thereishope

Sorry, sometimes I forget you guys do "get it". I'm still not use to having that support.

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The horrible thing is some places are so strict on antibiotics. It's just impossible. You have no idea how much I struggled and fought to get my son on a proph antibiotic. No one will give it. It's not that I'm not trying. Trust me, I am. You have no idea how frustrating it is to stand their have the fight. They ust don't seem to grasp that if they get strep it damages their brain. They will mentally die. They just don't get it. If giving a simple antibiotic would prevent a child from having cancer, I guarantee you, it would handed out w/o hesitation. I'll just stop my rant. It could go forever....

That sounds so much like something my son would have done. As for OCD, phobias, thoughts, etc, the psychlogist told me that is was obvious my son's OCD was different (uh...yeah.....PANDAS). He did not have obsessions, or thoughts running the show. No odd cause and effects going on his head. Definitely find a new psychologist. The first one we went to was worthless. This one doesn't do much (I do most of the work), but she listens, doesn't judge, and would help guide if I needed it. btw..You did great not giving in to him tonight with baseball. That high anxiety or even a meltdown is expected when you are trying to overcome an OCD need. How long did it take for him to calm down? OCD is so much more complicated than I ever thought. Then there are also OCD spectrum disorders. Unfortunately, I can see OCD in so much people do now. Maybe his ODD-like behvaiors are a result of him needing control somehow and that's his way of getting it. A control he is not getting whe he has to give in to the OCD.

Personally, I never saw the show, but does the show "House" do out of the ordinary diseases and disorders? I wonder if the website has a show suggestion spot. I know it's fiction, but still...

First off, I hope his son is well. There does seem to be a genetic factor so it's good he is now aware of it. Second, thanks for letting us know about your conversation with him. Hopefully good things will come of it. It is a big coincidence that you happen to check the board today and how everything else snowballed from there.

I'm not taking the actual poll since my son had just turned 5 and many of the topics wouldn't fully apply to him anyway. However, when we tried to do his preschool homework with him he wouldn't follow directions, wouldn't pay attention, and would change the rules just to get a rise out of us. His fine motor skills were never affected. Some mentioned specifically art. My son is an amazing artist, way above his age. He draws in such detail and can pick apart another image to duplicate it. His art skills never changed during an episode. I did definitely notice a slow down in any progress he was making in speech therapy. He made strong, fast strides in it prior to PANDAS. During PANDAS, he was almost at a stand still. Now, that he is recovered, he is once again fixing sounds and progressing rather fast. I believe the lack of progress during a PANDAS episode had something to do with what was going on with his brain. Speech therapy is retraining the brain.

When asking this question, it also might be important to know what antibiotics each child was on. That might effect how fast or slow they started to some some improvement. My son was on amoxicillan.

The first time, I saw improvement within the first 5 days. The second time it took longer. To be honest, I cannot remember how fast it took to see improvement the third time. The first time he got sick, he had his behavior changes for a few weeks before we found out he had strep. Pre-antibiotics , I did have some moments of hope that it was going to go away on its own. Like I was able to limit his excessive hand washing. However, those glimpses of hope would get erased by more meltdowns and more problems. Pretty soon, those good times were completely gone. If anything, those moments of hope made things worse because it bought him more time before the doctor saw him. It wasn't until he was finally put on antibiotics for strep did I see a more consistent upswing of symptoms. But, let me add, it still did take months for him to fully recover.

There is a fan page on fb for it already. No activity for it yet, though. http://www.facebook.com/search/?flt=1&...2.2014666233..1

Okay, you can tell I'm a big "facebooker". You can always start a cause page and open a non profit account that people can donate to. However, I don't know much about those kind of accounts.But you can pick who that money will go to (ex. Cunningham for further research). All foundations have to start somewhere, right?

My husband works on things like product packaging. If you need any help w/ a postcard, perhaps he can help. Do you know if the old PANDAS logo is still in use? That sad looking panda bear? Also, in regards to my comment, I have not read the book yet and don't know her full story. I see the book is being transferred between libraries and hopefully I will get it tomorrow. It's sad that we have a big library system and they have only 5 copies for the whole county. My branch is the busiest and they're not even going to get one.

Do you have a facebook account? You can start a Saving Sammy group or fan page. You can also send a link to the book to your friends.

I've thought about writing a letter and distributing to local peds, psychologists and psychiatrists, but have yet to follow through. I have yet to read the book. I'm waiting for my library hold to come in. I also want to wait to promote it until I see her Today Show appearance and see if she at all touches base on how some families need to go steps further and do IVIG and PEX. I want to be careful to promote the book to peds if they might read it and think antibiotics are the "cure all" for everyone.

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If it means anything, even my son who did not do IVIG had a sawtooth pattern while healing. It's was odd that he'd be doing well, then get bad again, then get better again but better than he was prior to the setback. I learned not to freak out immediately because maybe meant more healing was about to occur.I'm seeing some of the same patterns in kid who get IVIG as in kids whose bodies are lucky enough to get better on their own. Those kids just needed that IVIG jumpstart.

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You have no idea how many times during a PANDAS episode my son embarassed me by spitting at strangers at Walmart when they tried to just say "hi" to him. That's humiliating.

That's a good question. My husband thinks I let him get away with too much now that he's doing well. I admit, I do. I still see that boy who went through so much and I feel bad reprimanding not knowing if he will "gone" again tomorrow. I want him to be happy and I don't want to fight. In a nutshell, during a PANDAS episode, I don't reprimand and I don't take away priviledges.The reasoning isn't there and he can't undertstand the cause and effect nature of taking away priviledges. Post PANDAS episode, I go back to regular parenting as much as I can, but I do let him get away with a lot more than I should.

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My kids do not get symptoms of strep. None of them. I only know to take them in when my PANDAS son begins with meltdwons, OCD, etc. He's had rapids come back + and once only the culture came back +. They are still contagious even when they don't have classic symptoms. I send him to school until I get confirmation of strep. But then I keep him home until he's been on antibiotics for 24 hours. If he spreads it to the class, it may work his way back to him.

Let me give some background on my son first before I begin some things I’ve experienced with OCD. My son is 5 years old, has had PANDAS surface 3 times, and never had IVIG. He’s only had 10 day courses of antibiotics and a steroid once in the middle of his second episode. He has seen a psychiatrist and a psychologist during the tail end of his third episode when OCD just wouldn’t go away. Everything else had settled, but that pesky OCD was determined to stick around. At 4 months since his last strep infection and at a point where I believe behaviors as a result of PANDAS were gone, he still scored a 19 on the Yale Brown test for OCD. That put him in the category of clinical OCD. Granted to nearly as bad as the probable 35-40 he would have gotten during an actual episode. But still bad. When we saw the psychiatrist she said that she did not want to start him on meds. That many people get better w/o meds and only therapy. Therapy alone can actually change the chemicals in the brain. If after 2 months of therapy, if we did not see results we were happy with, we could back to her and she would prescribe Zoloft. She said that is the best one to start with. Also, if you do start SSRI’s, give them time. Many people, and doctors, give up too quickly and don’t give meds a chance to really get in the system. However, let me add, that I have learned since then from other PANDAS parents, that many do not respond to SSRI’s and some have adverse reactions (in terms of behaviors) from them. So there’s a lot to think about before doing meds. Anyway, we left the psychiatrist office and continued to wait for the hospital to call telling us when an appt would become available. Knowing it would be months, I read the book “Freeing Your Child from OCD”. I learned a lot from it and used many of the approaches that were suggested. I recommend it “Talking Back to OCD” was recommended, but I never read that one. So, I began to tackle my son’s OCD on my own. I think, but am not positive, that my approach was similar to Exposure/Response. Meg’s Mom on this forum follows that program and can explain that more. Anyway, my son began shedding his OCD rather easily. Or I guess I should say easier than I thought it would be. There is anxiety and possible meltdowns when you fight OCD, but the longer you work on it and don’t give in, the anxiety subsides then disappears. So, 2 months later since I started tackling my son’s OCD and he has none left. When I started, he had about 15+ rituals. Now he has none. I know your son’s is thoughts. The psychologist said those are the hardest to get rid of. So you have a bigger battle in front of you, but I believe it can be done. Is he seeing a psychologist right now? If not, I would strongly consider getting one and trying to get one with knowledge of PANDAS. That would be helpful since they would know that you cannot tackle OCD if your child gets strep and is in the middle of it. You only really need to see a psychiatrist if you seek meds. A psychologist can diagnosis OCD on their own. I know your son went through IVIG. Did the OCD go away then resurfaced or just always kind of stayed? I have a feeling that if OCD occurs often enough in a child’s brain, it does begin to become a part of them. Like I said, I believe my son was passed PANDAS but the OCD was still there. It may be the same with IVIG. Even though IVIG made the PANDAS better, maybe the OCD just became too ingrained in him. Finally, there are supplements people with OCD can take to help with symptoms. They are listed on the OCD Foundation website. They are inositol, omega 3 fatty acids, fish oil, 5-HTP, valerian root, B vitamins. I’ve also come across someone whose sister has OCD and she said her sister takes SAM-E supplements and that helped. But I think those may be directed toward females. Not sure. Oh, and just a heads up…there’s a Toy Story 3 coming out soon too.

I didn't want to just give an opinion or guess on this one so I looked it up. One website said the child isn't contagious. (Just stating what I found, not saying I agree with that).But then another one said this... "From the insert (of FluMist): Due to the possible transmission of vaccine virus, vaccine recipients or their parents/guardians should be advised that vaccine recipients should avoid close contact (e.g., within the same household) with immunocompromised individuals for at least 21 days." So that leads me to believe that a child receiving FluMist may be contagious for us to 21 days. Going to school is the same things as living with someone. So, I'm going to give my opnion now... Now, realistically you cannot pull your children out of school for a month. I THINK I would continue to send my son to school. I suppose I can look into this futher and find out how long it takes for FluMist to actually "vaccinate" the child. The time leading up to it is probably when they are most contagious. Do the parents have to sign a waiver alowing the child to be vaccinated? Is it done during school hours or on school grounds after hours?