thereishope

upper respiratory infection? It wouldn't be Mycroplasma Pneumonia, would it?

Sorry. I just read your other post. Your son is still on the steroids. I'm assuming it was a taper down and he is now on the lowest dose? Steroids do lower the immune system, so again, I agree to up the Augmentin if others have strep.

Welcome. So, you noticed him backsliding a week after being off the steroids? Unfortunately, for most, steroids are a temp relief of symptoms and most do see backsliding once off them. The time frame for this varies. If your son is off steroids, you can try givign Ibuprofen and see if that eases his symptoms. Once again, it is a band aid and a temp relief, but it does help a good amount of kids. Seeking answers to a permanent solution is needed even if Ibuprofen works. I also agree with raising the Augmentin, esp since you just found out others in the household had strep. Once the other family finish their meds, be sure to take them for a follow up strep test 3 weeks after last dose to ensure the strep is gone.

From the PANDAS FAQ page http://www.latitudes.org/forums/index.php?showtopic=6266

I know a couple of kids who have had MRI's and one whose son is now a teen and the dr does MRI's every so often on him. He does have seizures though. I believe MRI's may not show much. I think I remember reading the swelling may not show up on an MRI and there isn't white matter or gray matter (I can't remember what color-it's too early in the day)with PANDAS that would distinguish permanent damage (thank God). Your son is still in his teens. The brain isn't done fully developing until early 20's. Yes, he's gone through puberty but the human brain is amazing. Make sure he is taking supplements like Omega 3's that will help his brain heal.

I'm on many forums and groups and encounter a lot of people. Only once did I have an African American contact me about possible PANDAS. When I followed up with her she said her son received the dx of chorea and she dropped the PANDAS search. She was a parent whose child had strep then received the H1N1 vaccine then had tics and such. A good person to contact would be Diana Pohlman. I doubt she asks people their ethnicity, but perhaps a few have offered this info to her. What percentage of those afficted with OCD and TS are African American?

Before I answer, for the first question, are you referring to a PANDAS reaction? Example, my son got the chicken pox rash, but it wasn't a PANDAS reaction. It occurred years prior to his first strep infection and PANDAS surfacing.

I think these kids are an unofficial experiment for everything. Now we just have to hope that these kids are documented somewhere so if and when they start studies they have an idea of where to start with what works and we don't have to wait 50 years for them to figure it out.

None of my kids have an allergy to penicillin.For some reason all the ped's I've encountered prescribe amoxicillin over pen. I know it's in the same med family. My mother had a severe allergy to it. However, my sister and myself do not. I took penicillin a lot as a child due to recurring tonsillitis.

Well, Lisa, that 5 months was hard, but when I look at some of the struggles others on here have, I do realize how lucky we were/are. I have him back now. That's what important:)

Yes, doctors give amoxicillin and penicillin prophylactically. My son took it for months leading up to his t and a. It was still give twice daily, though.

Welcome. If you click on this thread it will bring you to Amelia'a post. Her son's first PANDAS exacerbation was also triggered shortly after H1N1 vaccination. There was another factor such as a sinus infection. I cannot remember if the infection was detected prior or after vaccination. Perhaps the two of you can "share notes". http://www.latitudes.org/forums/index.php?showtopic=7059 Please make sure to notify the makers of the vaccine, VAERS and NVIC. If your son received the nasal spray, did he get checked out for a sinus infection yet. I believe congestion and sinus infection did follow people (not PANDAS) weeks after the vaccine was administered. Sometimes sinus infections can be so deep and hidden, only a MRI will detect it. Sinus infections are notorious for PANDAS exacerbations.

Prednisone is used for different reasons. For some it is used as a diagnostic tool to help the dr determine if it is PANDAS and to see if they are a good candidate for IVIG. Some have seen that it does help with the recovery itself. During my son's second exacaerbation, The steroid jump started recovery. He did not backslide after going off the steeroid as is the case for a good number of PANDAS kids. Its very important to add that my son received his 5 day burst only 5 days after started abs for a strep infection and we caught that infection very fast. How long a burst did he have? 5 or 30 day? For 5 days, weight gain shouldn't be an issue. For the 30 day, it might be. Is he very conscious about how he looks or "overly aware" of imperfections? If so, then relay that to Dr B. You don't want to add more problems into the mix if weight gain does occur. There are other things that have anti-inflammatory properties such as Ibuprofen, Zithromax, and certain foods like pineapples. However, I think steroids would achieve the biggest change in inflammation. Buster has a section about steroids in his FAQ page you can reread for more info on steroids and PANDAS http://www.latitudes.org/forums/index.php?showtopic=6266

Cheri, For TS, it's the fish component that makes them tic worse?I have seen vegan Omega 3's made w/o fish oil. Do you think that would be okay to suggest?

Here's a thread to a similar question. Surprisingly the majority was eastern european and I think England http://www.latitudes.org/forums/index.php?...4&hl=poland We're Polish here. Both myself and my huband.

http://news.cincinnati.com/article/2010022...+bipolar+remedy UC studies fish oil as bipolar remedy

I'm sorry your day started like this. It's normal to feel like the abused parent. That frustration that builds up in our gut is so hard to suppress sometimes. I've said things I've regretted a second later. I really have found that leaving the room , pacing, counting to 10 over and over and over, etc is really the only things I can do try to get over that frustration and anger hump. Maybe even a stress ball you can squeeze over and over will help. Just something to filter your frustartion. If you want to try to help her, and I have a feeling you've done this already, take her hands into yours, make eye contact, and breathe with her. At first my son fought it but now he'll actually tell me he needs me to help him breathe a few more time. I do the basic "Take a deep breathe, pause, now exhale slow". Don't tell her to get over it or it doesn't matter about calculating things because to her it is everything at the moment. She'll think you're against her.

Welcome. I once did a poll about this. http://www.latitudes.org/forums/index.php?...ic=5488&hl= My son had a + strep test one month after t and a. Very sad since he was in complete remission at teh time of surgery and we then went on to experience a 5 month recovery from PANDAS. I admit, the odds were against him for catching it. At that time, all 3 of my kids had strep. And from what I understand last year was a very bad year for strep in my area.It was the first the other non-PANDAS kids tested +. It was also at that time I realized all 3 of my kids (not just the PANDAS one) do not get symptoms of strep. My 2 other kids skipped and giggled all the way to the dr for their swab. Hence why it is important to rule out all family members every time someone has an infection. Now for some hope. I know some PANDAS kids go to have chronic strep even after surgery, but my son's last strep infection was the one after surgery. He has been strep free since March 2009. So even though I know he can always contract it again, I willl never know how many times the surgery prevented an infection.

For those starting meds for Mycroplasma, others have noted their children started a cough a few days after beginning them. Michael from Tampa did too. So don't be freaked out if that happens.

Here's a link to the PDF of the entire issue. The top of the first page has a headline stating what page the article starts on. It is different than the Throat to Mind one. https://myportal.bsd405.org/personal/sutton...20Prejudice.pdf

Pregnant women were thrown into the "high risk" group and highly recommended to get it. Swine flu never became mandatory here for the general public. Well, maybe on military bases, not fully sure. As for med professionals, I think it was mandatory. I remember one nurse was put in the headlines when she refused the vaccine and was told she couldn't work if she didn't get it. That went to court. Anyone know the outcome? Sadly, schools became sites for admisitering the vaccine and some kids were accidentally given the vacines even when the parents didn't consent to it. One of those accidents was a child with epilepsy that was then rushed to the hospital.In my district, elementary was done after hours witha parent present, but middle school and high school was done during school hours. In my district, the vaccine was given for free. PANDAS kids that did have an exacerbation of symptoms should report it to VAERS and NVIC. I know of one mom that did and she was told by the vaccine company that her child was the only one who had a reaction like that. I will add the clause that not all PANDAS kids had an adverse reaction, but some did. Here's a link to an old thread I did about reporting vaccine reactions.. http://www.latitudes.org/forums/index.php?...ic=6707&hl=

Yes, the website I learned about this from said the same thing. They need to find somethng to do with all the vaccines they already paid for. I just left that off to make the post more objective:)

Wanted to post this since some PANDAS kids have had negative reactions to the swine flu vaccine... http://www.google.com/hostednews/ap/articl...1GlGfQD9DUH8G80 WHO: Add swine flu to regular flu vaccine (AP) – 2 days ago

I asked about the timing of the negative strep tests because if the child is on antibiotics at the time of a swab, you can get a false negative. This is true for a timeframe after taking abs as well. Here is a segment of the PANDAS FAQ page that explains the ideal timing to try to get the most accurate results... http://www.latitudes.org/forums/index.php?showtopic=6266

Here's some more info from the PANDAS FAQ page.... http://www.latitudes.org/forums/index.php?showtopic=6266