thereishope

He's obsessing about Toy Story because they are rereleasing it in a couple weeks in 3D and commercials are all over the place. So, at least there's is a reason for it. I have so much to post about OCD and PANDAS, I will write it this afternoon when kids are in school!

Just a reminder that "Saving Sammy" author will be on the Today Show on Thursday, Sept 24. Not sure what exact time they'll show the segment. Anyone live close enough to the studios to stand there with a PANDAS Network (www.pandasnetwork.org)sign to hold up?! Maybe Al will put you on tv!

Luckily, overall, my son is doing well now and I only use the Ibruprofen on days when he seems to have a cold, headache, or allergies and things start to pop up.I know there's no info backing me up on this, I'm just scared that the benefits will wear off if he uses it too often. He's only 5. I have many years I need to cover. I do hate when he says he has a headache. I don't know if he actually knows what a headache is, but I also freak out that inflammation is going on and that's what's causing the discomfort.

It's okay if family members get the shot. It's not a live vaccine.

They give regular seasonal flu mist at your school? I freaked out when I realized the 4 year old kindergarteners had to get the remainder of their vaccines by Sept 15. That means my son's class had an influx of kids getting their shots probably along with Flu Mist. When I found out the kids at the bus stop just got FluMist, I swear I felt like they had the plague. I wanted to grab my kids and run the other way and . But I know I can't avoid it. You don't know which kids enter the classroom right after getting it.

There's so many what if's when dealing with this. I wonder how many times I should have taken my kids to the doctor when they had a "cold" that didn't go away or a cough. I'd look in their throats and say, "It's not red. there's no streaks, rash etc.". It never occurred to me that they could have strep. Now I wonder how many times they might have had it and I let it go. Perhaps my son had it many times and the last time in Sept 08 was the last straw that broke the camel's back ad PANDAS finally surfaced full force. I know there is no way of ever knowing, but when those thoughts enter your mind they are hard to get out. I don't think our kids will resent us when for possibly passing this disorder onto them. I think, as parents, we worry about this but I don't think it will happen. Like someone else has said, if I have to look at the positives of all this, I have a new outlook when it comes to my kids. My new motto to myslef is to "pick your battles". Why fight over trivial things. Why punish for silly things. Life is just too short.

I understand where you're coming from. My 8 year old would not be willing to take pills either. I have bottles of liquid for everything for my kids. If you get liquid, try to stick with dye free. Sometimes food dye can cause behavior issues in kids as well.Oh, and I was wrong, I give my 5 year old dye free Motrin (not Advil).

I just read my Advil bottle. It also states something about increasing the chance of stomach bleeding if taken w/ a steroid.

It was on the printout w/ the prednisone. The pharmacist told us as well when I asked. Hi Vickie-- Just wondering where you got the impression that you could not use ibuprofen when taking steroids? thanks--

Here's a link to an older thread about what people have in their "bag of tricks". Supplements are included. http://www.latitudes.org/forums/index.php?...9&hl=tricks

It's good to know I'm not the only one who had those thoughts while in the middle of the battle. Like you, I would NEVER act on them, but I was right there w/ you. I also had many bargaining sessions with God where I often offered letting him shorten my life if he'd make the life of my son easier.

I give dye free liquid children's Advil. Personally, if his behaviors are still disruptive or something that is really bad, I'd give the Advil even w/ the antibiotic. I would think they can see the swelling on an MRI, but I'm not really sure. Maybe someone else will have insight on that.

Well, I'm anti live vaccine now. Even though a few have told me they get the flu shot every year, even w/ PANDAS, I think I am skipping that too. Now, in a different forum, someone asked the same question then contacted Dr Cunningham and asked her. Dr Cunningham didn't say anything negative about either. I would still err on the side of caution and opt for the shot over mist if you really want to vaccinate.

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I live in Cincy and have yet to find the right doctor here. For some reason Columbus is ringing a bell in my head. I don't have time now, but I try to research later and see what I come up with.

Ibruprofen is NSAID. Non steroidal anti-inflammtaory. So, many (including myself) have found that when they give their child Ibruporfen it takes down some of the swelling on the basal ganglia and relieves some of the PANDAS symptoms. Some are giving it on a daily basis , some are giving it when they see a flare up in symptoms. It is safe to give if you are NOT giving a steroid. Streoids and IB cannot be combined.

That's the thing, I don't know what to do with this information. It's a bad feeling to think you may have a piece to the puzzle but there's nothing you can really do with it. You can at least "warn" and inform those on that side of the family. But as I learned when I told family about being a cystic fibrosis carrier, they get very defensive. People really protect their family trees. I thought I was being helpful, and to my suprise I got a lot of bad responses back.

I think with me, somewhere in my head and heart I knew something was going to happen with one of my children. That instinct was always there. When PANDAS entered my world, it was as if the waiting had stopped and I knew what I was destined to face. I do not regret having my kids. Never. It's the same when you go thorugh testing when you're pregnant for Down's and such. I got the testing done, not because I would terminate the pregnancy if positive, but so we could be prepared. I also found out that way that I was a carrier for cystic fibrosis. Luckily, my husband is not. But, that is good info to pass onto my kids as they enter adulthood. I definitely plan on telling all my kids about PANDAS. They need to know. Right now they're young, so I will wait until they are older. I lalso plan on sharing all my journal entries with my son when he's ready. I want him to realize and know what a strong person he is. If he can defeat this, he can do anything. As for my other kids, they have had strep w/o any PANDAS symptoms surfacing,. I always assumed that meant no PANDAS. But now I also see maybe I just caught there's super fast before damage could be done. Like my PANDAS son, they did not have symptoms of strep. I brought them because my PANDAS son tested + on the rapid. Something for me to think about.

Where in Ohio are you? Ohio is a hard state to find doctors. The Dr Latimer suggestion is good, but there is a hefty fee for a phone consult as well. I think in a different thread someone cited $400. It never hurts to call, tell them what's going on, and see what they have to say. Maybe they'll do a payment plan. Did they run a culture or just a rapid? Can you think of anthing else that can cause a setback? A cold, allergies, any other virus?

This really isn't a question or anything, but more that I just need to post this somewhere. I've suspected that PANDAS was somewhere from my family tree, not my husband's. On my side, there is a long history of neurobiologic problems, autoimmune problems, the list goes on and on. My Maternal Grandmother almost died from strep as a child. A time when antibiotics for it were not yet discovered. Then, yesterday I received an email from my Maternal Aunt that pretty much gave me the confirmation I needed to realize the PANDAS "gene" came from me. My cousin has BDD (Body Dysmorphic Disorder). This is an OCD spectrum disorder. He is in his 20's now but this surfaced I believe in junior high. It is dibilitating for him. He's even gone through brain surgery to try to find relief. Well, I finally got the nerve to ask my aunt if she ever thought, in hindsight, that he could have had undiagnosed PANDAS. She responded by saying that her kids were never sick. Only colds. But now she realizes through me that people don't have to have symptoms to have strep and she wonders if he ever did have strep as a child. Then mid-email, she remembers that his sibling (my other cousin) once had a cold and went the the doctor for it. They ran a culture for strep and it came back positive. Over the next 2 months, she kept getting positives and the doctor deemed she was a strep carrier and no longer to be on antibiotics. So, she continued to walk around being a strep carrier. When I read that, shivers went down my back. My aunt said she thinks it might be best not to share that with my cousin with BDD. I understand why. He's been through such a bad time with this. To tell him thatit possibly could have been haulted could send one over the edge.Perhaps when the time is right, she will share. Anwyay, my cousin's BDD is stable right now. My aunt said that the brain isn't fully developed until 25 years old so that is in his favor. So, in my heart that was the final confirmation I needed to realize that I was the one who passed PANDAS onto my son. In one way, I'm not worked up about it. But I also hate that technically I did this to him. My aunt has said in the past that her son was just born too soon. Meaning in a time prior to all these new discoveries of the brain. I guess I need to remain thankful that my son was born in a time while these discoveries are being made and will continue to be made. I have so much hope for him. I wonder if some day they will find a marker or something that will tell a parent if a child is a "carrier" for PANDAS. I believe it is genetic. I know that will not happen in this generation. But hopefully someday.

I'm not original 20. I just first contacted her a couple months ago. I originally contacted the site just so my son could be "accounted for". I am now trying to contact various outlets (ie, OC Foundation) to let me know about the website, get them to look at it, and keep it on file for reference. If more notable organizations ackowledge the website, our children would get better care since things like propholactic antibiotics and IVIG are talked about on it. I have gotten only positive messages sent back to me from different place commented how they like the site, believe it is a great source of information, and will utilize it. I also try to join other forums that a possible PANDAS parent might vist or stumble on and give a very brief explanation of it and put myself out there as a contact. I then try to inform them about pandas network, this forum, and a facebook one I visit a lot.There are still parents out there that feel they are alone and have never even spoken to another PANDAS parent. When they contact you the first time, it's as though you've just thrown them a life perserver. They are no longer alone. I think, but not sure, that pandas network, will take your info and keep it on file. I think that is very important so bigger numbers are reflected. The bigger the numbers, the more attention a disorder will get. It also helps for seeing patterns, overlapping symptoms, etc. As for cases on the website, not everyone that contacts her is reflected directly on the website. But like someone else said, they are documented offline.

My defintion of healed is my son doesn't have odd behaviors anymore. Behaviors that did not exist prior to Sept 26, 2008. I don't know what the status of his brain is or anything. I just know what I see and what I feel. I have a feeling that even once the inflamation goes down on the basal ganglia, there has been damage done and that needs to heal. I mean, think about it as though the basal ganglia has been bruised. My son also had a strep after his t and a surgery. Do you think that when they have their surgery, hidden strep is exposed and it then multiplies? But what would confuse me about that is he was 100% back to being himself on the surgery date. I don't know anything medical in regards to the antibodies, but I thought that once the infection was cleared, "normal" immune systems stop producing those antibodies and in time, the number of them reduce becasue they are not needed. That's also why steroids might be good when given rather immediate after infection. It will hinder the immune system and stop the immune system from producing more antibodies. When my son is doing better, I say he is in remission. Personally, and some may disagree with me on this one, I don't think it can be cured. Cured is a strong word. If you are cured, you don't have a need to prevent strep infections.

If it helps you feel better, my son's third episode was calmer than his second. So, your child may not continue to have worse episodes each time. His second was very scary. This last time was the longest recovery....5 months. He's now 95-98% himself. The only thing keeping me from that 100% is he tends to cry easier than one would expect when his brother makes him mad. He wears his heart on his sleeve. Something I don't remembr him doing pre-PANDAS. I agree, if he ever gets sick again, I am going to beg for prednisone right away. If I don't get it, I will religiously give Ibruprofen for a couple weeks to try to inflamation as low as I can. -1st episode it took about a month. He was approaching 100% when he got strep again. -2nd episode it took 2 1/2 months. Went back to 100%. He got a streroid w/ this episode. -3rd episode it took 5 months until I said he was himself & got OCD under control. No steroid.Today, he is 6 months since his last + strep. He is 95-98% better. I see a pattern with our time lines. Almost an eerie coincidence. Also, note I think we are both the ones who saw need for interventions like ERP. We should find out others timelines for who have healed naturally in the past.

I believe I read that someone else went to Lab Corp, showed them the paperwork that came w/ the kit, and they ran the blood draw from that.

It's your child and you're taking care of them just as you should. Never think it's silly.