momofgirls

Wendy That is all very interesting and I've read through it a few times to try and really grasp the concept! Let me make sure I understand...strep titers are not elevated because the protease enzyme destroys the antibodies tested? What do you think about viruses and flares? Are you thinking that once the strep is REALLY gone that viruses will not cause flares? Kim

Also just wanted to remind you that Cunningham's lab is close for the holidays anyway. You can't do the blood draw now. You know this is Pandas and that test will be available next year. I just hate for you to be struggling. It may take a bit for the steroids to help but the sooner the better. Good luck.

Angela Really a steroid burst, maybe a good 30 days might give you good relief. I would call Dr T (even page him!) And get him to call it in for you. You sound like you are really struggling. Advil might help in a pinch but you need something stronger.

Hi John, you are in great hands with Dr. K. I know how scary this all is as I am still fairly early in treatment for my daughter too. I have found a lot of hope in reading what many of the other parents have written on this forum. Many of those recovered do not post often anymore but check back in from time to time to give us still here much needed hope. Have you looked at pandasnetwork.net? Diana has been a great friend to me and has a son who is well after a pretty dramatic onset. You can look up amy s here on the forum or shaesmom...both of those children are recovered as well. It always helps to read the ups and downs others have written about so you know what to expect! I hope your son has a speedy recovery and think you should feel secure in his treatment with dr k. Kim

He he ha ha hooo lol. You guys can be funny! So its ok to give the kids a little at bedtime along with the motrin?

Hard to read but if I understand it correctly, Wendy, your thoughts we discussed earlier are correct. The toxins wipe out the immune system right?

Hi guys we see Dr B as well. He is a very good doctor and very much wants to help our kids. Definately worth a phone consult! Can someone explain the T cell testing that was done by dr b? He didn't do this particular test for my daughter but I would like to understand dr b's thoughts on this test.

I can add that when we did the steroid burst I actually her vocalizations I hadn't ever heard briefly for two evenings. Then things leved out and she became almost symptom free for several weeks. Now we are 3 weeks post ivig (small dose though with 5 more to follow monthly) and things have slowly worsened. I don't know if she is reacting to treatment of if it has failed. For us, turning back the pages occurred in the first 2 weeks post IVIG. It was like watching the last year on fast reverse. So intensity was about the same (maybe a little less -- or we were ready for it) but the episodes were really brief. We got through 70 weeks of symptoms in 2 weeks. Buster

I would love to know too! I can't tell the difference between what may be worsening of symptoms and "healing". It is so frustrating. Did you see Dr k? Is this turning of the pages something he described to you? When to expect after ivig? We don't see dr k but I have heard other parents describe this. I would really like to know what that means and how long does it last because right now I am thinking my daughters symptoms are just worsening. She had an ivig 3 weeks ago and this are worse now than prior to treatment. Agh!!!!!

That's awesome Buster. Iam totally cluesless as to how to get the attention of the NIH. I've written to Swedo a couple of times myself...not that I ever expected a response but thought it was worth a shot. I find it very disturbing that most doctors rule out PANDAS if titers are not elevated. I wrote pandas off for my daughter from the start because her strep tests were all normal. Then if a doctor is willing to try a course of abx and no miracle is seen, again they rule it out. I really think it was the steroid burst that made the difference for us. Somehow it would be nice if doctors knew enough to use that as a possible diagnostic tool. Buster, what about getting the help of someone like dr k or dr trifiletti and getting your letter in the right hands for review? Just a thought.

Hi Michael We didn't do the steroid burst nor abx untill after getting the Cunningham numbers so it couldn't have impacted results. Also I know some of the moms have said steroids worsens tourettes symptom but...Dr Latimer doesn't believe this to be true. Her words were "steroids are not a diagnostic tool for Tourettes or they would use it.". She prescribed them for Faith's son and they have been on the fence regarding pandas vs tourettes diagnosis. I don't know if faith ever actually tried them for her son I know she was hesitant. I hate speaking third hand for dr latimer but just wanted to share what I have heard. My daughters tics spiked some the first two days on steroids then went back down then improved. I can't say this would be true for everyone but am just telling you my experience. I think this can happen. After all you dealing with nerves and swelling. I'm not a doctor and have also read that on Dr K's website. I just hate for you to give up hope. These treatments are still somewhat experimental and I can't imagine many adults have pursued treatments like ivig so who knows. I am sure you will find the information you need and know it must be a tough decision. Good luck.

Hi michael My daughter's titers were normal but cam k was in pandas range at 137 which is just below ave for pandas. Dr cunningham told me that the titers normalize before the camk and that she was probably "trending down". She believed she fit pandas profile. We did a steroid burst and abx and saw great improvement! She had ivig a couple weeks ago and seems to have slipped some. We'll have to watch over time. Have you thought of trying a steroid burst? Oh and by the way who says after puberty its too late for ivig? Have they ever tried? Don't give up and good luck!

Yeah!!! So happy for you guys! We love hearing good stories! All the best to you guys.

I know that is frustrating but maybe you could arrange for either Dr K or Dr Cunningham to speak with your doctor. They can explain why the strep titers are often low. Also have him run tests for pneum strep titers to see if there is any sort of deficiency. That may help with insurance when building your case. Since you have a consult scheduled with Dr K I am sure he would be willing to consult Gupta. Also cunningham is willing to speak with doctors. Don't give up and good luck.

We did a 5 day steroid burst when we started the augmentin. The firt two nights I actually saw a spike in tics but were gone in the morning. Then by the 3rd dose I didn't see a spike nor improvement. Then there after things leveled off. It was until 3 wks of abx that I really saw dramatic improvement so I was puzzled about the effect of the steroids. Dr Latimer thought may it was just the initial shock of the steroids causing the spike and reccomends a month of steroids. We just finished the 5 day course and haven't tried longer term. Have you done steroids yet? Some parents (T.mom, Kayanne) have found that they are able to get back to 100% (or close) by adding steroids to the abs. I believe they did more than a short 5 day burst...more like 1 mo. of steroids. Of course I might be a little nervous about doing a bunch of steroids in the middle of flu season.

Elizabeth I am so happy to hear your son is doing so well! I think it is smart that you are boosting his immune system with the ivig and are supporting him with abx. We really need to do all we can for these kids. We are currently doing high dose augmentin and our immunologist is working to get our insurance to cover 6 months ivig as well. We have had very good results with the abx but I am hoping to see more improvement from ivig and hopefuly prevent a relapse by boosting her immune system. She weighs 40 llbs and is on 1200 mg augmentin. Our doc doesn't like long term abx but I would like to push for them for at least a year.

Ok thanks for the response guys. I'm always so cautious about being excited but I will gently jump for joy a little. I'd jump for joy anyway...if it comes back, there will be time to grieve later! This is where I'm at...a lot of times progress has been stolen back away, so my philosophy is to celebrate whenever I can, no matter how briefly!

Buster, wow you know your stuff. Say it again one more time...ivig will fix all this crap? My daughter has been on augmentin for 6 wks and made great improvement at the 3 wk mark. We have still some mild tics but overall she looks good. Now it seems as though the improvement has leveled and we are at as stand still. Do you think maybe without ivig that this is as good as it gets? Or do you think even if the strep is gone it just takes more time to heal? I should be jumping for joy with her progress but am scared it will all come back.

Thanks for the translation. It is very interesting and certainly points to an over reactive immune response.

Huh??? Sorry peglem but I don't understand what they are saying. I want to understand. Please translate if you can.

You girls have scared the crap out of me! Ha ha it is just all so overwhelming...strep antibodies attacking the brain, autoimmune, leaky gut. I think its all important stuff. Its just so tough to balance treatment. Right now my daughter needs an antibiotic and I'm going to give it to her. I've added the probiotics in there hoping it helps. Really though we've all got our hands full. I posted that original message just hoping tourettes moms would consider reading up on some of the strep studies. I've spoken with m cunningham and kovacevic and DAN doctors trying to piece things together. FOR US the antibiotics made the difference. I date my daughters illness starting a few years back to positive throat culture for strep. Otherwise she has been healthy. Did all the DAN stuff checking for yeast and leaky gut etc and really came up with nothing. Her cam k score was in the pandas range. This is where we are and if it helps someone else...great

My daughters weighs 40lbs and is taking 1200mg augmentin a day. That is a pretty high dose. Yes she still has pandas because it is an autoimmune disorder caused by strep. Many children outgrow the autoimmune rxn to strep and some stay on antibiotics prophylactically for years to prevent re infection. Some pursue treatments like ivig or plasma exchange to rid the body of the strep antibodies causing the damage. My daughters tics were pretty severe. Neck back arms and legs at one point. She also had vocal tics. We have npo history of TS in the family that I know of. I am not saying that strep is the cause for all kids tics but I had no idea she had strep. She wasn't sick in the traditional way. You need to do some research and maybe visit the pandas forum. A lot of good info on there. Best of luck to you.

Just want to add that not all PANDAS kids have high strep titers. All strep tests for my daughter were negative! She has been on antibiotics for 6 wks and is almost completely symptom free. There is not one diagnostic test for PANDAS. You can contact pandasnetwork or dr kovacevic in chicago. He answers emails. Dr madeleine cunningham at oklahoma univ is doing a study and may be very helpful as well. Don't give up. Leave no stone unturned. Good luck.

Faith My daughter has not been tic free in over a year. She did have good days but I have been cautiously optimistic. I haven't wanted to share this in case her was just wanning. She has been consistantly improving for the past 3 wks and now at 6 wks is almost symptom free. I am hardly seeing anything and I look closely for anythin! We are seeing an immunologist and pursuing IVIG because I fear she may relapse with illness however right now she has a cold and is still doing super. We started steroids (5 day course) at the same time as the antibiotics and at first her symptoms got a little worse but only briefly. I know the improvement is real because it has been saw tooth like and every few days I saw more improvement. She has not looked this good since this all started.

Please check into PANDAS. My daughters symptoms did not sound like classic pandas and all strep tests were negative! We thought she had TS and ocd for over a year. Recently we found an immunologist who thought it was pandas and said there is no way to know for sure unless we treat her with antibiotics. She has been on a high dose of augmentin for 6 wks and is almost symptom free her tics were pretty bad. Also be aware that it takes time to see a difference. I saw no improvement for 3 wks and then it was dramatic. Look up Dr Kovacevic in chicago. He answers emails. Please check it out.