P_Mom

From what I have seen with my own eyes, I agree completely. Plus, the Doc told us the risks of what srtep could do to these kids far outweighs any risks from the antibiotics...I give it with confidence.

Did he actually contract the strep while on Azith or did the symptoms increase just from the exposure? I have read of reports of Azith starting to become resistant to strep in the mid-west.

Great news and it does help to hear these success stories. One question..is your son on preventative antibiotic?

Jasminky, Just something to take into consideration regarding the Nasonex. Nasonex is an anti-inflamatory 'allergy' medication, but, its main purpose is to reduce swelling in the nasal passage to allow for easier breathing. This medicine accomplishes this with the steriods that are in it. (steriods are anti-inflamatory and they supress the immune system) Just for you info., steriods can have a DRAMATIC effect on NOT safe to use long term. Although the Nasonex has only a small amount of steriods in it, perhaps there was enough to get into your daughters bloodstream and cause this reduction in tics. Just a thought I had when I read your post. Being she has responded to antibiotics, I would personally lean to the PANDAS side of things. My older son ticced and had mild ADHD issues, and when he took antibiotics, it all went away. When he stopped the 10 day course, he still did well and ticced occasionally. He got sick again, tics majorly increased, went on antibiotics, and they went away. After the course, again, he still did pretty well, ticced occasionally. Blood work showed only borderline aso,(6 months after strep), still considered normal titers for strep. But, based on symptoms and how the onset of it all occured, (not necassarily the subsequent waxing with any illness), and because of his response to antibiotics, he is considered PANDAS. He has been on prophylaxis PenVK since January, and he is doing fantastic. It will be coming up on two weeks without one single tic or ADHD behaviors, (that is a long time for us so far), and the best thing about this is that he is ill right now with fever, cough, stuffy nose, etc. and he still has shown no symptoms of PANDAS or tics, etc. This is the first time for no symptoms with illness, but, it is the first time he has been on the prophylaxis while ill. My younger son is doing great, too. He has very mild behaviors, no one would notice, but, he is also ill, too, and this is what I attribute the behaviors to. But, they are so mild, I really am overall quite grateful how well they are doing. By the way, he is also on Pen VK. Take care. Kelly

My son was as healthy as a horse with this virus he had too, except for the rash.. Diagnosis was made purely by looking at the rash, and being told it was viral. For virusus, there is nothing you can do but wait it out. It only lasted a few days. Kelly

Hi, I know of some people who have had success getting their insurance companies to pay for it..really..that is something you'll just have to check into...some companies will, but, don't be surprised if yours doesn't. What antibiotic is your son on? Some antibiotics work better than others, also, sometimes these kids will still have symptoms even when on antibiotics, but, their symptoms should be improved and easier to manage. Symptoms that come and go with PANDAS kids have alot to do with to illness, any kind, and just exposure is sometimes enough to cause an increase of symptoms, also, once this disorder begins, there are other triggers that cause an increase. As far as IVIG or Pex.. no, we have not gone down that route, we don't need to at this point. But, if things got bad enough (I pray they don't) and other treatments were failing, IVIG is something we would consider, I know personally of people who have had complete success with it, and their children are considered cured! The whole PANDAS thing, for whatever reason, still remains a controversial diagnosis (unfortunately), and, therefore, I believe that is one of the reasons that IVIG hasn't been accepted as a standard treatment for PANDAS, afterall, the disease itself hasn't been universally accepted. But, I do know it has been extremely successful with some kids, but, it also has NOT helped others. Hope this helps . Kelly

Just a thought... you are noticing a rash on your son... "small circular red spots on his back and chest." Well, my son had these same spots on his back and chest, well, atleast they sound like it COULD be the same thing, and his tics were noticeably up at the same time. This rash was caused by a virus, which the only sign of this virus my son has was the rash. For us, the virus was what caused the increase in tics, and we wouldn't have even know it if it weren't for this mild rash. Perhaps you are experiencing the same thing. My son also had about the same number of spots on him, and believe it or not, both my sons had one small patch of dry skin which looked like exema on their chins.

Faith, Yes, I have two boys with this. My youngest manifest first and worst, so, when I began to post, it was only regarding him. He manifest 3 days after strep, my older son manifest about 6 weeks after. This was my younger sons second episode and my older son's first episode, that is why the time frame difference. With each episode of strep, symptoms come on faster and harder. They are both on Pen VK twice daily and doing well. My younger has/had tics and bad ocd, my older manifest with mostly tics and some mild ADHD issues. I do believe once their systems are set into motion for this..any sensitivity can aggravate it, that is why I want testing done just to make sure I am not missing anything. God Bless. Kelly

Lisa, Right On!!! Sounds like you occupy a little space in my mind! AMEN!! I may actually not be nuts!! You got me 100% on that one! Kelly

Oh my gosh, please forgive me, I did it again! I strongly suggest you have those blood tests, ASO and AntiDNAase b titer, ran. Just request them and get them done when you go in for the antibiotic, I wouldn't wait to long. Kelly

Judy, Sorry I am posting so much right now, but, I keep thinking of stuff after I log off..Plus, I can feel the pain in your words and it takes me back to where I was in the beginning..and I really want to help you. Ask the doctors to basically "humor" you and give you a 10 day supply of Zithromax. That is the antibiotic that PANDAS moms have the most success with. Please keep us posted and I will say a prayer for you tonight. Kelly

I have learned through this experience that most Dr.'s do not have the answers for this and I have run into a brick wall with many. Keep looking for one that will listen to you and be willing to help. Sometimes you may have to actually guide them through this and tell them what you want them to do. Keep fighting....you'll get there.

Oh my gosh, I just read that he had Strep throat. Please look into PANDAS!! Strep started it all with my kids!!!!!

Oh, I just wanted to say... when you say "I know in my heart they are missing something," you are probably right. God whispers to our hearts and you can never go wrong when you listen to that whisper.....

Judy, I got chills when I read your post and my heart goes out to you. When all us Moms read posts, we all see different things in them. Of course, we all naturally go toward our own experiences, and then try to relay help. We all have such dramatically different experiences with what works for our children, I'll just let you know what I saw when I read your post. Okay, the fact that this came on suddenly with fever (indicator of illness/infection of some sort) leads me down the PANDAS/PITANDS avenue. I think it is easy for a doctor to make a diagnosis of a tic when he sees it, there really are no tests to determine tics, you just observe them. The confusion comes when it comes down to whether it is transient, chronis, or TS. And then, what is the cause? Time answers those questions.. Anyway, your Grandson started the Zpack and seemed pretty much okay, then was fine at the pediatrtition, so they gave him the Varicella (chicken pox) vaccine. I believe the shot was what made him worse. This is not meant to make you feel bad about the shot, we give them because it is what the doctors say we are supposed to do, and we trust them. Also, remember, this is just my observation on your situation. I believe there is an aggravated immune response responsible for your Grandsons condition, and this shot just sent the immune system into overdrive again, resulting in the tics/behaviors he is having. (why did they prescribe an antibiotic to begin with?) I would get these tests done, ASO titer and AntiDnAase B titer. (mycoplasma and Epstein barr are good titers to get ran also) These may possibly be elevated and start giving you some answers. Also, please, please try to get your hands on an antibiotic again and give a full course, REGARDLESS of the presence of any type of infection or illness, you are just gonna have to plead with the docs to give it a try, it won't hurt. The antibiotic may help your grandson's condition tremendously. Kelly

Thanks Tami. I'll go Google myself and see what I get!

Question..this just popped in my head because I was thinking about trying Treelac. If Threelac, (or other anti-candida products) kill candida, would it also kill antibiotics you take, thus rendering them ineffective?

Yes, I agree with Chemar. Both my kids are PANDAS and respond to antibiotics, yet, neither one ever had positive results for high strep titers! My older sons ASO was borderline, (still normal), but, both had low AntiDNAase B titers. (my older son showed high levels for Epstein Barr virus) I did not get the tests run until 3, 3 1/2 months after strep and I missed the boat. Kids titer levels come back to normal at drastically different time levels, some stay elevated for years! In our case, they were normal 3 months later. It is important to get the tests run when symptoms are at their worst after strep. Also, other illness can set this reaction off, so, don't get stuck on the strep, titer issue for a definite diagnosis of PANDAS. If antibiotics help, you are more than likely dealing with an autoimmune process resulting from illness that results in tics. Both my sons are on prophylactic antibiotics and doing well. They have a viral now and are barely showing any symptoms. Before antibiotics, they showed many. Kelly

PA

occupational therapy

Hi, Xylitol is a natural sugar and is very helpful in controling bacterial growth. It has shown effective in helping reduce/prevent the incidence of ear infections, etc. I was buying Xylitol gum (Trident ) for my kids and encouraging them to chew it, only to realize it seemed to increase certain behaviors, reactions in my younger son. Now, I then realized this gum had aspartame and artificial colors/flavors in it, as well as spearmint, which is high in salicylates. (which my younger son is sensitive too, I believe) So, I really don't blame the Xylitol for this reaction, I have heard only good things about it. I didn't notice anything with my older son when he chewed it, but I put the "kabash" on the gum anyway for him too just because of the artificial junk in it and I didn't want to take any chances. If I can find a gum that has Xylitol in it without the other stuff, I would not hesitate to give it to my kids. I do know there are natural Xylitol products out there, I just need to go find them. Kelly

Hi Everyone, I know this has been discussed numerous times, but, there have been several mentions of different Dr.'s and tests to have run for allergies, sensitivities, intolerances, etc., that I am not sure what to do. I want to have my kids checked for Candida, gluten intolerance, casein, food allergies/sensitivities,etc. Now, if possible, of course, I'd like to go somewhere where this could be covered by insurance. Is that possible? Do traditional Dr.'s/allergists run these tests? If not, what kind of Dr. do I need to see to have these done? What tests do I ask for to have these all covered? Thanks so Much!!!! Kelly

Hi Everyone! Just a note about vaccines. I live in PA, and all I had to do to bypass the shots was to get a note from our pediatrition stating we did not wish to immunize anymore due to health concerns. That was it in a nutshell and the school accepted it with no problem. Now, I don't know about the other states, but, it was simple here. And these were also "mandatory, PA State law "required" shots," that we easily bypassed. If you feel in your gut that you should not immunize, then, don't do it... no one can make you!!! C.P. I got tears in my eyes when reading your statement about "wishing you were dead," and then someone else's about "wishing the world would end." When this hit us out of the blue this past summer, it was so sudden and severe, I had those feelings numerous times. I have been through some pretty rough things in my life (I know, who hasn't), and I always managed to keep my head and spirits up pretty decently through them all and considered myself pretty strong. This particular trial with the kids had me flat on my back. I had NEVER been so low, down, scared, confused, heartbroken, and had feelings of hopelessness. I have great faith in God and I felt like my feelings were letting him down, but, I tried so hard to be strong, but, just couldn't control my feelings. I know he understands, afterall, he's been there. But, being someone who had never, and would cringe at the thoughts of people wishing they were dead, well, there were several days I thought it would be so much easier if it all would just end, if I would just end. It was soo hard. Now, rest assured, I would NEVER do anything like that, but, I was shocked to have those thought cross my mind.. I also had thoughts of running away, but, again, would NEVER do it. I just pray, and pray, and manage to get by every day, and will continue to do so no matter what. "What doesn't kill us makes us stronger," well, I'll be one tough chick when I get to the end of this tunnel, with a much greater appreciation for all the important things in life, and not sweating the small stuff! Kelly

I'd say yes...if her symptoms lessen or dissappear, I'd consider looking more into PANDAS/PITANDS. Also, it is extremely common for kids with PANDAS to show non of the usual symptoms of strep. Good thing you had it checked!!!

Kim, Thanks for the great articles! The one about the vaccines makes my skin crawl. I counted my kids vaccines and they have both received about 23 each so far, (ages 5 and 8) and are scheduled for MORE!! Which they will no longer receive any immunizations! If I could only turn back time........ Anyway, my 5 year old is due for his kindergarten shots, 5 total I think! I called the school and told them I do not, well, will not immunize my child and they said, " no problem, just get your doctor to sign a note and bring it with you when you register." Well, then I thought, okay, so far so good, but, will my doctor do it? I called the doctor, spoke to a nurse, and she said it was no problem, come pick up the form tomorrow! WHEW!!! It was so easy. I just want all the parents to know you do not have to immunize your children regardless of what doctors, or anyone for that matter say. The "law" says it requires them, but, I think they say it is a "law" because they want these kids to have them, and then parents just assume it is mandatory and go ahead with it without knowing there are options! (like I did ) I am NOT saying you should not have your child immunized, it is a personal choice, I just wanted you all to know that you indeed have a choice!! Kelly