thereishope

I keep trying to explain to doctors, once that Pandora's box opens, it never truly closes. The first trigger was strep for my son. Since then, I have seen smaller setbacks with a cold and allergies. When it was the cold and allergies, the symptoms were not remotely as bad and there wasn't a long recovery. Ibruprofen helped with the cold and the behavior restabilized once the cold passed. With allergies, as long as he took dye free Benadry, the behvaiors remained stabilized. Strep still remains the main culprit that causes the most damage, the most severe behavior changes and involves a lengthy recovery.

For some reason docs are leary to call people carriers. My PANDAS son, my toddler daughter and my older son ...none get symptoms of strep. They weren't going to swab my toddler because "kids that young, don't get strep". Well, she had it. Also, tell the doctor you want cultures. When my husband went in, he had a fever and couldn't swallow. They said it looked like nasal drainage. When the rapid came back negative, they were going to send him on his merry way. He insisted they culture because of my PANDAS son. Guess what...the culture came back positive. Cultures seem to be common in peds' offices, but not for adults. They tend to trust the rapid for adults.Don't.

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I believe strep can live for 3 weeks.That's also why if you have strep thraot, you must change your toothbrush after being on antibiotics for 24 hours.

If anyone is interested, I did come across a website that carries Fish Free Omega 3's that do not derive from fish oil. I was tempted to get them because I didn't know how my son would do with any "fishy taste" regular Omega 3's might have, but it ended being too pricey and I passed. But it would be good for kids w/ fish allergies. http://www.heronutritionals.com/vitamins.jsp?productid=4

Do you remember why flax seed oil is better? I just bought stuff with fish oil and he's actually willing to take it. My head spins when I read everything that might help him, but actually trying to find things in forms that a picky eater will take is so hard.

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I remembered many parents saying they noticed their children increasing carb intake during PANDAS episodes but didn't know why. Well, I was watching tv this morning and they explained it. Carbs increase serotonin levels and, in turn, causes people to feel calmer and more relaxed. So, when your children have that urge to increase their carbs during a PANDAS episode, their body is actually taking care of itself and trying to correct something that it realizes it is lacking.

I'm sorry you're going through this again. The feelings of being lost, mad, etc are normal. I've often felt numb to then be overcome with crying and hyperventilating. I don't really know if there are true ways to cope with it. Maybe the best advice is NOT to look at old pics of your child and remember how it use to be. It's tempting, but if I did that when he was sick, well, I think I would totally lost it. Always look to the future and somehow know in your heart that you guys will overcome. It's so hard to feel and think that,but that's how you'll find your strength. Know you have many, many people praying for your family. Did they rule out if any other infection was back and that was the cause for the relapse? Are they changing what they are going to do for her post IVIG to try to guard from another relapse? Like a different antibiotic? Perhaps list what protocol your ped was following post IVIG so others can chime in advice on different things you can try this time. My son hasn't done IVIG, but I'm sure otehrs can give you their opinion . Keep us posted.

If your kids are like mine and when they're bored and doing #2, they probably move around on the seat more than you realize. Also, some urine might actually spray on the seat and you don't even realize it. I think you can do the "cleaning the seat every time" thing only when you find out one has v strep. You don't want to cross that fine line of making them self conscious or like something is wrong with them. If you can, just sneak in there when they're done.

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Do you put pantiliners on them? I know they're young, but that would have "guard" their underwear. Don't use things like babypowder in their underwear, that'l make things worse. If they don't have adverse reactions to bleach, I would suggest bleaching the underwear. Hopefully, once they get older and go through puberty, they'll bodies will "clean out" any remaining, hiding strep better that is lurking in the female tract. I think you know what I'm talking about, but some men may not want to read the details:)

I know of a mom who has a girl who had her first dramatic onset this year. She has had strep in previous years but the mom never noticed any dramatic changes at the time. In hindsight, she realizes there were small changes. Like she would go through waves of her daughter keeping her room cleaner/ more organized than usual. In hindsight, she realizes it was probably PANDAS and OCD surfacing, but nothing so dramatic that she'd be concerned. This last time, though, it was dramatic and extreme. It seems w/ her, it built up over time. Hi Kim, yes, both girls! I hear it can have a genetic componet. We had the Dr. Cunningham test done and my 8 yr old is solid mid range and almost 7 yr old is on the lower range. Their symptoms present themselves in very different ways. If you are interested, I can send you their history. If so, PM me your email address. I would be happy to share it with you. Younger dd - titers are not elevated and I've never seen them elevated. First strep infection before 12 months old. She's currently doing very well after a few years of doing very poorly. Older dd - just had titers checked and am waiting on the results. First strep infection around 16 months old. She's not doing well right now. I guess they are taking turns! They both have sensory processing disorder (much worse when they were younger). They are both gluten intolerant and possibly have Celiac. Susan

Okay, now I just thought of one way out there. If infected girl #1 wipes herself then goes for more toilet paper, can she be transfering it onto the toilet paper? Then girl # 2 pulls toilet paper down to use and in fact, infects herself with the tp? Sounds far fetched, but think about it.... Do they usually have infections at the same time?

You're tested for strep during pregnancy a few weeks before due date. I think it may be 2 weeks. I'm trying to think what could be causing the recurring v strep infections. I don't think this could be the cause but have you changed brands of soap, bleached the tub in they take baths and not showers, wipe toilet seat after every use, bought new towels or washed towels in heavy detergent with hot water? Maybe buy white towels that you can bleach in between use. Including white underwear. Maybe the detergent isn't killing it off.

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I don't know if you answered this in another post, but has she been tested for strep? Have you noticed any other symptoms of a cold, allergies, etc?

Over the last few days I have seen some questionable behavior in my son, but I am not to the point of taking him for a strep test. Even though I see small things I do not remember seeing a week ago, I still see improvements too. I am "testing" him by exposing him to things that set him off before. I am wondering, for him, if it is the heat and high temps that have returned to our area or whether he has fall allergies. Spring allergies caused a setback in April.I am keeping a close eye on him. I know in my heart my Mommy instinct will kick in and I will KNOW he has strep again if that defining moment happens. It hasn't yet. My suggestion to you is to have a strep test done if in your heart you think she is having a full fledge relapse. Was strep the culprit the first time? I'm sorry, but this disorder is so cruel. I was in the same position as you. I had my son back for a few weeks, then BAM...strep again. It was such a bad time in my life. I didn't have a true break between episodes.

When my son would go to school in the early stages of recovery, he'd be okay in the class enviornment but when we got home, we knew to give him an hour or so to "deprogram". He'd be short tempered or wanting to be by himself in his room. I learned to just let him be and he'd come around when he was ready. He isn't like that now. Stress and viruses may make some slight symptoms, particularly OCD, resurface. If that happens, they should diminish once the cause is gone. It may stick a ound for only a couple hours or a few days, but it shouldn't be permanent. You'll learn/see patterns as time passes.

Well, my son did not go tthrough IVIG, so I can't answer from that perspective about how the bumps in recovery might be. What I can say is my son (5) is no longer in the midst of a PANDAS episode, but OCD had lingered. I had to change the way I dealt with it. From letting it go during an episode to challenging it head on. Once I did that, he recovered rather quickly. I think the fact that she's 3 right now is in your favor. In terms that, if she has any residual problems, she is young and her brain can get retrained faster. Is she on a vitamins or supplements? There are things out there a 3 year old can take that may help ease OCD issues. Right now, I would say my son wears his heart on his sleeve more. He may get upset faster and tear up faster than one may expect a 5 year old boy to do. I've taught him breathing techniques for when the crying comes on full force. Sometimes I see behavior I question, but then I wonder ..... "is it just his personality now". You really have to get to know your child all over again.

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That reminds me that my son went for screenings with the OT in Early Childhood in the school district. She did find slight sensory issues that was not within the average range in some areas, but nothing over the top that warranted therapy. They said that's common with speech issues (which he has). But, again, no ADHD was mentioned.