mama2alex

I don't know, but I would love to see one. Thanks for posting this request.

Thanks everyone. He's much better tonight. Back to eating like a horse, but still sticking to softer foods. Fever resolved this morning after Tylenol and IV fluids. His headache is on and off, and mild. I will keep him on the Tylenol for a few days, or at least til he seems to have fully recovered. No Benedryl for us as he had an adverse reaction to it last week. The nurse said, and it sounds like from your experiences, that his reaction was pretty mild. The nurse this morning felt that he got dehydrated overnight because he basically slept through the whole infusion and obviously didn't drink anything during that time.

Hang in there. You will find the answers. I found this doctor on Beth Maloney's list: Dr. M. Lisa Huber, MD Peachtree Psychiatric Professionals 3500 Piedmont Rd NE # 775 Atlanta, GA 30305-1520 (404) 351-2008 Is she anywhere near you? Might be worth a try. Also, I agree a phone consult with Dr. Kovacevic in Chicago would be worth it.

Thanks! I'm so glad that's the case. He woke up this morning with a fever of 101.5, bad headache, body aches and vomiting. We were surprised by all of day two's problems after such an easy first day. They gave him tylenol, IV fluids and yes, a cold wash cloth on the forehead. He's feeling much better now, and we should be heading home soon. Maybe this weekend I'll sleep.

Just wanted to update everyone. Alex was diagnosed with Specific Antibody Deficiency by a doctor at Stanford a few weeks ago. He prescribed monthly IVIG for a 4 - 6 month trial, and he agreed to give an initial large dose (2g/kg) for PANDAS. After finally getting approval from our insurance co a few hours before our appointment, we came in yesterday afternoon. Things went very well - there were no issues. Today, our appointment was at 6pm and things didn't go as well as yesterday. When they tried to insert the IV, they blew a vein, which was very painful, and he got extremely upset. By this time it was almost his bedtime and he'd had 7 hours of sleep the night before (needs about 10). Four hours, five needle sticks, two blown veins and one tin of YuGiOh cards later, they got it in. They started the infusion around 11 and are going to let us spend the night. My main concern now is that he started to get congested tonight. I've had a cold for two weeks and thought I'd been able to keep it from him, but maybe not. Is this going to ruin the effect of the IVIG for us? He is one of those that gets worse with some viruses. Any advice on this would be appreciated. Jennifer

Vickie, I know it's frustrating. I was a PR person in my former life (pre-PANDAS) and you wouldn't believe how difficult it is to get the media to repeat your message. That's why people like me have jobs - it's full-time work. And with something like this, nobody knows all the answers and it's a very complicated subject, so it gets even harder to get the right messages out. Have patience and keep emailing. I think this is a very exciting time and a huge breakthrough has been made.

Folks, It truly doesn't matter how it gets out, who gets it out, what mistakes are made along the way (and there will be!), who profits, who gets on TV, who gets to feel good about themselves... All that matters is the word IS starting to get out and I think EVERYONE who's child has been diagnosed has worked in small or large way to help educate, publicize, etc. Let's just remember all that matters is that these kids get help and get better. I know there are real frustrations, but United we stand...

Thanks so much for your response! Anyone else? I can always ask the doctor or nurse, but I value your collective experiences at least as much.

This was broadcast on Nov. 13th and I did hear them ask Dr. Gupta to keep them posted. Maybe he needs to be alerted as to the diagnosis and the fact that Fox already aired a segment on PANDAS. Here's the link to his feedback form. I would keep emails positive since he said these things before she'd been diagnosed. This is our opportunity to educate a highly influential doctor. http://www.cnn.com/feedback/forms/form4.html?82

Thanks for posting this! Dr. Kobayashi, who was quoted in the aritcle, sat in on our appointment at UCLA and is a great guy. I believe he's treating a couple of PANDAS kids in Nebraska with IVIG (although I think he's technically treating them for immune deficiencies). One point the article brought up that has been bothering me lately is the insurance companies: "IVIG can cost tens of thousands of dollars a year per patient. Clotting proteins for hemophiliacs can cost $100,000 to $350,000 a year. And many of the uses of IVIG are not approved by the F.D.A. Insurers are becoming more reluctant to pay for such treatments..." It's fantastic that PANDAS is getting press and more and more kids are being diagnosed, but the research needs to catch up so that IVIG can be FDA approved for PANDAS asap. The more demand for IVIG for PANDAS, the more political it becomes. It would be much better to get it approved before there's a huge demand for it. Anyone here know the process for getting a treatment FDA approved??

Thanks for posting! I'm going to send this link to friends, family, school personnel and our pediatrician. Also, will email Fox News to thank them.

This is fantastic news! Thanks for the update. Keep us posted on her progress.

We gave my son Benedryl the other night and he slept like a baby. BUT, the next morning he was extremely agressive and angry. It wasn't exactly a rage, but more like he needed to hit anyone who came near him and was yelling a lot. It wore off in a couple of hours, and was clearly due to the Benedryl. So we were told that he'd be given Benedryl before IVIG to help prevent an allergic reaction. I want them to give him something, because he is very sensitive to lots of things, but not sure it should be Benedryl. Has anyone else seen a similar reaction and is there something you've used in place of Benedryl? Thanks!

Thanks! You guys are my lifeline.

Thanks NeverGiveUp - this is a good perspective. We did see an initial improvement on a fairly low dose of Azith, then nothing when we upped it either time (125mg to 250, then 250 to 375). Maybe we do need to try Augmentin. As for monthly dose, I forgot to ask! We are doing 2g/kg initially, and I'm glad you reminded me because I should here from them tomorrow and will ask about the monthly dose then.

The easy answer is that if you son gets another strep infection, that can "set the wheels of PANDAS" into motion all over again, and the benefit of IVIG will be undone. Is your doctor primarrily objecting to the dose of Azith. or the long term abs? The doctor isn't objecting - I was just nervous because he seemed SO cautious about antibiotics last time we saw him. He had to have another doctor agree to it. But it sounds from Wendy like it will be fine, at least for Azithromycin. I don't know whether he would agree to high dose Augmentin though, as he was very concerned about side effects with that one. I went in there wanting to try it, and he pretty much talked me out of it. Did you ever talk to Lewis about high dose Augmentin? I'm very confused about why we can't get him better with just antibiotics, but maybe he's had this going on for too long. We think his first severed exacerbation was 4 years ago, but it seems like this might have been going on with more subtle symptoms since he was a baby. Or maybe he does need the high dose Augmentin because the Azithromycin isn't strong enough. I've been sick with a sore throat and my son's symptoms have increased since that started, so I had a rapid strep test and culture on Saturday - both neg. My husband is getting checked today. We both have wondered if he's a carrier - I don't think my husband has ever been diagnosed with strep since I've known him. I've been diagnosed with strep twice since Alex was born and I had a VERY sore throat both times. Thanks for responding!

Thanks Wendy! THis puts my mind at ease.

I'm meeting with the new pediatrician again tomorrow and need some input. He let us try 375mg Azith per day for a month because we thought there might be more strep left (maybe in his gut or elsewhere). So we're almost done with the month and his symptoms have not improved at all. So tomorrow morning I will have to explain why I want Alex to remain on the antibiotics long-term. I'm okay with lowering the dose back to 250mg, but I'm not sure what he'll say. We may be doing IVIG as soon as next Tuesday and I don't want to risk having a break between courses of anitbiotics. Can anyone help me with an explanation of why we need to be on 250mg Azith DURING and AFTER IVIG? He's somewhat conservative about abx and I may need to convince him. I should have this all down by now, I know, but I've had a cold, my brain is fuzzy, I haven't had a full nights sleep in over a week and I'm just TIRED. Any help would be much appreciated!

One mild caution is that we had to remind our nurse to use Dextrose 5% for the flush since they don't usually use Gamunex 10%. Gamunex is incompatible with Saline flush. Buster Thanks for posting this question! We too are getting ready for IVIG - either next week (if insurance approves) or the week after. Thanks for all the information Buster! Any thoughts on Gamunex 10% vs. Gammaguard? We were told he'd be given Gamunex 10% "if it was available," otherwise it would be Gammaguard.

I'm so sorry - this must be so hard, especially when Pixie is starting to improve and you might be feeling like you can see the light at the end of the tunnel. This doesn't sound like "typical" behavior to me - especially the dramatic changes that have a definite pattern to them. I think it's a huge red flag. I'll say what I said to SFMom when she became concerned about her younger son. Jump on it and be aggressive. You have so much knowledge now that you can use to nip this in the bud. You don't have to go through years of wondering, things getting worse, alphabet soup diagnoses, only to find out it was strep. I'm sure you're exhausted and don't want to deal with any more, but you know what tests to run and how to help her. You'll get through this. As for getting her bottom cultured, I can't believe they refused! Could you go to an after-hours clinic on the weekend and talk to a doctor? Anyone else have any ideas about how to get this done? Also, maybe a phone consult with Dr. K at some point?

THANK YOU!

I'm so sorry your family has gone through this! But I'm glad you posted here - you will find a lot of information and support. Am I reading this correctly - several doctor's diagnosed PANDAS, but none ever prescribed antibiotics? Did they check titers, swab his throat or run immunology blood work? Unless I'm misreading your post, it sounds like you found doctors who believe in PANDAS and believe your son has it, but have no idea how to properly treat it. I agree with others here - you should either consult with Dr. Elizabeth Latimer or Dr. Kovacevic in Chicago. Both will do phone consults and I believe Dr. Kovacevic is within driving distance for you. In the meantime, read as many old posts as you can on this forum and you will start to get a clearer picture of what needs to be done. Also, post specific questions that come up and someone WILL answer. Here is their contact info: Dr. Miroslav Kovacevic Chicago, Illinois www.webpediatrics.com (630) 986-1010 Dr. M. Elizabeth Lattimer, MD 6420 Rockledge Drive Suite 4920 Bethesda, MD 20817 (301) 530-9200

This is fantastic fantastic news!! I'm so happy for you. Keep us posted.

I just posted about this separately, then saw this thread. Hopefully, he/she can be removed as a member. This is not a good place to advertise medications, and it just felt like a violation. It made me extremely aware that this forum is not private and that anyone can read it.

I woke up this morning to a personal message from Lisyka, which was an advertisement for medication. This person has 0 posts and IMO, has no business being a member of this forum.