thereishope

What do the bites look like? What led them to test for mycoplasma pneumonia if no symptoms were present?

I don't have any names for you, but do try to get a reference from here if you can. When my son was having a hard time during his second exacerbation, the neurologist called one of the main guys in infectious disease to see if we should switch antibiotics, and he said that penicillan or amoxicillan would definitley kill the strep! Well, it doesn't. Needless to say, I did not know then what I know now. Just research, research, research. Oh, man, is that one messed up hospital I have by me.

I'm not going to be much help here, but I think others will say you should try to be clear of strep before going onto to IVIG. For those who have had IVIG, does IVIG aid in ridding the child of strep as well? Does she get a follow up test at any point? How many times has the culture came back neg, when the rapid was +? Maybe that was bad swabs. Something doesn't seem right about that. Who is the one choosing the antibiotic to use? Latimer or the ped? Have you tried Zith or Azith? A friend who is a ped once told me that clindamycin is what she gives to carriers, but then I know carriers on this board that clindamycin didn't work. One more thing, did she try the high dose of Augmentin that others have had success with? I'm sorry for all the questions. Just trying to brainstorm things that might help others help you.

Dr Swedo and Dr Cunningham have been added to the list of speakers! Here's a link to the complete list... http://www.autismone.org/content/autism-on...2010-conference

I am so happy for you!

The funny thing is after I posted this, I noticed someone else did too on the OCD board. Chemar mentioned SamE. Actually, I know at least one more person who posted in a different group devoted to kids w/ OCD, who stated that same brand. So, if what you bought doesn't seem to do anything, try that brand. They said it helped a lot. Although, I think SamE is more marketed towards women to avoid mood swings? I remember seeing a commercial for it. So, not sure what the bottle looks like. If it looks feminine, don't let your son see it:)

With us, the steroid stopped the spiralling down, helped him plateau, then jump started recovery. He was only on a 5 days of steroids. However, it still took 2 months in that exacerbation for him to get back to completely himself. I did not see him backslide post steroids. I think the 2 months recovery is still short compared to his 3rd exacerbation w/ no streoid that took 5 months to get better. btw...the episode in which the steroid was used was also way worse symptoms than the one w/o a steroid. So, I have learned with my son's case, that a steroid is very beneficial and that I will beg for steroid if he ever gets sick again. For us, it should part of treatment. I knew he could tolerate short term steroids prior to use since he received one months before for croup.

I remember that. He said he read it on here and that many had seen an easing of symptoms. I just viewed it as a bit more info one can supply to him to aid him in guiding them through diagnosis and treatment. If I made it sound like he was telling his patients to take it, I didn't mean it that way.

I would have loved to see your reaction to relaxation for his treatment. And CBT is soooo relaxing for a child. So frustrating! So, I'm assuming you're being directed to a psychologist? Ask her if insurance will cover a trip to Hawaii so he can get all the relaxation he needs since she deems that his treatment. She doesn't really offer a "diagnosis," I suppose she just thinks he's a stressed out little boy who needs relaxation and Cognitive Behavioral Therapy! Or she could be basing her opinion on the Neurologist that we saw in 2007 who said "It may or may not be Tourette Syndrome." I just started giving him Ibuprofen so we'll see if that helps.

Welcome. So upon seeing the titers were still elevated, did the ped at least put him back on antibiotics? If so, which one? Have you tried giving Ibuprofen (advil, motrin)? Some have seen it help ease some PANDAS symtoms and from what I've read from other Dr T patients, he has even asked them at their appt if they have tried it and what the results were. So, something to try before seeing him.

I'm not denying there's a connection to PANDAS, spasms or pain in the limbs. Just trying to think of something to try. It's hard to sit there and try nothing.

http://www.naturalnews.com/027769_hair_pul...mino_acids.html Amino Acid N-Acetylcysteine Eases Compulsive Behavior Such as Hair Pulling "A supplement of the amino acid N-acetylcysteine may ease the symptoms of compulsive hair pulling, according to a study conducted by researchers from the Minnesota School of Medicine and published in the Archives of General Psychiatry. Hair-pulling, also known as trichotillomania, is a compulsive disorder that may affect as many as one in seven people at some point. Patients feel a compulsive urge to pull out the hair from their scalps, eyebrows or even eyelashes, sometimes creating bald spots. Some people who suffer from trichotillomania will play with or eat their hair after pulling it out. Although similar to obsessive-compulsive disorder, trichotillomania is not the same condition and does not respond well to antidepressants or other drugs. The condition is not well understood, but the neurotransmitters dopamine and serotonin are believed to play a role. Researchers gave a number of trichotillomania patients a 1,200 mg supplement of N-acetylcysteine every day for six weeks. This dose was continued for another six weeks in patients who appeared to be responding, and doubled in patients who did not appear to be responding. Fifty-six percent of patients treated with N-acetylcysteine demonstrated "much or very much improved" symptoms, compared with only 16 percent of those treated with a placebo. There were no adverse side effects reported. The amino acid treatment proved more effective than the success rate of drug treatments, and was on par with the effectiveness of behavioral therapy or a drug-therapy combination. Researchers said that even if the amino acid treatment proves successful in further studies, behavioral therapy should still be used to try and treat the underlying psychological causes of hair pulling. Previous studies haves suggested that N-acetylcysteine supplements may also be effective at treating symptoms of bipolar disorder, obsessive-compulsive disorder and schizophrenia. They are also used to treat acetaminophen (Tylenol) overdoses and nasal mucus buildup. The supplements are available over the counter and by prescription. Sources for this story include: www.reuters.com"

I'm going to out there and just ask if she is hydrated and drinking enough. Could she be having leg cramps from not drinking enough water?

What is your ped saying is the diagnosis then? Does your child's symptoms improve at all with Ibuprofen(advil. motrin)? If they do, ask her the explanation for that.

How wonderful to know you have a community behind you like that! I have gone to the newspapers and local free family magaines, and never heard back.But..I did not have a story of community like yours! I can see the local news wanting to do this. Same with papers. Best of luck and have a happy and blessed holiday!

Stoneyfield Farm also makes a yogurt with probiotics, It's sold in a 4 pack. Has anyone tried that? I get nervous trying different ones since my kdis will only eat thicker yogurt that doesn't need to be stirred.

Gilbert is the confused neurologist I've referred to in the past that my son has seen. He says one thing, writes another, etc, etc.

Just throwing this out there..... If you would consider a steroid burst, maybe it would be a good time to do it while school's on winter break. They won't be around so many kids and illness. I'm not trying to convince you to do one, it's just something to think about. I hope it's better for you soon.....

I hope things settle down for you. Are you giving Advil still? Is it doing anything? Was a steroid discussed?

Amy, you're the perfect exmaple of why the association between abrupt changes and the need for a strep test, even if seen as "just in case', need to promoted. It's so frustrating when you have a medical person aware of PANDAS, knows what it is, sees the sudden onset and doesn't bother to swab the throat just to rule it out. I can only imagine your anger and how it could have been caught sooner. Why do doctors and nurses forget you can be asymptomatic? Why do they refuse to believe children under 3 can't get strep? How can we get through to them? Suggestions please. This really bothers me!

Did you get the family checked for strep? I would take him for a strep test. Your "story" reminds me a little of Lauren Johnson and the sneezing tic. It started out as a cold with the motion of real sneezing. It then morphed into a tic or OCD habit. Like what you are describing about the crotch grabbing. There have also been I believe 2 other kids on here with "picking" issues, specifically with the rear end. Also, remember, a child does not have to have classic symptoms of strep to have strep.

I remember reading this one. It is an update from someone whose daughter was in the original Swedo study. It was posted before you joined. Daughter was at NIH in 1997 , Dr Swedo, Looking for older children, young adults http://www.latitudes.org/forums/index.php?...15&hl=swedo

Welcome. My son has experienced 3 full fledge PANDAS exacerbations and is doing very well now. John, I have seen a 5 year old wash his hands to the point of blood, convinced his little sister was contaminated, he wanted to go to heaven, he wouldn't eat for days. My son would have rages and meltdowns lasting for 2-3 hours and became agorphobic. Hallucinations of bugs and not being to answer simple questions were his mild symptoms. So much occurred I can't even type it all right now. But, I have him back, John. This Christmas I will have a boy that will want to open gifts and actually be willing to show excitement for them. It won't matter where he is sitting or who is by him. I'm not going to be walking on egg shells, worried the day will be ruined for the other kids. My son now wants to go to school and he asks his sister to play with him! Just know in your heart it will all come full circle and he will recover. It' hard to get there, but you know it's worth it.

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I see the difference in pupil dilation between the kids. As for the last one w/ the discoloring beneath the eyes, my son had that too. Tonight I will mess around with putting a few photos online and I will message you them to compare. Hopefully, I will rememer to do that:)