thereishope

Did they culture those rapid tests? Was his pneumonia strep related? Some forms are caused by strep. As for your daughter, have they ruled out scarlet fever? You can look up pics of a scarlet fever rash online and compare hers. I would call the office and tell them the rash is still bad and you need a different prescription. A lot of times, you can do this through a phone nurse. If they have seen the child once, they will change the script ove rthe phone if the parent explains why they think it is not working. Did you take your son back in for another strep test when you found out strep was in the hosue yesterday? If not,do that and also get anyone else in the family a strep test. As you've probably read, some kids will react to exposure to strep. Even get your husband who never had strep, a rapid and culture. One does not need to have symptoms to actually have strep. Also, adults' rapid can come back false negative, so do insist on a culture as well. My hubby's rapid came back neg, insisted on a culture and that came back +. Good places for PANDAS info is www.pandasnetwork.org PANDAS fact sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 It may also be beneficial to read a thread devoted to examples of OCD. Some kids have OCD tendencies and the parents don't realize that they are exhiiting it. http://www.latitudes.org/forums/index.php?...ic=6153&hl= Finally, you can try giving him Ibuprofen (Advil, Motrin) and see if that helps with his PANDAS symptoms. For some, it works as a band aid for their symptoms. It doesn't solve the problem, but it may help. If it does help him, it would be good for school too.

You're not the only one who has seen problems arrise after t and a surgery. So, is that a prophylactic dose? Have taken him for a strep test? My son had a + strep test about a month after his t and a surgery. If you haven't taken him in for a strep test yet, do it.

I'll address the steroid question... My son went on a 5 day steroid burst during one of his exacerbations. He did not fully get back to himself while on the steroid. What I say is he finally plateaued, stopped spirraling down, and gave a jump start in recovery. So, the steroid did help us. However, many children in this forum have different stories with steroids. The results are not "one size fits all". Some went back to 100% themself, some saw improvemnt after being on it for awhile, some backslid after going off of them, some did not, some did not really see benefits and actually had a bad reaction to them. The experiences really is all over the place. So, how is he doing right now? What are his symptoms? I do know a PANDAS child who was put on Prozac and it probably coincided with improvement from abx. So, all thought it was the Prozac helping. However, then other odd behaviors surfaced and the parents realized it was the Prozac causing the new problems. Like you, the parent went against the docs recommendations and pulled the child off of Prozac. the child stabilized soon after. Now I am not saying this would be the case with your child as well. I know other people whose PANDAS children remain on Prozac and do not believe it is doing any harm to their child. It's a hard call to make and hard to weed through what is helping and what is hindering. It's also a hard decision to make since if take your child off the Prozac, realize it actually was helping them, then you have to wait for it to get in their sytsem all over again. My son never did SSRI's so Idon't have personal experience with them.

My son did not like having his head touched or hair brushed. That's when I considered myself lucky that's he's a boy w/ a crew cut! His hair did get pretty bad, though, when I wasn't able to cut it for months.

Who else read Buster's post and tried to pronounce "antilysogangliosides" out loud and couldn't?

I mean this as lovingly as a mom can...but when he starts to act like an insane person, to date, it has been strep triggered w/ a positive strep test with one exception. Early on in the recovery of his third exacerbation, he was back to having out of this world anxiety surrounding OCD tasks with meltdowns in public. I took him for a strep test and it was negative. I realized about a week or so later that allergies triggered that one. I think that one was so bad w/o strep being present because he was still recovering from a strep triggered exacerbation. It was only a couple weeks post strep. Once I got his allergies under control, the behavior went back to where they were in the recovery process. When he has a slight exacerbation caused by a virus, it seems like it's usually a higher sense of emotion with a lot of easily triggered crying, maybe very slight OCD, and overall, I can just tell it's crept back in. It is not the insane child I get with strep. he will be functioning and no one else would probably realize something is awry. I've learned with those, to ride them out and they go away when the virus is gone. I just keep my eyes peeled for his usual strep induced behvaior. The second that comes along, I will run to the doc for a strep test. I don't know how he reacts to exposure only. When he gets strep, I take the whole family in. The only time his sibs have tested + for strep, he had it as well. As for viruses, when his sibs have a virus, he is usually getting over it or comes down with soon after them. So it's been hard for me to find out how he reacts to exposure w/o any illness on his own part. Is your child on abs when they get tested? When you say yours test negative, is that through a rapid,culture, and/or titer test? Finally, what abs has she been on and for what amount of time?

An exacerbation to me means that my son has a bunch problems and disorders surface as a result of PANDAS. Then I also say my son has setbacks. What I mean by that is he was in the mist of recovery and things start to backslide. I consider the exacerbation over when those problems are gone and my son is back and stable. For me, the sign that an excerbation is here is when he has horrible meltdowns over irrational things and OCD. That means he needs a strep test.That's how it starts and over the course of a day or two many more problems and issues arrise. I used to refer to exacerbations as episodes befroe I went on this forum. I also try to distinguish my son's exacerbations as strep triggered and viral triggered. They vary in severity and symptoms. Strep triggered are in a total separate catagory.

I am so sorry. How old is he again? My sister was admitted to the psych ward when she was in the 8th grade. She was angry about it at times, but also it was a good place for her at the time. Have you talked to anyone at UHC about the admittance? My mental health benfits with them aren't good. Also, watch out what forms they send you in the future. They wanted me to sign something that would have given them access to all of his psych med records and allowed them to talk to his therapist about his sessions. If that happens, your out of control about what is in his med records and on file with insurance. They will not decline benefits if you do not fill it out and sign it.

Have you noticed...I do not often reply and give any opinion to article threads:) Maybe my brain got dusty staying at home with the kids all these years. Okay, gotta go. My 3 year old wants pineapple and Caillou is almost over.

It also becomes harder when you sadly forget what your child was like pre-PANDAS and you have to get to know them all over again...their natural quirks and all.

That's true with the religious exemption. However, there are a few states where even a religious exemption is not available. I was so happy to learn I can take a philosophical exemption in my state! I have not had a ped's appt with a "required" vaccine yet. My 8 year old's bday is in Feb. I think they'll try to sell me a second chicken pox. No way. Are these people going to be expected to get a chicken pox vaccine shot every 7-8 years for the rest of their life?

I had to laugh at your response. That's exactly what I thought when I read it. I'll tell him to use a condom or teach him to keep it in his own pants!

I should add that with my son, I did get the sudden onset/strep connection rather quickly. With the first exacerbation, his behaviors were off for 2 weeks then we found he had strep. The 4-6 weeks of recovery began after we started meds and I think the fact that we caught the strep rather quickly helped a lot. With his second exacerbation, he received a steroid within 3 days of contracting strep again in addition to the antibiotic. That recovery I think was about 6-8 weeks. With his third strep triggered exacerbation, it took about 5 months. But, like I said, he had other triggers occur during recovery which set him back and I realized he had residual OCD that had to be dealt with with ERP.

I quickly looked into it and Merck really tried to make it mandatory, but I don't think they succeeded. http://www.24-7-news.com/archives/4021 "...In Texas, Gov. Rick Perry had tried to order a Gardasil mandate in 2007, but was over- ruled by the state legislature. That same year, New Mexico Gov. Bill Richardson vetoed a mandate passed by that state’s legislature. According to the Associated Press, only Virginia and Washington, D.C. have instituted loose Gardasil requirements for sixth grade girls. Those requirements go into effect this school year. In Washington, sixth-grade girls will not be allowed to attend school unless they have had Gardasil, or their parents provide the school with a form indicating they have opted out. In Virginia, parents are asked to provide documentation if their daughter had Gardasil, but there is no penalty for not doing so..."

Actually someone posted on here awhile back that a strep vaccine is in the works. But no PANDAS wouldn't want that since it would cause the body to produce antibodies, and possibly the wrong ones that causes PANDAS. I think the strep is probably more than just on the skin, because she has the tummy aches/joint pains, we'll see what the bloodwork shows. About the vaccine, are you taking about the hepatitis one they want to give newborns? It was already on the schedule when my last dd was born and I declined it. PANDAS or not I think it's nuts to give a day-old baby a vaccine, and I'm particularly cautious with the newer vaccines, since they have been not been used long enough to really now for sure if they are safe. I do vaccinate my kids, I just don't follow the schedule and I don't do multiple shots in one day. Now, if they had a strep vaccine, that would be something to consider!

It does use the words recommendation and suggest. However, isn't Gardisil mandatory in some states already for girls? And isn't the death rate and injury rate associated with it is considered high? The thing is when parents take their kids to the ped, the ped often presents it as a must, not a suggestion. So, " John is set for his flu shot today". Not, do you want to give John a flu shot. It is not required, but we recommend it. As for combining shots, it's probably an insurance induced suggestion. They only have to pay for the one visit.

Not happy about his... New childhood vaccines schedules released http://www.palmbeachpost.com/health/new-ch...sed-161283.html Boys should get the human papillomavirus (HPV) vaccine to protect them against genital warts, and all children should receive the H1N1 vaccine to guard against swine flu, according to updated guidelines on childhood and teen vaccines. The new vaccine schedules -- issued by the American Academy of Pediatrics, the U.S. Centers for Disease Control and Prevention and the American Academy of Family Physicians -- also recommend using combination vaccines whenever possible. "These are life-threatening illness that vaccines prevent, and if you have a combination vaccine that's safe and effective and requires one less stick for your child and one less trip to the doctor, it makes sense to me -- as a father -- to think about that," said Dr. David W. Kimberlin, a professor of pediatrics and co-director of the division of pediatric infectious diseases at the University of Alabama at Birmingham. Kimberlin is a member of the committee that created the new immunization schedules. The new vaccine schedules are published in the January issue of Pediatrics and online on Jan. 4. The most significant changes are: A recommendation that children older than 6 months receive the H1N1 influenza vaccine. A newly licensed HPV vaccine for girls, known as HPV2, to protect them from cervical cancer, which can be caused by certain strains of HPV. Girls should get their first dose of either the HPV2 or the earlier HPV4 vaccine, which is still considered effective, around age 11 or 12. A suggestion that a three-dose series of the HPV4 vaccine can be given to boys between 9 and 18 years old to prevent genital warts. A statement that the use of combination vaccines are generally preferred over separate injections. The need to revaccinate some high-risk children who have already received the meningococcal conjugate vaccine (MCV4). Kids at high risk tend to be those with immune system disorders. Booster shots aren't recommended for those whose only risk factor is living in a dormitory setting, according to the new vaccine schedules. Overall, Kimberlin said he thinks most parents are following these recommended schedules and protecting their children against what can be life-threatening illnesses. However, "parents are inundated with misinformation or incomplete information about vaccinations," he noted. "And, with all the noise out there, people start thinking there might be something to what they're hearing." Dr. Michael Green, an infectious disease specialist at Children's Hospital of Pittsburgh, said that although most children are vaccinated, "there is a fairly large cohort of kids who don't receive optimal immunizations either for religious reasons, or their parents don't believe in immunizations because of health concerns, such as a fear of autism." But the data has consistently shown that the measles vaccine doesn't cause autism, he said. Measles, on the other hand, can cause brain damage, or even kill children, explained Green. And, while some parents may think that they don't have to worry about these diseases because most U.S. children are vaccinated, an outbreak for unvaccinated children might be only a plane ride away. Last spring, said Green, someone visiting from another country brought measles with them. They were in close proximity to an unvaccinated American family who then contracted the measles. The outbreak ended quickly and without any serious consequences, but others might be more severe, he warned. "People forget that when there used to be measles that kids died, or they ended up with brain damage. The risk-to-benefit ratios with today's vaccines are tremendously slanted to the benefit side. And, yet between every one to three months, I see a child with a vaccine-preventable illness," said Green. "The vaccines we have today are the safest vaccines we've ever had, and I hope that parents recognize that it is a matter of life and death, and that they choose to do everything they can to protect their children," said Kimberlin. "Time and time again, when immunization rates fall, diseases come back, and then the immunization rates go up again." More information Learn more about childhood vaccines from the Nemours Foundation's KidsHealth Web site. Copyright © 2010 ScoutNews, LLC. All rights reserved.

My son first two excaerbation also lasted somewhere between 4-6 weeks. The third one took longer because of allergies surfacing during recovey and residual OCD we had to tackle. I would add the Ibuprofen. You can give it every 6 hours for a week or so then taper down to once daily. I say if that helps, give it. If his main symptoms are OCD, give him Omega 3's too. That helps with OCD. Also, the basics, like sleep is very important.

I think the monthly pen injection used to be the norm for RF. I've also heard that they are painful and burn. When I inquired about it, the nurse said it really takes a toll on the tummy too. But, then, I don't really trust what that office says anymore.

Augmentin is amoxicillan with an added ingredient. That added ingredient makes it stronger. The magic antibiotic for each child seems to vary. It seems like the majority of kids in this forum, have had the most sucess on Zithromax, Azith, high dose Augmentin, and some on Keflex. I think for some the region they live in also dictates what antibiotic works best for them. Some kids do improve on good ole amoxicillan and penicillan. But if you do not see improvement or you see major backsliding, your child probably needs a different med. I think we need another poll! What med has worked for you.

If there is strep on the skin, I don't think the titers would rise. In light of the new revelation of PANDAS, have you thought about the vaccine they'll want to give the newborn at the hospital and whether you will give it?

Bat-Sheva, I started going through the doc list on this forum and I am about half way through. I've found some emails. Those who don't have email, do often have fax. That would also be a good way to get in contact with them. Like email, you can collect your thoughts and get all the info out without being interupted or forgetting anything, like what happens in an intial phone call. Hopefully, I will pm you the contacts tonight.

Yeah, I remembered he's not taking it for acne, but, I also am not sure what that particualr ab does to the skin. When I am sick, I will still have a few breakouts. That connection isn't uncommon. Nor would I be concerned about it even if he is on meds. I don't think that necessarily means it's not doing it's job with infection and strep. If by any chance the breakouts bother him or he is self conscious, make sure he drinks more water and you can get clear topical meds to apply.

I was looking for one thing and stumbled on another. I remembered this thread so I thought I'd post it. "1: Pediatr Neurol. 2004 Aug;31(2):119-21. Links Restless legs syndrome: association with streptococcal or mycoplasma infection.Matsuo M, Tsuchiya K, Hamasaki Y, Singer HS. Department of Pediatrics, Faculty of Medicine, Saga University, Saga, Japan. Group A beta-hemolytic streptococcal infections have been reported to cause neuropsychiatric symptoms, such as chorea, tics, and obsessive-compulsive disorder, presumably through autoimmune damage to basal ganglia. Mycoplasma pneumoniae infections have also been reported to cause damage to the basal ganglia. Restless legs syndrome is a movement disorder with focal restlessness, an irresistible desire to move, and exacerbation by long periods of sitting or lying. We present three children with transient restless legs syndrome-like symptoms possibly associated with group A beta-hemolytic streptococcal infection or Mycoplasma pneumoniae infection. One of three patients had persistently elevated enzyme-linked immunosorbent optical density values against human caudate and putamen. PMID: 15301831 [PubMed - indexed for MEDLINE]"

I saw your name pop up for the Saving Sammy fan pages for a request of people contacting you w/ similar histories. There is a list of docs of this forum and it does vary from Beth's list. It can be found at... http://www.latitudes.org/forums/index.php?showtopic=6428 But I do agree that keeping with the experts in this field ( like Dr T) would probably prove to be the most beneficial. Is there anything we can do on this ned to help you track down contact info for any of the docs listed on Beth's site?