, 05:13 AM Post #1 Advanced Member Group: Members Posts: 67 Joined: 9-February 09 Member No.: 3717 My daughter has missed a lot of school this quarter and there have been many more days that she has been late for school in the mornings. However, she keeps a lid on her emotions while at school, does not tell anyone there about her auditory/visual hallucinations, they seem to think that her schoolwork struggles are actually a result of her absence issues (they have no idea how much we are working with her at home), she never has enuresis there (thank goodness), she does not talk so much about her worries there, they don't see her separation anxiety, baby talk, and they have plenty of other kids to watch, etc., etc.... I'm sure you are all rather familiar with this story yourselves. Thus, my problem is that they do not see at school... what I see at home. She is on round 3 or 4 (we are uncertain about a time in Dec) in a row of strep infections and although she did improve dramatically on Amoxicillin with the last infection, she has been doing worse recently with this last one and we have not yet seen improvement. She is currently on both Augmentin and Azith, since Weds. She has several assignments due this week and next and I am not sure at this point, if she is going to be able to complete them on time. Yesterday, we worked on them a good bit, but she had a lot of points where she kept saying it was "too hard", which is very much like what I heard when she was going through the worst of it and her grades plummeted the first few weeks of this year. I want to help her school/teachers understand what she is dealing with here and just how debilitating this is for her, but I'm uncertain how to clearly convey this AND back up what I say so they believe me, rather than think I am slacking in parental duties... which honestly, I think is what some of them think at this point. I don't know about other places, but here, it can become a court issue and frankly, we're going through enough without adding that to the mix. What we need, is for them to understand and support her right now, but it seems that PANDAS is so poorly understood (unheard of) that all they are able to wrap their heads around is that she is having strep throat infections and they just do not comprehend how that could cause all this trouble for her when it does not for other kids. Does anyone know of ANY research studies ~ or ANYTHING else that might help me in educating them about PANDAS? I appreciate any input you might offer! Thanks so much!! Replies Worried Dad Mar 1 2009, 06:33 AM Post #2 Advanced Member Group: Members Posts: 184 Joined: 12-August 08 Member No.: 3408 Hi, browneyesmom: This is a tough one, for sure. FYI, you may already have seen this, but this very site (ACN / Latitudes) has some great articles about tics, OCD, autoimmunity, and PANDAS. You can check it out here: http://www.latitudes.org/anxiety_ocd.htm In particular, this article really stood out to me: http://www.latitudes.org/articles/vojdani.pdf When we first started struggling with our son's illness and inability to attend school, he was diagnosed with acute rheumatic fever with Sydenham's chorea rather than PANDAS. We spent much of our online time on an SC forum back then. One SC sufferer (wenwill, who also happened to be in the healthcare field) posted a really great series of posts about SC kids and school. We printed it off and gave it to our school administrators, and it seemed to help them understand some of the issues. You might consider giving this to them and explaining that PANDAS is basically "atypical Sydenham's"; it's got some great info. Here's the link: http://www.wemove.org/cgi-bin/ultimatebb.c...opic/13/59.html Hope that helps. I haven't come across a good "peer-reviewed article" that covers the full, nightmarish spectrum of symptoms these PANDAS kids suffer. Wish I had! michele Mar 1 2009, 07:43 AM Post #3 Advanced Member Group: Members Posts: 943 Joined: 4-January 07 From: n. canton, ohio Member No.: 2172 I have been struggling with this same issues for two years with the school. They don't get it and don't see it there. In my opinion they should be thankful he is so good there and not melting down. However we all know kids with behavior issues at school get more attention from the school staff. Either way they would think it was a parenting/discipline issue. I brought in many articles, some on tourettes from TSA because they have some great ones on school issues. However the one the school seemed to get the most from school nurse. It was on PANDAS in schools. The teacher said she would pass it on to all those who work with him. I don't know that it made a huge difference in her attitude though because she thinks he can just stop doing verbal tics at home. We all know that with tics they can hold them in for so long but eventually they have to let them out. I think that movie on Hallmark was good about the teacher Brad Cohen who had TS. http://www.tsa-usa.org/educ_advoc/morethantics.htm http://www.schoolnursenews.org/BackIssues/.../pandas0903.pdf http://corporate.hallmark.com/Current-News...nt-of-the-Class QUOTE(Worried Dad @ Mar 1 2009, 09:33 AM) Hi, browneyesmom: This is a tough one, for sure. FYI, you may already have seen this, but this very site (ACN / Latitudes) has some great articles about tics, OCD, autoimmunity, and PANDAS. You can check it out here: http://www.latitudes.org/anxiety_ocd.htm In particular, this article really stood out to me: http://www.latitudes.org/articles/vojdani.pdf When we first started struggling with our son's illness and inability to attend school, he was diagnosed with acute rheumatic fever with Sydenham's chorea rather than PANDAS. We spent much of our online time on an SC forum back then. One SC sufferer (wenwill, who also happened to be in the healthcare field) posted a really great series of posts about SC kids and school. We printed it off and gave it to our school administrators, and it seemed to help them understand some of the issues. You might consider giving this to them and explaining that PANDAS is basically "atypical Sydenham's"; it's got some great info. Here's the link: http://www.wemove.org/cgi-bin/ultimatebb.c...opic/13/59.html Hope that helps. I haven't come across a good "peer-reviewed article" that covers the full, nightmarish spectrum of symptoms these PANDAS kids suffer. Wish I had! Posts in this topic browneyesmom Need to help school understand PANDAS Mar 1 2009, 05:13 AM Worried Dad Hi, browneyesmom: This is a tough one, for sure. ... Mar 1 2009, 06:33 AM michele I have been struggling with this same issues for t... Mar 1 2009, 07:43 AM browneyesmom I agree with EAMom that I wasn't so crazy abou... Mar 1 2009, 05:25 PM browneyesmom I agree with EAMom that I wasn't so crazy abou... Mar 1 2009, 05:32 PM browneyesmom Still reviewing... never did get the homework comp... Mar 1 2009, 05:22 PM amy s you could pass along this info... http://www.k12a... Mar 1 2009, 07:21 AM EAMom I did have an issue with this part of the k-12 web... Mar 1 2009, 08:34 AM browneyesmom I have requested that our pediatrician write a let... Mar 1 2009, 09:15 AM browneyesmom Thanks for all your suggestions and input!... Mar 1 2009, 10:07 AM michele I am trying to meet with an educational consultant... Mar 2 2009, 10:53 AM browneyesmom Thank you!! I will check out Wright's... Mar 2 2009, 03:02 PM « Next Oldest · PANDAS · Next Newest » 1 User(s) are reading this topic (0 Guests and 0 Anonymous Users) 1 Members: momtocole1 Lo-Fi Version 0.2969 sec -- 11 queries GZIP Enabled Time is now: 1st November 2009 - 11:01 PM Powered By IP.Board 2.2.1 © 2009 IPS, Inc.

This is so great to see something written by someone that was no antibiotics for years and stayed free of strep infections because of it. Yes my son is on a high dose of antibiotics. Augmentin 1000 mg. 2X per day. We have been on that high dose for about 16 days. We saw remarkable improvement in his OCD symptoms literally overnight, which continued until we had to get some intense dental work (3 teeth pulled) last Wednesday. He went form shedding OCD behaviors on a daily basis to picking up some old and new ones. I am hoping that once the nitric oxcide (sp) is finally out of his system that we will continue to see him shed OCD behaviors. We are also concerned about strep getting into the areas where the teeth were pulled. We see immunologist at UC Irvine on Wednesday and I cannot wait. I hope this helps.

The dose that really helped Sammy from the Saving Sammy book was 1000 mg 2X per day. That is what we started doing for my son. He will be 12 years old next month and is 118 pounds. We started this higher does on 10/15/09. We saw so many gains, he did have a backslide over the last few days because of dental work, but I am hoping that we will continue to see him shed OCD behaviors which he was doing. Talk to your doctor about raising it if you don't see positive results at the 1200 mg. I saw some improvement at 1200 mg, but saw significant improvement at the high dose. Take a look at the posts from worried dad too, they have tried so many things to help his son and he is seeing the most positive results form this higher dose of augmentin. Thanks, Judy...

Thanks Peglem, Does DD6 mean daughter 6 years old? The DD threw me off a little... I don't think we have a list, but please, if you see an acronym you don't know, just ask.

I was trying to find a place on the forum that explains some of the acronyms on the forum. I saw a chart at one time, but I don't know where it is located. For example if someone says dd6, do they mean daughter 6 years old right? If anyone knows where to find the key for these it would be such a big help to me. Thank you...

I am just so upset that I did the dental work for my son last Wednesday. He has been in a spiral since. He was doing so well on the high dose Augmentin. Then we had three teeth pulled. I don't know if he is reacting to the laughing gas or if strep has gotten into the open soars. I really felt like it was safe to do this long awaited dental work because he was on the Augmentin. He has huge canker soars on the inside of his bottom lip, there is one in particular that is about 1/4 inch in diameter. His bottom lip is still swollen and it has been 4 days since the work. There was another Mom named Susan whose daughter had a bad reaction to dental work. Susan, if you see this post will you let us know how your little girl is doing. My son is doing a lot of the retracing again and retouching of objects and so volatile. I just feel so sick over this. I will not be taking him to the dentist for a long time, not until he is completely recovered.