mama2alex

MomMD, Hope your son is doing better. I'm sure he'll bounce right back quicker than you think. Our son has been hospitalized twice for pneumonia and he recovered faster than we did! I was wondering, are you doing immunoloy testing on Spencer as well? An immunologist recently said to us that its not normal for any child in the U.S. in this day and age to have pneumonia, let alone need hospitalization. In other words, its a red flag. Our son has had pneumonia 6 times now and it was during the last pneumonia that he had his PANDAS exacerbation that led to his diagnosis (we think his first may have been when he was hospitalized 3 1/2 years ago).

My understanding from what I've read here is that all these kids have disregulated immune systems (not sure that is the right term). All are having autoimmune reactions, possibly to more than just strep A, many have allergies (which is an over-response), and now its starting to look like some or many have immune deficiencies (under-reacting). In our case, I think it's all three. He's had allergies for a long time, 6 pneumonias and a number of other infections, failed many of the Prevnar titers, and now PANDAS. For kids like mine who've been ill repeatedly with things like pneumonia, it's important to understand it and treat it, so they don't end up in the hospital repeatedly, have bad scarring of the lungs, or worse. Also, I'm beginning to wonder if the kids with immune deficiencies need more than one IVIG not only for the deficiency, but for the PANDAS. This is just speculation on my part. That said, we were recently told my a team of immunologists at UCLA that to be diagnosed with an immune deficiency and receive IVIG (probably monthly) we'd need to give him the Pneumovax. (One of them told me privately that his gut instict is that my son does have a Specific Antibody Deficiency to Strep Pneumoniae, but would not diagnose on history and existing labs.) We agonized over this decision for more than a week. I talked to everyone I could. Two moms said their PANDAS kids had the vaccine and did fine. One said her daughter received it after a full recovery with PEX and she had a relapse of PANDAS that was worse than the initial onset. They treated with PEX again and it didn't help her. She suffered for two more years before recovering when her period started. In the end, we decided not to mess with the vaccine and are doing IVIG with Dr. K on the 22nd/23rd. In the meantime, or perhaps after we do the initial IVIG, I'm going to try to find someone who will give me a diagnosis without the vaccine, but I think they are under pressure from the insurance companies to do the vaccine to "make sure." It is likely to be a long process for us to work through all this. The vaccine decision is an extremely difficult one, but I think there's no right answer for everyone. You have to use your own intuition about your child.

We're not working with Dr. Latimer, and our experiences have been different, but I can definitely sympathize with how you feel. Ever since this started for us in June I've felt like I'm swimming upstream. I'm working as hard and as fast as I can to help my son, but the progress has felt so SLOW. There is always some delay, and I feel like I'm always waiting for something (or someone). It's frustrating. I'm sure she will get back to you soon, but if I were you I'd continue to be a "squeaky wheel." In the meantime, have you tried to have a conversation of your own with your doctor? Maybe you can tell him/her that Dr. Latimer is planning to call soon, but is very busy and here is what she is going to tell you. Can we just move forward and Dr. Latimer will call soon to confirm what I'm saying.

I think different doctors will give different opinions on this. I'd say just to be on the safe side, give them as far apart as you can. I give my son some probiotics in the morning and one at night when he wakes up to go to the bathroom and come into our room. This way he's taking them about 3 hours after he eats and 5 hours after his antibiotic (which he takes only at night). He struggled with yeast for years before needing to be on antibiotics constantly, so I am especially vigilant.

Thanks for bumping this up! I just ordered ours - I hope they can get it to me in less than two weeks. We are scheduled for IVIG in Chicago on the 22nd and 23rd. Does it include any stickers? My son has an aversion to stickers, so if it does, I'd like to take them out before he looks at it.

I was browsing the book store the other day (and moving a few copies of Saving Sammy to the special needs kids/OCD section) and came across Healing and Preventing Autism by Jenny McCarthy and Dr. Jerry Kartzinel. I was surprised and pleased to find a page on PANDAS. There's nothing in that section that will be new to anyone here, but I think there is a lot in this book that might be helpful to some parents on this forum. They talk about IVIG, vaccines, supplements, yeast and probiotics, the immune system, etc - there seems to be a lot of overlap between autism and PANDAS in the underlying problems, therapies, symptoms, comorbidity, etc. Basically what they are talking about in this book is the DAN protocol, so for anyone who isn't familiar with this, it's worth reading. I haven't read the book cover to cover yet, but here's one very interesting thing I found in skimming it: On page 299 and 300 they show the "methylation tree" and the "autoimmune tree." Methylation refers to the body's ability to detoxify. The "tree" refers to family tree or family history of certain illnesses. On the "autoimmune tree" you have Lupus, M.S. IBD, Chrohn's, Addison's, Rheumatoid Arthritis, Celiac Disease, Diabetes, Graves Disease, thyroid disease, chronic fatigue, fibromyalgia, and leaky gut. On the "methylation tree" you have Alzheimer's, dementia, schizophrenia, bipolar, depression, alcoholism, suicide, depression, constipation, and autism/ADHD/ADD. Sound familiar to anyone? Anyway, I thought I'd mention it to you all in case anyone wants to do some reading on this area. On the back of the book it says "ADD, ADHD, learning problems and other disorders also respond to this protocol." PANDAS might fall under that "other disorders" category, at least for some kids.

I give my son Nystatin as well as Lacto-Tri Blend (we get it from our DAN doc) and Primal Defense (from Whole Foods). He is also on a low sugar diet (no sweets, juice, flavored yogurt, graham crackers, sugary cereal, dried fruit, etc). When we have a birthday celebration coming up, I bake him something using Xylosweet, which is a natural sweetener you can find in the Supplement section of Whole Foods. You can use it in a one to one ratio for sugar when you bake. We were doing most of this before PANDAS and constant antibiotics, but have since added the Primal Defense and an extra Lacto-Tri Blend at night. By the way, I'm not sure, but I think when you first start probiotics the behavior problems you see might be from yeast die-off. We've seen this when my son has cheated on his low-sugar diet. Once we get him back on track, things get worse before they get better.

Thanks to everyone for your feedback. I emailed Dr. K and he said it was our decision. Dr. Cunningham seemed to feel it was probably safe, but again, she couldn't really tell us. In the course of my discussions with other moms, I found out about a mom who's daughter had PEX and recovered, then a few months later was given Pneumovax for recurrent sinus infections. She had a severe PANDAS exacerbation (worse than the initial onset) and didn't recover for four years, even after a second round of PEX. She recovered when she got her first period. This was maybe eight years ago, but it tells me it can go either way. All my instincts are telling me not to do the Pneumovax, and my husband says he agrees. The risk seems too high. We're going to ask the immunologist if he can make a diagnosis based on the sinus x-ray, existing s. pneumo titers and history of pneumonia, ear infections and upper respiratory infections. If not, we might get one more opinion before heading to Chicago for IVIG. Here's what I'm wondering though: If he does have a Specific Antibody Deficiency to s. pneumoniae, can this be an indicator that (or cause of) he will not recover from PANDAS with one round of IVIG. It seems to me that a lot of parents whose kids are not fully recovering from one round of IVIG are going back and getting an immunology workup. That's why I'm hesitating to go ahead with IVIG until I get a definitive answer about his immune system.

You may already be aware of this, but please don't let them give her amalgam fillings - they are about 50% mercury. I had 11 of these until 6 years ago when I was diagnosed with mercury poisoning. I was not eating a lot of fish, so there's nowhere else it could have come from. The American Dental Association denies that the mercury from the fillings can get into the body, but don't believe it.

Has anyone here had their PANDAS child vaccinated with Pneumovax (not Prevnar) in order to diagnose Selective Antibody Deficiency? We saw an immunologist on Monday who wants us to do this, but we are hesitating. It vaccinates against 23 serotypes of streptococcus pneumoniae, so you can see why this might make us nervous. Our son has had pneumonia six times in five years, so we want to know if he has an immune deficiency, but don't want to take any unnecessary risks. Any input would be most appreciated.

I'm so sorry this is happening. My heart goes out to you. A few thoughts: 1. I'm wondering if you can get something protective to wear under your shirt to protect your arms. There are swim tops made from similar material to a wet suit that you can get at an athletic store. Maybe if you wore something thick enough it would protect you. If you can't get out to shop, try online at REI. 2. Have you called Dr. K? 3. Our psychiatrist gave us a prescription for Clonazepam before we started antibiotics. I haven't had to use it yet, but it is supposed to calm them down quite a bit. If you're like me, you probably hesitate on stuff like this, but if she's in danger of hurting herself or the two year old, something like this might be worth a try until things get better. Please keep us all posted on how you're doing!

Thanks to all for sharing your stories and ideas. Alex said he would eat something for lunch today, but if I don't see a change I'm going to stop in and ask the principal for her suggestions. It will also be a good excuse to nail down a date for our 504 plan meeting. Thanks again - you are all tremendously smart, helpful and supportive!

My son has stopped eating at school due to his fear of bees. He's afraid if he gets any food out, they will be attracted to him and sting him. The kids eat outdoors in a covered picnic area, so the bee problem is real and I guess several kids have been stung. At first I tried to talk to him about it, but of course this is pointless. Now I'm just trying to feed him a lot after school, but today he wasn't interested in eating until 4:30, even though he said he was hungry. We talked to the principal about PANDAS the night before school started, and emailed her twice about sitting down to map out a 504 plan (which she had suggested), but she is not responding. I've never had anything like a 504 plan for him, so I'm not sure how it works. I'm not sure what they can or are willing to do about this problem in particular, but I'm starting to get worried about it. He's lost a little weight already. Has anyone else here had a problem like this? Any advice on working with the principal/teacher on something like this? Thanks!

I just wanted to share what happened today. We stopped in to our after school care room (Alex will no longer go and I'm about to officially pull him out because I can't work right now anyway) and one of the ladies came up to me and told me she'd seen the segment on the Today show. I had sat down with them the first day of school and tried to explain what was going on, but she said now she really understood. She said she was praying for Alex. I broke down and cried right there. It meant so much to me that someone "got it." Increasing the awareness is important on so many levels. I am really thankful to Beth Maloney for writing this book, and to Sammy for having the courage to allow his story to be shared and going on national television.

I'm so sorry to hear you are going through this again. It must have been such a shock after 4 years! My son doesn't have tics, but there are some similarities with your son - feeling frightened, fear of bees, saying "I want to die." When he got strep (after the four PANDAS-free years), did anyone prescribe a full course of antibiotics to knock out the infection? You just mentioned IVIG, but no antibiotics. Is he on antibiotics now? I agree you should consult Dr. Beth Latimer in Maryland, because it's my understanding that she offers either IVIG or Plasma Exchange. Since you've already tried IVIG with no effect, it might make sense to try something else. I've read nothing but excellent feedback about her on this forum. We are seeing Dr. Kovacevic in Chicago in 2 weeks for IVIG, but if the IVIG isn't effective, our next stop is Dr. Latimer.

For my son it was two days before his 9th birthday party - 5 days before his actual birthday.

My book finally came about 2 hours ago. The first thing I noticed was the quote by Daniel Geller of Harvard Medical School at the top of the cover: "...may well hold the key to curing the lives of millions." MILLIONS! Quietly stated, but has huge implications. It sounds to me like he doesn't think this is so rare after all.

Addi, I'm sorry to hear that your son is so sick, but I'm glad you found this forum. There are a lot of great parents here who are eager to help. It sounds like you need to find a different doctor, or set of doctors. Go to the top of the PANDAS page here and click on "Helpful Threads for PANDAS" then scroll down to post #6, "Doctors we have seen who have helped with PANDAS." This is a good place to start. Also, I'm sure others here who live closer to you (we're in CA) can recommend doctors. The two I've heard the most about (all good!) are Dr. Latimer and Dr. Kovacevic. Another good resource is pandasnetwork.org. You can send them an email and someone will respond to help you. This is how I started out. When this started up again in June, what did his doctors prescribe? What antibiotics and how much?

I took ShaesMom's comment from the Saving Sammy thread, because I wanted to break off a bit and address this subject. It reminded me of something I've been wondering about ever since we first learned that PANDAS exists. Why is this illness so controversial/touchy/political? It's been tumbling around in my brain for weeks and when I saw how carefully the doctor on the Today show chose her words, I started to think more about it. She seemed to have two main messages: This is VERY NEW and doctors don't have all the answers. And this doesn't mean that every child with OCD, Tourettes, behavior problems or autism can just take antibiotics and be better tomorrow. What gives? I can't help wonder WHY she didn't say exactly what ShaesMom says above. That would have made sense within the context of the interview, but she seemed to have her own agenda. Is it the fact that the symptoms are psychiatric? I have wondered if the underlying problem and the reason many in the medical community have such a hard time accepting this is just plain prejudice. Or is it just too much of a paradigm shift for them to see kids with psychiatric symptoms as physically ill? Too anti-Freud? Is this somehow threatening someone's livelihood - maybe psychiatrists? I just don't get it. What do you all think is going on behind the scenes? I would love to hear other's opinions on this.

I thought this was pretty good for the Today show. This is not a particularly "serious" show, but it does reach a huge number of viewers. You have to remember that the purpose of the segment was to promote the book, and I think they did a good job of that. Showing the video clips of Sammy, having the words "PANDAS," "OCD," etc flash on the screen so people would remember, all that was good. I think anyone watching that segment, who's child has had a sudden onset of OCD or tics will probably pick up a copy of the book and read it - then they'll learn all the details and hopefully be motivated to seek out more information. This is real progress. I have to say I thought the doctor was not helpful. She obviously didn't know much about PANDAS, except that it's "controversial." It's too bad they didn't do a little more work and gotten someone like Dr. Swedo or Dr. Cunningham to respresent the medical point of view.

What a great idea! Maybe you could write it on a sticky note, so you're not acually writing in the book.

That's right. I saw someone else post that she'll be on between 8 and 9 am, but I'm not sure.

Thanks for the links Susan. I think this might be an important question for the following reason: If certain kids are dealing with yeast flare-ups and haven't had immune testing done, this could be a clue for the parents that they need to look into whether their child has an immune deficiency. We are already on this path, but I wish I had known this years ago. Perhaps we would have had a diagnosis and treatment before the whole thing got out of hand.

Thanks for the reminder! I need to set this up to record. I also pre-ordered the book and am looking forward to reading it.

My son has had yeast problems for years and now it looks like he might be diagnosed with an immune deficiency. I'm wondering if others are seeing a correlation. If so and you've had IVIG or PEX, did either of these eliminate the yeast problems? Just trying to connect the dots. Thanks!