thereishope

Sorry it sounds like you're having a rough time with it. Did you have the coughing and sneezing prior to starting the abs? Can yeast get that out of control after only 1 or 2 doses? Could any of it be mind over matter due to nervousness over starting medications?I'm not saying you're imagining things, but that happens to me sometimes.

It was a book about strep. Sorry, not exactly what you were looking for. http://www.latitudes.org/forums/index.php?...ic=6743&hl=

Don't worry. In a month or so you'll be rattling off info to the new 'newbies". My son's first exacerbation was in Sept 08. I've been reading this forum almost every day since I joined in April 09. So, it's been a while. Actually, Dr T did mention a book recently he suggested. I don't think it was directly about PANDAS, but he did suggest one. I'll find the link.

Dr T has been added to the list of speakers! Here is a link to the revised list... http://www.autismone.org/content/conference-speakers Dates for each speaker is now listed.

I have not come across any books about PANDAS except for a brief mentioning in some OCD books. There is another book on the market in which many believe , in hindsight, the boy had PANDAS. It's not a medical book, though. It's titled "Against Medical Advice" by James Patterson. I have not read it since I still have a hard time reading books about kids suffering like my son. Too soon for flooding of memories. Anyway, it won't offer med info for PANDAS but I have heard it is a good book.

What allergy meds is she taking? Like I've said before, allergies is a trigger for my son. Also, dust mites in particular are very bad rightnow. So couple that with being severely allergic......well...I feel bad for her

If the tics are lessening on the antibiotic, that's a good sign of PANDAS! And, yes, some have said that while their child is sick, symptoms actually lessen at first. The calm before the storm. Like when their child has a fever, the child appears fine. Then....BAM!

It would be amazing to get everyone in one room for a conference. Hopefully, a PANDAS parent rep would be present too. This would be a good way to try to get PANDAS into local media as well. I personally do not have funds or know of a company at the moment, but I will think on this a bit more. I guess if it comes to it, it wouldn't hurt to possibly to blind mailing/calling looking for sponsorship. It's also a tool just to get get PANDAS info to the general public.

I think alpha & gamma haemolytic streptococcus is group B strep. Maybe someone else will chime in about this? Group A is what is normally associated with PANDAS. However, many wonder whether Group B can cause exacerbations as well and there have been threads devoted to this. You can search for those on the bottom left. I mean if so many other things (viruses, allergies, vaccines) can cause an excaerbation, why should one believe group B strep cannot? I completely forgot to mention that there are other PANDAS kids with unexplained fevers. In regards to outgrowing it, I have heard the same about OCD too. But if you at all think it may be PANDAS, you owe it to your child to just not "wait it out". Afterall, if it is PANDAS, it could worsen and then you will have to deal with the "what ifs" and guilt. Can your child take Ibuprofen? Some have found it eases some of the PANDAS symptoms. It's just a temp bandaid and does not replace trying to get to the root of the problem, but it is somethng to try. Now, not all PANDAS kids will see improvemnt with Ibuprofen, but if you do see some it is an indicator that something is going on. The Ibuprofen may take down enough swelling off teh basal ganglia that the child's PANDAS symptoms ease up. And, Lynn, thanks for the compliment. There are so many others on here who know so much more than I do, but I really appreciate what you said.

I actually started a similar thread about vaccines a bit back. I was curious if vaccines caused exacerbations. If you'd like to view that poll/thread... http://www.latitudes.org/forums/index.php?...ic=6155&hl= For my son, he did not receive a vaccine anytime prior to his sudden onset. At one year old, he recieved the chicken pox vaccine and ended up getting the chicken pox rash. I've started a thread about the chicken pox vaccine before as well. if you're interested in reading that one, I'll post it.

I actually started a similar poll about vaccines a bit back. I was curious if vaccines caused excaerbations. If you'd like to view that poll/thread... http://www.latitudes.org/forums/index.php?...ic=6155&hl=

Welcome. It's important to remember that what works for one child, may not work for another. The first step is trying antibiotics to clear the infection. Once the infection is cleared , healing can begin. But antibiotics isn't as easy as it sounds. One has to find the right antibiotic for your child. It seems most on this board have had most success with Zithromax and higher dose Augmentin. I have also heard a handful with Keflex. Some kids may clear on amoxicillan and penicillan, but that's seems to be on oddity/rarity. Here is one article that explains how pen and amox may not clear strep http://www.entrepreneur.com/tradejournals/.../169459644.html Finding the right antibiotic for your child, unfortunately, is a lot of trial and eror. There is also a research study going on that is the closest thig there is to a diagnostic test. It is being done a Dr Cuningham. You send for a kit, have blood drawn, send it back. The results will tell you if your child falls into a PANDAS range. However, one has to remember that it is still in reasearch phase and it currently costs $400 since funding was lost. Something else is that strep for many children is the original trigger, but they then have oterh triggers like viruses, allergies, etc. Also strep can hide in the sinuses, gut, anal strep, and for girls, vaginal strep. So what symptoms that seen to "just be there" w/o going away could actually be caused by hidden strep that the antibiotic did not erradicate. Alos, get all family members tested for strep. Some kids will have PANDAS symptoms surface from exposure only. One does not need to have a fever or sore throat to have strep. Personally, your family history alone would send up red flags for me.

Really? I know another mom in that doesn't post on this forum who has Ehlers Danlos Syndrome. Not sure if her teen PANDAS son has it too. If you'd like her info, let me know.

Lyme mom, What antibiotic do children receive w/ Lyme Disease? Is ther specific ones to stay away from? I know it probably has been mentioned in the other threads related to Lyme, but I will post the question here as well.

Can your child take Benadryl? I would say try that and see if that helps. Alos, at a separate time, you can try Ibuprofen and see if he stop with using that. The Benadryl might help if it's an allergic reaction. The Ibuprofen might help if it's a PANDAS symptom. Try the on diffent days so you can tell the results of each one independently. Also, with this weather, sry skin is very bad in our house. My hands are in pain and itchy. Search out the scratches and put Aquaphor on the areas and see if that helps at all or a topical antibiotic. What antibiotic is he on? Have you changed detergent, soap, fabric softener, or recently been bleaching towels or anything?

Some people may say to give it a whole month, but if you just see things worsening, personally, I wouldn't wait to switch.

It is often said on here that if your rapid comes back negative, to get a culture. Often offices will say that they only call the parents if the culture is positive. If it is negative, you won't get a call. Well, I'm just not that trusting and I always request they call for a negative as well (sometimes they do). Today would have been the end of the 48 hour culture on my non-PANDAS son. Strep hit his classroom and he's non-symptomatic. I never got a call, so I got on the phone and asked for the results. well, some dropped the ball and they never ran the culture! My son was put on meds anyway, but I needed to know for sure if he was clear of strep since that would affect if I brought my daughter in for a test or if he needed a follow up after finishing meds (meds for different reason). So, this is my simple reminder that if you don't get a call, follow up with your office for the results.

Tamar Chansky's "Freeing your Child from OCD" is what helped us a lot. Is that the book you meant or is the anxiety another one?

Well, let me start by saying some kids need IVIG or PEX. Some kids may not have found the right antibiotic yet. If you are not seeing any improvement after a decent amount of time on abx, that may be the case. With my son, I saw all the other PANDAS symptoms that had surfaced go away, but a decent portion of the OCD stayed. The OCD wasn't as bad as it was during the exacerbation, but it was still definitely there and affecting life.It was our third step triggered excaerbation so I had the recovery of the others to compare it to and that's also how I got a sense of what was PANDAS for him and what was not. For some, including my son, CBT, ERP or any other type of intervention like that don't work during an exacerbation. Or maybe it slightly works but not enough to make a real difference. Even when it was residual, my son would not cooperate with CBT.

Some kids who have PANDAS actually had rages and such while on the steroids. So, there are some PANDAS kids that do not see improvemnt on the steroid. There is one that posts on here that did see improvement with IVIG even though the steroid experience was horrible. You may need the Azith more than twice a week. Those who give that prophylacticly can chime in about their dosing. I believe they give it daily. Have you also tested all family members to make sure no one else had strep?

Could the cold be indoor allergies? Some have posted that allergies are getting to their kids right now. Dust mites I guess are bad this year. Allergies can definitely cause a fare up in PANDAS symptoms.

There's a chance the first time was strep, that started the process, then the RSV sent it overboard into a full fledge exacerbation. I'm starting to hear more parents with similar experiences, with vaccines too.

reactive, perhaps you menitoned this already, but where in Ohio? I'm in Cincinnati (Anderson Township). My son has an IEP so that's what I am more familiar with. If it's accomodation or having his medical situation on file, then a 504 may be more what you want. If you want services an IEP provides that. My son recieves speech therapy through the school district, that is why he has an IEP. Now if I wanted to add PANDAS, OCD, etc, since I have a pre-existing IEP they'd probably just tack it onto that to make it easier. Like I said, I have PANDAS in his med history section along with an explanation. I also had a long conversation with his teacher about what has happened and what to look out for. I notified his slp and my other son's teacher too. The office has it on file to call if strep hits either grade. As for an advocate, yes, you can have one accompany you through the process. I haven't needed one since they haven't given me a hard time. My district also has a "support system" for parents whose kids have an IEP, 504, or any concerns about their child. You can look into yours has something similar. They can help with the process too. The rule is ask for loads of stuff so you have a bargaining tool to lower what you werre asking for if they fight you. Example, they wanted to give my son 30 min of speech a week. I asked for an hour. We settled on 45 min. People don't know they can request more than what they are offered.

I'm so happy for you! You fought hard for him and it's paying off. Good job!

I'm sorry you're going through this. Are you sure it's just a cold? What are her symptoms? What antibiotic is she on?