thereishope

No Lyme here. We do not live in an area with "high incident of Lyme" either.

My son did not have tics.

Welcome. Has anyone thought that the spitting was a combination of things? That it may have started from the swelling, but then morphed into more..whether it be a combo of the swelling and OCD or a tic? When was the last scope? I am assuming the swelling is still there? As for that rash, has anyone mentioned if it could be strep? I don't think strep on the skin would always raise titers, but it can affect PANDAS symptoms. Have your tried any creams on that rash? What other meds, supplements is your child on? I ask since swelling may be a rare side effect of some things. For example, my optic nerves swell to the point that I will get symptoms similar to a brain tumor with higher dose of Vitamin A. So, I suggest also researching all known side effects for all supplements your child is being given.

That's great to hear!

Good point. I remember reading that and didn't even think how it's not that easy. Very good point. I suppose one may say she could have had an undiagnosed infection that the body eventually rid itself of without antibiotics, but for that to coincide with acupuncture and waking up one day and all is well (hiccups completely gone when she woke up one morning), doesn't make sense.

I was gonna say the same thing, Fixit...Uneventful is good! Glad all is going well and the appt went well too!

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Do we know anything else besides her moving around a lot and being involved in the murder at that time? I haven't read much about the case so I really don't know. Before anyone can take a guess that PANDAS would have/could have played a direct part in something like this, we need to know more. I believe just because someone has PANDAS, it does not become the reason for every negative action that person does (especially if they are healthy at the time)....even though, yes, it could play a role if their health was in an exacerbation at the time.

Oh My Goodness! That's one fear I have about school buses and my kids that ride them...an accident. I hate hearing fire trucks and police sirens soon after they leave or minutes before they are expected to get home. My son would witness something happening, like me breaking my toe and then ask reassurance questions for long periods afterwards if HE had a broken bone. If he did ___, would he break a bone, etc. This is a hard one for you. You need to let him know that just because that happened to that boy, it won't happen to him, but you don't want to start the circle of reassurance questions. As for telling him that the boy intentionally ran in the front of the bus...don't. Oh, my...this is a a hard one! I believe you do need to talk about it with your son. Do it at a time when it's calmer in the house and well before bedtime. Perhaps if you start the conversation and not wait for him to start it, it would help nip reasuurance questions? I may say start by saying something like, "I know what we saw this morning was scary, but ___ is okay. Are you okay?" Make it simple. Don't take this as the opportunity to remind him bus safety or anything. That may make him more scared.

I remember reading about this girl being on the Today Show when Lauren was on. At that time, yes, I thought PANDAS. But is it bad of me, now that she is involved in this, to not want to bring PANDAS into the picture with her? Even if she does have PANDAS, it doesn't mean that caused her to take part in this murder. The thought of this disorder being dragged into this when it may not even play a role in it, would worry me. It also worries me how people may view our children. I can see a spiral occuring with that.

My son used to be horrible in the mornings. Can't even begin to explain what it was like to get him out of bed. He would be awful and in full blown PANDAS mode when we'd finally get him in the bathrroom to pee in the morning. There were days he'd go in that bathroom one child and walk out another. He'd suddenly be happy , no rages, and seem okay. We'd say he peed it out of him:) It wouldn' t last all day or anything but I took it when I could!This happened on more than one occassion, but not every time.

Wasn't that what Dr Cunningham listed as a possibility for PANDAS in the future when P.Mom visited them? So, should we be nervous/scared? I wonder if they're talking about drugs like Haldol and Orap? Those are supposed to be dopamine antagonists and were mentioned as meds for treating SC in a lot of the literature I read back when our son was diagnosed ARF/SC. Dr. K told us that he'd seen haldol in particular really put PANDAS kids "over the edge" though, so seems like this is pretty risky for PANDAS.

If he backslides off antibiotics, he needs to be on antibiotics. I hate telling you something you know you need, yet are nervous your doctor will not give. So, would the question become if a child is dependent on antibiotics to maintain remission, is that a true form of remission? Would that child be a candidate for IVIG? I'd have to think on that more, but I think I'd say if the child cannot fully recover from that exacerbation and after a certain amount of time (unfortunately, time unknown), you cannot lower antibiotics, it's something to look into. I would say (after finding out remission has been for 3 weeks and last onset was in August) that you can still see great strides in remission. That you shouldn't feel you've aleady hit a plateau or road block. I'll give my opinion, but I want others to comment on my opinion...I would say that since your child is 5 years old, got 90% better in 3 weeks, you don't need to rush into IVIG right now, but don't rule it out. Now I don't know if you know this, so forgive me if you do, but you know IVIG is not a cure for the entire disorder, correct? I totally agree when others who say to search out other triggers (such as Lyme) if you decide to do IVIG or feel you hit a road block. Be safe and rule it out. Have you tested all other family members yet for strep? Edit: Perhaps I should add that my child is in remission and even though I know I could lose him again to another strep infection, I am not seeking out IVIG. For me, IVIG for my son would be reserved if he has an exacerbation he cannot recover from.

How long has your child been at 90% remission? How long has it been since the last onset of an exacerbation? I ask since full remission can take quite awhile.

I say go to the doctor. If he is reluctant to perscribe antibiotics with a negative rapid (doctors are usually more lenient with antibiotcis and adults), ask if he could make a clinical diagnosis or give you antibiotics while waiting for the culture. It could be viral as was the case with me recently, but it's better to just go and get it checked.

Strep can occur in the throat, gut, in the sinuses, vaginal strep, anal strep, strep on the skin, ear infections can be strep. On this forum, I believe some have swabbed + for strep with anal strep and vaginal. Gut is through a stool test. I think you can only test ear infection if the ear drum perforates and the fluid leaks. As for sinuses, I can't remember if anyone had swabbed the nose and got a + strep, but then the infection can be very high up in the sinuses as well. However, it is on medical websites that sinus infections can be caused by strep, not always the case but can.

I am so happy for you and your son!

Heavy sigh. I'm sorry! The idea of pulling him out of reg ed every time he has an exacerbation is bad. He needs stability and it would also label him to the other kids. Kids establish relationships with teachers and this idea would make things worse. Does he already get any services from the school district? This woman you refer to, what's her title in the school district? At a certain age, the school district is required to provide services to kids that meet the criteria. They should not tell you he needs to stay in a private school. Good luck!

It seems like OCD is mentioned throughtout, then SC is specifically mentioned. However, it does add the small fill ins like "brain dysfunction and OCD" "strep affects the brain and leads to a number of physical and mental ailments" “We were able to show that these antibodies are binding to receptors in the brain and changing the way certain neurotransmitters operate, leading to brain dysfunction and motor and behavioral symptoms,” Prof. Joel says. I also noticed they did not exclude other infections as being the trigger,even though strep was what was the emphasis. They stated "childhood infections like strep". So, I think the article may emphasis the OCD component of it and how it can help the OCD community, but I think they know there is much more than that involved. It is interesting that they don't mention the acronym PANDAS. It would have been nice in the second to last sentence, if it would have been added that many can have strep w/o symtpoms as well.

It's been mentioned on here before that we needed to wait for one more study to be published before the NIMH white paper is released. Do you think this is it? I had to read the article a few times before posting to make sure there wasn't misinformation. I kept thinking "the mouse model by Columbia" and was a little confused at first. So, I think what you said (a replication of results) may be the case.

http://www.aftau.org/site/News2?page=NewsArticle&id=13179 Obsessing Over Strep Throat in Kids A common infection in children, strep throat can lead to problems with a child’s heart, joints or brain if left untreated. And when the brain is involved, motor and mental functioning may be compromised, leading to syndromes such as attention deficit disorder and obsessive-compulsive disorder (OCD). While scientists have speculated on a link between OCD and childhood infections like strep for more than two decades, Prof. Daphna Joel and her team of researchers at Tel Aviv University’s Department of Psychology have now scientifically demonstrated that strep can lead to brain dysfunction and OCD. Dr. Joel says their breakthrough could lead to new drugs for treating OCD, and may in the future prevent the psychiatric disorder altogether. Conducted by the PhD student Lior Brimberg and in collaboration with Prof. Madelaine W. Cunningham of the University of Oklahoma, the research, recently presented at the 13th Congress of the European Federation of Neurological Societies in Florence, Italy, is expected to be published by the beginning of next year. How strep attacks the brain “It’s almost impossible to show how strep can lead to OCD in humans ― almost all of us, even very young children, have been exposed to the bacterium at one time or another,” says Prof. Joel. “But childhood seems to provide a distinct window of opportunity for the disorder to take root through strep infection,” she warns. Working with the world’s leading specialist in strep-related heart disease, Prof. Cunningham, the researchers developed a new animal model to show how exposure to strep affects the brain and leads to a number of physical and mental ailments. In her Tel Aviv University laboratory, Prof. Joel and Brimberg created an animal model using rats exposed to the strep bacteria. Comparing them to a strep-free control group, Prof. Joel measured a distinct difference in behavior in the strep-exposed animals. First, the strep-exposed rats developed a strep antibody which deposited in their brain, confirming the suspicions of previous researchers. Those exposed also developed balance and coordination difficulties, as well as compulsive behaviors such as increased and repetitive grooming. More important, they also found that the strep antibody binds itself to dopamine D1 and D2 receptors in the brain. This finding is in harmony with the fact that one of the main drugs for treating Sydenham's Chorea, a motor disorder associated with strep, targets these same dopamine D2 receptors. “We were able to show that these antibodies are binding to receptors in the brain and changing the way certain neurotransmitters operate, leading to brain dysfunction and motor and behavioral symptoms,” Prof. Joel says. Prevention before the cure This breakthrough finding could lead to new modes of diagnosis of the disease and provide a new platform for drug developers seeking to treat or cure OCD. According to the American Academy of Child and Adolescent Psychiatry, OCD affects up to 2% of all children and adolescents in the U.S. The disorder is characterized by recurrent intense obsessions and/or compulsions that may cause severe discomfort, anxiety and stress, and interfere with day-to-day functioning. Prof. Joel stresses how important it is for parents who notice signs of strep throat to ensure that their children get treated with the appropriate antibiotics in a timely fashion. Strep-induced OCD will likely continue to be a major problem in the developing world where strep is not treated adequately, she concludes. --------------------------------------------------------------------------------

No one in my family, including me nor my husband, are getting a flu shot.

At the time, I didn't know carbs caused inflammation so I didn't hold him back. It was also the exacerbation where he didn't eat so I was just happy to see food going in his mouth. At the time, it didn't seem to cause anything negative in him and the carb cravings started very early in recovery. Like the day he stopped the spiral down, the carb crave started. Over time, I've seen that my son's body seems to "guide" him in what he should eat/avoid. It wasn't until PANDAS hit, that he now rarely drinks milk. He doesn't want it, even though he likes it. So, that's something I don't push now. My gut just tells me his body knows what he needs (for the most part, he IS a child)to keep in balance. I very briefly tried gluten free during one his exacerbations, but don't know if I tried it long enough that I even would have seen any results if it would have helped. I don't think my son has any gluten sensitivities or allergies or celiac sicne he's okay now and even though we've altered our diet to being healthier, avoiding gluten is not part of it. Oh ya, my ds does the carb cravings too and I can't believe what he packs down. Right now his throat hurts so badly that he isn't able to eat. I wonder if he'll jump into carbs when he feels better. Do you worry about the carbs (gluten) being inflammatory? I've been wondering about going gluten-free but trying to figure out how on earth I can do it.

My son had t and a at 5 years old after his second exacerbation. It was only his second strep infection, but the ENT wanted to tak them out to try to avoid another. My son had a very fast recovery from surgery. The dr said the younger they are, the faster they heal since they usually don't baby their throat so much. My son did go on to have another strep infection a month after surgery, which led to his third exacerbation. The odds were stacked against him since all 3 of my kids had strep that time. However, that was his last strep infection so far. That was March 2009. I know he may get strep agian, but I will never know how often it helped prevent an infection either. I do not regret surgery. I do also like that since he no longer has tonsils, I will not be looking in his throat and see particles stuck in his tonsils and have to take him to the dr to make sure it's food stuck and not the start of an infection.

There are foods that decrease inflammation like pineapples. You can google foods and decrease inflammation and try to alter his diet to accomodate things like that. Here is a list I got that refers to allergies, but specifically mentions inflammation as well... Otherwise, you can try to find pressure points to help with the headaches. If he'll allow you to, there are pressure points on the feet that can help with some headaches. I did that a lot when I was pregnant and didn't want to drink caffeine or take Tylenol. Foods that help •Horseradish Helps clear mucus and congestion •Pineapples Rich in bromelain, a powerful anti-inflammatory •Ginger Helps reduce inflammation and has an anti-histaminic action •Turmeric Helps reduce inflammation •Onions A good source of quercetin and MSM (a natural detoxifying sulphur that is excellent for the joints) •Berries High in vitamin C and highly alkaline, so helps counteract acidity in the body. Also rich in quercetin. •Vegetables Rich in vitamins, to help reduce free radicals •Fruits (particularly grapes, grapefruit and other citrus fruits) High in vitamin C, a natural antihistamine, and quercetin •Alfalfa A highly nutrient and tonic food •Nuts and seeds Provide essential fatty acids Foods to avoid •Dairy products (except organic natural yoghurt) These can be mucus forming. •Sugar Increases inflammation in the body and reduces the body’s ability to repair. It also depresses the immune system. •Alcohol Can cause irritation of mucous membranes. •Excess coffee and tea Interferes with absorption of nutrients •Refined Carbohydrates (such as cakes, pastries, white pasta or white bread). Contribute to the increase in inflammation in the body. Tip: Avoid using chemical perfumes and air fresheners to reduce your risk of irritation.