thereishope

This is the address for donations OU Pandas Foundation, P.O. Box 26901, Library - 162, Oklahoma City, OK 73126

This article led to the question, how many PANDAS/PITAND kids are gluten free and have you noticed any benefits from being gluten free. Gluten Sensitivity and the Impact on the Brain http://www.huffingtonpost.com/dr-david-perlmutter-md/gluten-impacts-the-brain_b_785901.html

I don't think a 5 day course of steroids would really mess anything up. I don't even know if it would weaken the immune system with only 5 days. A month of steroids with a taper is a bigger deal, in my opinion. I have read on here, mainly from Chemar, how her husband (who has TS) did not react well to steroids. The steroid he was given was not for the same reason as on the PANDAS forum...I don't recall the reason. Because of that, I can totally understand be nervous and cautious with steroids when you are unsure of the diagnosis. Like I asked earlier in this thread, have you tried Ibuprofen at all and what results, if any, have you seen from that? I don't know if it has been mentioned on this thread yet, but for some kids, even if they have a positive result, it coupld be temporary. That's something to weigh as well. Also, there's no cut off where a PANDAS kid becomes a lost cause. Even at 5 years past onset, I'd fight to help. You're doing the right thing asking these questions. You need to feel comfortable with what ever decision you make. This is what worries me the most, my child has had symptoms for 5 yrs. I wonder if a burst can even do anything at this point? Could ivig? I understand that it is worth a try however I fear the outcome as most of us do. Many have told me it is worth a try, but could we possibly make some of our kids worse by messing with them so much? It seems most success stories come from kids who have had symptoms for months, possibly a few years, but 5?

In some kids, a 5 day helps. It's different for each child. It may be a matter of timing in relation to onset, severity, etc. A 5 day burst helped my son.

Always hope! Perhaps she needed the combo of meds and iVIG. Maybe it was timing of it. God's looking out for your daughter and family. In my heart, I know things will get better, Peg. I can sense it. It's just a matter of when and how. Hoping for sooner than later! Please keep us updated.

In his second exacerbation, he was bad. He also wasn't following the timeline that he did during exacerbation #1 in terms of seeing some kind of improvement w/in 3 days of starting antibiotics. It was during that one that he wasn't eating, raging, threatening to do self harm, and more. My son started the steroid burst, I think on day 5 of antibiotics for an active, documented strep infection. For him, I didn't see my son miraculously come back as some have stated, but instead it helped stopped him from spiralling down and I could see him start to improve. For him, the improvements were not temporary. How long has it been since his last infection and his last major setback from something other than a strep infection? Like in exacerbation #3, allergies wiped away all improvements my son had made and were back to square one. Also, it was in that one that he ended up having residual OCD. Do you think that 85% is still from him being in an exacerbation or do you feel it's over and there's stuff sticking around? I can't explain how to know that, I just knew. When my son had residual problems, I could just tell the worse from the exacerbation was over but we were stuck. Once we started to seek out outside help through a therapist and start to tackle the residual problems, he started to shed the remaining OCD. In the previous exacerbations, the OCD just went away on its own. In that one, some went away, others didn't. As for reacting to exposure...I think that's a process. I don't know how my son reacted to exposure alone. Never knew anyone who had strep when he didn't. However, over time, I saw him react less and less to viruses, allergies, etc. Now he doesn't react to non-strep triggers. Ibuprofen helped with non-strep trigegrs.

First, I want you to know you're not alone in the paranoia. Like you, I have taken my kids for strep tests even if they are only exposed in the class room. Like you, I insist on a culture if rapid is negative. All 3 of my kids (only one is PANDAS) do not show symptoms of strep. It's scary to think they could be a ticking bomb for my PANDAS son. Where we vary is that I have not done titers for my kids and I have not done the Cunningham test. They are not showing any possible PANDAS symptoms and my PANDAS son is doing well. Did Dr L say what she thinks you should do if the Cunningham results come back in the PANDAS range? I thought it was brainstormed on here that a child could possibly have higher Cunningham numbers without actually, technically being PANDAS if they are not showing PANDAS symptoms. Anyone remember that? As Buster listed in his PANDAS Fact Sheet... So for all one knows, one of your kids that aren't showing PANDAS symptoms, but may have numbers in the PANDAS range, could have an intact BBB w/o a breach. But, like you said, where are the higher titers coming from? Not sure the timeline (hopefully someone else will chime in about the ideal), you'll need to have titers retested and see if they lowered with surgery and the Augmentin. Hopefully they will and you will no longer have to worry as much. You'll still worry, but hopefully be able to calm down a little. Boy,my response was a ramble. Sorry about that!

Has your child ever had a steroid for anything else...croup, poison ivy? How does your child react to Ibuprofen? Ultimately, it is your child and if you don't feel comfortable doing a steroid burst, then don't. As for antibiotics, which ones have you tried?

Just antibiotics, a 5 day steroid burst in exacerbation #2 and a whole lot of time, creativity and patience.

Wow. Okay, take this as a positive.....perhaps now that you know this, you will see more progress if your hubby fully gets on board. As for giving in to the 5's and such....if your hubby does that and you're not, your son's brain is getting mixed messages. With OCD, it has to be consistent when trying to overcome it. Ugh. I can feel your frustration!

Well, my son had his tonsils removed and I don't regret it. Now, from my own personal experience, when I was a child I got tonsilitis (possible undiagnosed strep) A LOT. The fad back then (1980's) was to not remove tonsils because they were an important part of the immune system. So, I kept my tonsils. As an adult, I still have issues with them. They are large, I get food stuck in them, etc. I wish I had them out as a child.

Glad to hear you are recovering well! And glad to hear you are seeing progress with your son! I know you said slight progress, but it's progress and that's great!How are your other kids?

Here's the link Antibodies to Strep Throat Bacteria Linked to Obsessive Compulsive Disorder... http://www.mailman.columbia.edu/news/antibodies-strep-throat-bacteria-linked-obsessive-compulsive-disorder-mice Also, here is the NIMH director's blog post, if you haven't read it yet http://www.nimh.nih.gov/about/director/2010/microbes-and-mental-illness.shtml?WT.mc_id=rss

As for the continued improvement now that she's off keflex...absolutely that can happen!!!! It may be that the keflex finally erradicated the infection. Once the infection is gone, the antibodies should begin to lower. At that point you see improvement.Some PANDAS kids on here are relient on antibiotics to maintain the improvements, but not all. The fact that you continue to see good things is great! You see her healing!!Now, you have to try to keep her immune system calm. Make sure no one else in the house has strep, keep any allergies in check, I would suggest no flu shot or similar. Give her immune system a chance to calm down. Did she test + for strep throat? If so, do a follow up 3 weeks after Nov 6. If she is already on a proph antibiotic, you do run a chance of a false negative, but personally, I would still check.

Stephanie2 has written some good posts on OLE. You can go to her profile and look up the posts she has begun and read up on it. As for the paranoia...sorry, no advice. I'm still paranoid! What I remind myself is that my son will not always behave and be perfect. He will have quirks and occassional odd behaviors. He's a kid. He's now 7 years old. If he behaved perfect all the time, then that should also be something one should be concerned about. I admit, I "test" him sometimes. I change up the bedtime routine, I say something that would have set him off before just to see how he reacts and make sure all is still well. I think that helps me keep my own sanity. I messaged you my son's timeline. Hope it helps.

If enough people haven't told you yet...you are an awesome Mom! Good luck with the upcoming IVIG.

re:rapid strep test. You buy them online. This website was once posted by a trusted parent. http://www.docsavings.com/Merchant2/merchant.mvc?Screen=PROD&Product_Code=IST501&Category_Code=rpd&Product_Count=0 Also, any and all paranoia on your part is expected. Don't you feel a heck of a lot better you took your son in though? As for you daughter, even if she's been drama free for two weeks, you can still see a blip here and there as she continues to recover. It's when those blips worsen, spiral and don't correct themself n a couple days that the red flag goes up. Life becomes a totally different ball game now. You question what is "just your child" what is a possible exacerbation simmering, etc. But you know what, if she starts with a full blown exacerbation again, you'll probably kow it. you may think you forgot and are unsure, but you will just know. In an instant, I'd pick up the phone, call my hubby at work, and just start crying "It's back". You can also give your daughter Omega 3's. That's good for the brain.

I'm glad to hear you're seeing improvement! May God continue to bless your son and whole family.

I can feel how torn you must be with your ped being your SIL. My BIL is a doctor and I have heard the whole C Diff problem a few times from him and the number of kids who had to do surgery on and remove something (can't remember what) because of overuse of antibiotics. But, even he understood when I made the RF comparison. Now, I just don't bring up the subject of antibiotics or vaccines (another hot topic between us). But, unlike you, he doesn't live immediately by me and he is not my children's doctor. As for your son, I say get him tested. If you need to, go to urgent care and tell your SIL (if she finds out) that you didn't want to bother her being that it was the week of Thanksgiving. You need to get the ENTIRE family checked for strep. This is one way to help your daughter strep free. Now, does your SIL agree your child is PANDAS? This can change everything is she doesn't. Everyone's suggestions will also vary depedning on if she agrees it is PANDAS.

If you don't mind me saying this. My son does not need antibiotics in between exacerbations to maintain remission. Exacerbation #1...realized strep was the culprit 2 weeks post onset. Exacerbation #2 and #3 was caught in ONE DAY of onset. Those exacerbations were bad. #2 involved wanting self harm, severe OCD, eating problems, and more. Exacerbation #3 involved a longer recovery and residual OCD. At that time he was not on proph antibiotics because I could not find any doctor to give them in my city....trust me I tried and I fought for it. In my opinion, if your child can take antibiotics without yeast issues and such, then I would suggest trying all you can to reduce your chance at getting strep with a proph antibiotic. Relying on catching it fast, may help but does not necessarily shorten recovery or make the symptoms less severe. If you absolutely cannot get proph antibiotics, then so be it, but really try to get them and fight for them. Learn from my experience. Like I said, even if it's just during the school year or even just pen vk...try to reduce your chances. Once your child has strep, you can't go back and change things.

I don't have time read all previous posts, but if you feel intimidated at the appts because of it being your SIL, have you considered swicthing doctors? Yes, she'd be insulted a bit, but she'd eventually get over it. Since the immunizations are done, don't beat yourself over it. Move on. As for proph antibiotics, there's a few ways you can reopen the subject with her. 1.Remind her the worst your child was. 2.Explain to her with each exacerbation, your child can worsen. Symptoms change, severity changes, length of recovery changes. I will message you a summary of my son's symptoms with each exacerbation if you want to present it with her as an example of how it can worsen and morph. 3.Make a compromise for now. Antibiotics during the school year when your child is most exposed. At summer break, you can reapproach the topic. 4.Ask her if she prescribes proph for Rheumatic Fever. Compare PANDAS to RF of the brain. 5.Ask if she will move in with you and help take care of your family and child if your child gets sick again:) 6.Ask for proph until you see more recovery so you can give her brain a chance to heal. Use the words "Her brain needs a chance to heal". 7.If you want to stay local and not see a specialist, go to an ENT, immunologist, etc. They can prescibe antibiotic as well. 8. Tell her you will give your child PROBIOTICS as well to help protect the gut. Sound educated and she will be more open. Good luck!

Now, I see what your hubby did for you! I need to read all posts before I post! I hope the break helped.

First, I'm sorry. Second, I felt the way you are. The first two exacerbations, I was strong, I was even proud of myself. I had patience, was creative in helping him, etc. Then I had a break between exacerbation #2 and #3. You'd think that would help, it was the opposite. I was no longer patient, snapping, crying, emotional basket case. Ariel....you thought you were going to have a longer break than you did. You're wiped out and don't even know just how bad. Do what you need to do. Turn the tv on for them, try to get them to bed early by pushing all routines forward an hour. But don't beat yourself up. This takes so much physically and mentally. You are doing a great job!

See, instead of googling what website she found it on, I googled my son's name to see if anything cool came up like that....nope.

Wow! What website was that on?