thereishope

Welcome. You say he has chronic strep. To your knowledge does he have strep now? Have you discussed possible PANDAS with your ped or DAN! (if you have one)? If you have a DAN! doctor, they are usually familiar with PANDAS and it will give you somewhere to start while you call and make an appt with maybe one of the TX doctors listed. There's no reason you can't try to have more than one doctor on board. I wonder if he doesn't like to swallow because he hesitates and thinks about t. If you do that then swallow, it almost feels like you might choke or you can't breath. When you eat, it's just part of the process. I don't know if that's a possiblre reason. Just thinking out loud.

I am so sorry. I always believe the first step for my son when those awful things comes back is to take him for a strep test. Tomorrow,, take him to urgent care or the er and have a strep test done since it's a Sunday. Every day makes a difference. If the rapid comes back negative, ask that they put him on abx until the culture comes back. Try to get something stronger than amoxicillan. At least Augmentin or even Zithromax. Is he on any antibiotics right now? are you in good standing with dcotor that will trust what you say and increase abx or put him on one? You can try giving him Ibuprofen. Many have found that Ibuprofen eases some of the PANDAS symptoms. It's just temp like a bandaid, but as you know, any relief would be great. Let us know how the test comes back and take it from there. There are experts to recommend that weren't much talked about a year ago and tests you can do. Take a deep breath. It's scary to see it all come back, but you're not alone. Please let us know how everything goes.

If you have a Meijer store by you, I saw they have those tooth brush sanitizers for $30. They come in pink and blue. It does specifically state that the light will kill strep.

Something to consider for those who had exacerbations following a vaccine. http://www.nvic.org/reportreaction.aspx Report Vaccine Reactions. It's the Law The National Vaccine Information Center (NVIC) is a non-profit, educational organization founded in 1982 by parents of vaccine-injured children and located in Vienna, Virginia. Our goal is to prevent vaccine injuries and deaths through public education and to protect the informed consent rights of all Americans. We are not a federal or state government agency. As a consumer vaccine safety advocacy organization, we worked on the National Childhood Vaccine Injury Act of 1986 and were responsible for urging the creation of safety provisions in that historic law. This included a centralized vaccine reaction reporting system, called the Vaccine Adverse Events Reporting System (VAERS) that is jointly operated by the federal Food and Drug Administration and Centers for Disease Control. Although it has been the law since 1986 for doctors and other vaccine providers to report hospitalizations, injuries, deaths and serious health problems following vaccination to VAERS, it is estimated that less than 10 percent, perhaps less than one percent of all vaccine-related health problems are ever reported to VAERS. It is very important that ALL serious health problems, which develop after vaccination, be reported to the federal health authorities at VAERS. As a society we need to know how many people who get vaccinated are getting sick after vaccination and how many go on to die or are permanently injured. In addition, information provided to VAERS may also help identify common factors, which affect certain individuals who have adverse responses to vaccination. More information can lead to safer vaccines, safer vaccine policies and medical research to develop screening techniques to help reduce vaccine reactions. You should make a vaccine adverse event report to VAERS if you or your child has regressed physically, mentally or emotionally after vaccination or has experienced acute symptoms within hours, days or weeks of vaccination. Some of these symptoms include: Pronounced swelling, redness, heat or hardness at the site of the injection; Body rash or hives; Shock/collapse; High pitched screaming or persistent crying for hours; Extreme sleepiness or long periods of unresponsiveness; High fever (over 103 F) Twitching or jerking of the body, arm, leg or head; Crossing of eyes; Weakness or paralysis of any part of the body; Loss of eye contact or awareness or social withdrawal; Loss of ability to roll over, sit up or stand up; Vision or hearing loss; Restlessness, hyperactivity or inability to concentrate; Sleep disturbances that change wake/sleep pattern; Head banging or onset of repetitive movements (flapping, rubbing, rocking, spinning); Joint pain; Muscle weakness; Disabling fatigue; Loss of memory; Onset of chronic ear or respiratory infections; Violent or persistent diarrhea or chronic constipation; Breathing problems (asthma); Excessive bleeding (thrombocytopenia) or anemia. There are other symptoms, which may indicate that you or your child has suffered a vaccine reaction. Not all symptoms that occur following vaccination are caused by a vaccine, but it cannot be automatically concluded that symptoms which do occur are NOT related to the vaccine. Therefore, it is important for your doctor to report ANY serious symptoms or dramatic change in physical, mental or emotional behavior that does occur following vaccination so federal health authorities have the information for analysis. Since its’ founding in 1982, the National Vaccine Information Center has operated a Vaccine Reaction Registry which has served as a watchdog on the VAERS system. We encourage you to also register you or your child’s suspected vaccine reaction in NVIC’s Vaccine Reaction Registry. If your doctor will not report a serious health problem you or your child suffers following vaccination, you have the right to report.a suspected vaccine reaction to the federal government. Thank you for taking the time to report to both the federal VAERS system as well as NVIC’s Vaccine Reaction Registry. Reporting vaccine reactions is the law but it is also a way to generate information that will help reduce vaccine risks for everyone. Other Information: There is a wealth of information on this website and also through our links. We hope you will become a member of the National Vaccine Information Center and also get involved. by checking out our Resources. If you would like to get involved in the vaccine safety movement in Texas, please contact Parents Requesting Open Vaccine Information. For contact information in other states click on Some others states with advocacy sites are located in NVIC's Resources — see State Vaccine Choice Advocacy If you would like to investigate the Vaccine Injury Compensation Program, please click here.

Yes, it makes sense. And I told you not to worry about the joke:) That's what I think is important for people to remember. It's an autoimmune issue. You don't catch PANDAS. Although I'm still stuck on the clusters of kids with PANDAS. For them, is it soley the strain that causes the whole autommune disorder to start? I still think it's not cut and dry.

My son boycotted milk during his exacerbation and for a while after. I just saw it as his body telling him something and I never pushed it.

I'm sorry you got bad news again.Has your daughter been showing any signs of PANDAS or are you catching it really fast?

I think the majority on here know that other things can cause this disorder to surface. Strep was definitely the trigger for my son's original exacerbation. The only other thing I can think of that would have been a red flag that something was wrong with his immune system was his recation to the chicken pox vaccine at one year old. It also may not be an illness that causes this disorder, but other factors. It is the illness that is the finally part to the equation. Meaning, could kids have PANDAS as part of them but not ever have it activated? Does that makes sense? I really think each child is different. What started the PANDAS process in one may vary from another. Take cancer as an example. Some are gentically prone to it some get it due to the enviormental factors. It may not be a clear cut cause and effect.

My son did get strep after t and a. However, is should add all 3 of my kids had strep that time so odds were against him. Now "knock on wood, please don't let me jinx myself"....he has not had strep again sicne then. his last strep infection was March 2009. I can only give my personal opinion. My son may get strep again. I know that and I will never feel like we are out of the woods. But I also don't know how many time the t and a has kept him from getting strep. I have large tonsils, they never took them out. I wish they did. Now I can share with what I wish I did with his surgery.... Now, if you decide to have surgery, please wait until she's recovered for a good amount of time. That way, in the event, she does have an exacerbation, her body will be fully recovered from the last one and you're not adding more problems to ones that were still there. Also, so your family has a break. I would recomend having it done during the summer when strep isn't rampant and she has ample time to heal if any problem should occur, w/o interfering with school. Make sure she gets abx before surgery and post surgery. Try to get a month post surgery. Not the 3-5 days they often give. Some have even gotten abx via iv during surgery in case the child is exposed during surgery. One mom posted she had an rx for a streoid on hand post surgery in the event any issues started to arrrise. With our kids you have to always have the idea "hope for the best, but be prepared for the worst". Don't expect the worst every time, but be prepared for it.

Do watch how much apple sauce and apple juice you give. That can change their bowel movements.

It is hard to sometimes remember those harsh words that come out of their mouths is PANDAS talking, not our "real" kids. He had the abx today 30 mins after a good hot lunch. Tonight's will be after some ice cream, just to make sure. Yeah, it was a little tough to hear out of him today, "You're not doing anything to help me!!" ugh. I do know, though, that he is sick. There's never been a question in my mind about that. No typical teen behavior can hold a candle to a PANDAS episode!

Is he on a steroid? It may be an oral fixation. Will he chew a sugar free gum instead? But don't get gum with splenda or aspartame as a sugar substitute. Also, if he wants to eat a lot right now, it may be time to do an overhaul on the fridge and cabinets. All the high fructose corn syrup (hfcs), food dyes, etc will make him hyper. If you eat enough of it, you almost get addicted to it. Don't replace soda, with diet, but they do have all natural carbonated drinks for kids so he can still get that fizz. If you want to keep soda on hand as an occassional treat, right now they are producing "throwback" soda w/ sugar instead of hfcs. But limit what is in the fridge, and store the remainder in a backroom. Don't tell him where the rest is. He'll sneak them.

If it means anything, I think all our kids have Dr Jeckyl and Mr Hyde syndrome. My son did the same. One minute he wanted to die , even used those words. he'd say how he hated me and would hit,kick, etc. Then ...bam....all lovely hugging, etc. One time I even asked if it was him. I was thinking split personality. As for anxiety, my son's would reach a limit two different ways. One was when he was in the middle of an excaerbation and he had the big contamination fear. If he thought he saw you possibly touch your face, he'd go over the top freaking out. Then he had during recovery, extinction bursts of anxiety when we would try to get him to overcome an OCD habit/ritual and that building anxiety can be very overwhelming. Unfortunately, sometimes you do have to ride them out. When a child or teen is in an exacerbation, reason is gone. You can't explain to them why what they are doing doesn't make sense. You can't threaten them with ultimatums. If you think it's stomach issues, be careful with the Ibuprofen. Make sure that is taken with something like milk so it coats the stomach. I give my son Ibuprofen with his antibiotics as well.

That's a hard one. I was going to ask about the timing of meds before I read the other post. All I can think of asking in order to rule out anything else is what time does he eat lunch and what does he do after the meltdowns occur? The body is really good at telling time w/o a clock. It does sounds like there can be hidden trigger in there somewhere. And, yes, separation anxiety and contamination fears can lead to complete meltdowns and horrible anxiety.

Someone awhile ago posted that you should space out giving a probiotic and the antibiotic. Does anyone know what the timing should be?

I put "other" and it didn't ask me to elaborate. I received my email confirmation for attendence with password.

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My ENT said for his set of doctors it is standard protocal to take adenoids when taking tonsils to avoid a possible second surgery. Yes, there still isn't enough info to back taking tonsils out to try to prevent future step and from what I last heard, it is not standard protocal following a PANDAS dx. However, with the ENT I saw, for them they consider it their own rule. Granted, a parent can deny surgery if they are told this and they don't want surgery. I know there are PANDAS kids out there who still get chronic strep post t and a and my son got strep a month after surgery. So, it becomes a personal decision. For me, I have large tonsils and I wish I had them out as a child. I also thought for my son it was the right decision esp since I live in an area where they do not believe in proph abx. I saw it as his chance to try to prevent numerous future strep infections. I'll never know if it is preventing strep or how many times it will prevent it, if any. There are things I would do different regarding surgery. I would get it done at the very end of the school year or very beginning of summer. That way surgery is done at the off seasonof strep and if an exacerbation should occur, it would happen while he was not in school. I would have asked for more abx post surgery and a different antibiotic than what was given. One mom said she had a script for a steroid burst at her disposal if an exacerbation should have occurred post surgery. Also, my 2 non PANDAS kids still have their tonsils. Even my oldest, who the ENT saw years prior and said he had large tonsils, did not say he was a candidate for surgery, even though his tonsils are huge.

double post

It's scary to think of a 2 yr old going through surgery. They do say the younger the child, the easier the recovery w/ t and a. My 5 year old's recovery was actually easy. Did they talk at all about anesthesia and the possible effects on a 2 yr old with an elective surgery, or do they not really see it as elective, but something that needs to be done? My son had his t and a surgery at a children's hopsital and they even let him sit on my lap as they put him under. It wasn't as traumatic as I thought it would be.

She will be speaking at the Autism One Conference in May.

Is the "877" number toll free?

Glad the appointment went well and I'm glad you educated many more. Do you have a date set?

You're not suggesting we fill up all the spots even if we can't attend, are you I just registered. Oh, shoot, I just realized I'm not available at that time. Ooops.

You just put the biggest smile on my face! Thank you so much for having such courage!