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Everything posted by simplygina

  1. DS complained a bunch at one point. I realized, after questioning him, that the taste and smell of the refill we got was different because we'd switched pharmacies and they used a different manufacturer. When we went back to the original for the next refill he was fine. could that be an issue?
  2. My guess would be they would start with an SSRI. Then likely respirdal. Was it a migraine type thing? Sounds a lot like one. I've noticed that a lot of the kids with PANDAS have migraine type incidents. DS used to have them frequently. When we starting the magnesium supplements and cut out foods known to trigger migraines (for him it was nitrates in food like bacon & salami, others are cheese, & chocolate) they went away. We also realized that too much TV and high action movies (especially in the theater) were triggers for him too. The only one he's had in almost a year wa
  3. We've done therapy pretty consistently since DS was diagnosed with OCD 2 1/2 years ago. It definitely has helped. He has worked on some specific issues and over come them. I think the best benefit though has been him learning what it takes to do that. There have been several things lately that he has tackled on his own using the steps he learned. I think regardless of whether it is PANDAS induced OCD or just regular OCD, the steps to overcoming it are the same and CBT and ERP do work if the child is willing to do the work it requires.
  4. Did you mean 11 months ago? $1400 X 11 = $15,000 (11 years = $184,800) I don't think you are screwed. I think you made the right decision. I was told that our insurance wouldn't pay for IVIG and it would cost around $2,000+ each time. None of our local PANDAS doctors take insurance. We spend hundreds a month on supplements for which our insurance pays nothing. And they also do not pay for half our labs. I have no idea why we have insurance. Same boat here. We do have insurance but we are also self-employed and it is expensive. We can't look around because we got our current polic
  5. is really watching how much "screen" time he gets. We have discussed the screen time issue at our house as well. Research says you burn fewer calories watching TV than sleeping but the screen time seems to ramp my daughter up too...does anyone know the root cause of this TV/behavior issue? I read that too. That they actually now realize that we can function below our basal metabolic rate, lower than sleeping, which they used to think was as low as it goes. Talk about a negative calorie burn! I've read several different things. One is that the flicker of the screen, especi
  6. Extreme irritability was probably the first symptom we ever had and remained pretty constant for about 5 years. Just a total lack of coping and flexibility. The first thing I would add is a high quality omega 3 source. My son tolerates fish oil fine and takes 1000 mg 3 times a day. Some people prefer flax seed oil. We noticed that there was an improvement with 25 mg Zoloft. We started it before we knew it was PANDAS. More introduced a whole new spectrum of issues and less we start to see more crabbiness again. If you want to go a more natural route you could try 5 HTP or St. Joh
  7. My son also has trouble with getting stuck on an idea and not being able to let it go. I never thought of it as a Just Right issue though. His Just Right OCD is having to do things over and over until they feel "just right", like touching things or opening and shutting things, etc. though I guess I can see how this would fit in with all of that. Anyway, I read a great book called Magnificent Mind at Any Age by Daniel Amen and he talks about an "inflexible anterior singulate gyrus" in some people, especially those with OCD, though not everyone who has it has OCD. It is the gear shifter i
  8. Well here we go again. DS is definitely ramping up and I'm not sure why. Tons of tics in his neck, the most i have ever seen, which are beginning to hurt his poor neck. the epsom salt bath doesn't seem to be cutting it. he's also more emotional volatile again. i guess he broke down in tears at school on friday because he didn't understand the math assignment and the teacher kept telling him to just do his best because it was new material to everyone. then a friend called him a crybaby and he pulled out his scissors and threatened to cut the boys shirt, then realized he was out of line an
  9. For now we also are just trying to be as "clean" as possible. We cut out as much "fake" food as we can. I've been focusing on preparing whole natural foods with more vegetables and fewer grains. Ideally I would like to eating more salmon, but so far I just haven't been very good at preparing it so that it tastes very good. I do notice a difference in DS's behavior when he has had junk, especially dyes and nitrates. He struggles with wanting to feel better and wanting to be "normal", though we keep talking about the fact that what seems normal now is anything but! We keep saying we
  10. OK, that is really interesting! I take spironolactone myself because I tend to have too much testosterone. So they don't worry about giving it to boys that are nearly in or going through puberty? I ask because DS is only 10, but definitely starting. I'd be happy to slow it all down really as long as it was safe for him.
  11. From experience I would say yes. Last September my son's tics started after his brother came down with the strep the first week back at school. They get better and worse, but we've never been able to get rid of them completely.
  12. No wisdom to offer. Unfortunately I'm in the same boat. I see some "interesting" things going on with my 7 year old and wonder if he too has PANDAS. His list of things that make me wonder is very different from his brother's, but that shouldn't surprise me, they are opposites in just about every way. I've decided to get the Cunningham test done for both of them just to see what the results are. I think the age regression could definitely be a sign of PANDAS but the way he is acting it out reflects his feelings about his current life situation. Does that make sense. Maybe it's a
  13. I will definitely try that... do you have a specific brand? I looked at the website and there are so many different brands, it's hard to make up my mind. Thanks! We have tried both the Jarrow and the Healthy Origins brands and both seemed to work equally well. Get the powder. To get a dose that is shown to work they would have to take a gazillion capsules. It tastes rather sweet so it is better in some things than others. My son hates it in milk, but doesn't mind it in juice or hot cocoa or kefir. Start with 1/4 or 1/2 teaspoon and increase it slowly each week or so.
  14. I think it's the intrusive thoughts that break my heart the most. It's as if their brain takes on a sinister life of its own and picks the things that mean the most to the child. My son is a big time animal lover. When we got a kitty he was totally in bliss. Then he started to worry that he would kill the cat. It took him a long time to tell me that. He's had other thoughts that he would hurt various members of the family, then end up in jail for the rest of his life. He also really worries that he'll smoke when he hits high school. That one I was almost glad to hear, but it is deadly
  15. May I ask how the dosing would differ for a child with PANDAS? Thanks again all. My son was put on Zoloft in February 2009 before we realized we were dealing with PANDAS. We started with 25 mg and saw a very positive bump in his mood and coping abilities. A month later we decided to move up to 50 mg to see if more would actually help with the OCD. We thought it might be but we were already heading into spring/summer which is generally a better time for him anyway. During the summer we bumped up a few more times times and settled at 100 mg for a few months, still thinking it mig
  16. The only place I know that I can spend $100 for half a grocery bag full of stuff! Kills me every time!!!
  17. I give DS a supplement called Wellness Formula from Source Naturals. It has a whole bunch of herbs that have anti-viral properties. Not really sure if it helps or not, but he hasn't been sick at all since he started taking it about a month and a half ago.
  18. Pretty common with PANDAS. My son's last exacerbation started with a sudden increase in tics. He always had some tics and some OCD going on, but it is usually very mild and manageable. In February he started exhibiting pretty much every tic he's ever had all at the same time (usually he just has one or two and seems to cycle through them). I didn't know what to think. That was on Saturday. Sunday night he told me his throat and ear hurt. Monday morning we went to the dr. and he had an ear infection and a sinus infection.
  19. I know how hard it is to wonder about the child that you've thought of as the "non-Pandas" kid is. I've been watching my other son like a hawk, and there are definitely some things there that make me wonder. At least you know there has been a strep infection. My son is totally asymptomatic (normal symptoms anyway) and gets it both in his throat and his bottom. 3 weeks ago he had a rash on his bottom and leg that looked like Scarlitina to me. I took him to the InstaCare and she told me she couldn't swab it. She also didn't swab his throat or his bum and told me she was just going to give
  20. Our pediatrician sounds exactly like yours. Skeptical and unwilling to take the time to learn more about it! I want to shake him and say, "THIS IS MORE COMMON THAN YOU THINK! YOU SHOULD BE TRYING TO CONNECT THE DOTS BETWEEN PHYSICAL ILLNESSES AND PSYCHOLOGICAL AND BEHAVIORAL PROBLEMS DAMMIT! IT'S ALL RELATED AND THAT IS PART OF YOUR JOB!" He even gave me the same song and dance about wanting to make sure I don't spend a lot of money on something that hasn't been proven to work. I reminded him that abx aren't generally considered super "alternative" and the cost is cheaper than the SSRI my
  21. I was thinking last night in bed that my son is more of a traffic cop than health monitor! He is always asking me how fast I'm going and commenting if other vehicles speed past us. His brother likes to fool around with the un-used middle seat belt to make him think he's un-done his to watch the freak-out. I used to not allow the Gameboy in the car because I hoped we could have some nice conversation (I've read way too many parenting books I think because it just doesn't happen!) but realized he would just spend the whole ride a nervous wreck so I quickly reversed my ruling on that one!
  22. Oh yes, my 10 year old son is a rule follower and plans to NEVER drink alcohol! Which is fine by me and I plan to remind him of that every day he is in college! I remind him that alcohol is legal at 21 years of age and is VERY bad for growing bodies. I also showed him a study or two that indicates 1-2 drinks is actually good for an adult. Now if I could get him to realize that soda is far worse for him that a glass or two of wine is for me, I'd be all set! I'm not really a big drinker, half the time I open a beer and leave it sitting somewhere after taking a few sips, but I am a prou
  23. Wow! My son and your daughter have so many similar issues! My son has similar issues with his little brother. He admitted that he feels like he is "contaminated". I can tell how well he is doing by the way he treats his brother. There are definitely some things that I am tough about, and others that I let slide until I feel we can tackle it successfully. That said, I refuse to be tapped on! Sleep is one that we've worked on incrementally, but an issue that I refuse to go backward once we've progressed. DS slept in our room from 6 weeks (after spending a week in the hospita
  24. My son is doing 1000 times better on Biaxin, but his tics still are worse some days and better on others, but the overall trend is considerable improvement. We haven't had a 100% tic free day yet though. He's been taking it for about 2 months now. We tried cutting back to a half dose for a week and things got worse for him on about day 4 so we are back up to the regular dose again and doing better again. I'm planning on it taking quite a while for him to get well. Once their body's immune system is out of whack, lots of things can make things worse, even on the abx. The fact that he did
  25. I've been reading more and more about this and it all makes sense to me. It really freaks me out and I think that is because it feels so overwhelming and out of our control. I know there are things you can do inside your house to lower exposure, but beyond that there isn't much you can do. and it isn't just people that are being affected. one theory of why we are losing our bee populations is that the radiation is throwing off their systems as well. i would imagine it affects any species that lives around people and populated areas.
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