LaraM

My son has a primary immune deficiency, Celiacs disease, PANDAS, and lots of environmental/food allergies. He received his first dose of IVIG on Wednesday--only 10 grams for his weight of 56 pounds. This is much lower than the typical PANDAS dose, but is the dose for a primary immune deficiency. We saw amazing things on Wed., Thurs. and 1/2 of Friday (more articulate, not easily frustrated). Friday afternoon and today, he is struggling again. He bit his brother, is obsessing with our dog again, and is just generally showing a mild PANDAS exacerbation. Does this occur with IVIG (low dose)? Is it a temporary side effect or could it be something else? I am just trying to figure out if this is normal, if the PANDAS flare could be allergy related (we have seen this in the past) or what?? Thanks for your input!!

I just wanted to also suggest our Doc in Melbourne FL has a second location in Irvine, CA. I don't know if that is close enough, but if you want someone to physically see you child, it would be worth the drive. I don't know how often his is in Irvine, but maybe it is worth looking into. He is an awesome PANDAS doc...also a DAN doc. My boys have PANDAS, and I know he has treated many others with it. www.rossignolmedicalcenter.com

I read an awesome book called "The Minds of Boys, Saving Our Sons from Falling Behind in School and Life" by Michael Gurian. It really has impacted the way I work with my ds7 and ds6. Your son is totally doing what comes natural to boys--immersing themselves in one topic (reading) for long periods of time. The author even did brain research and showed images of the male brain at rest vs. the female brain at rest (way less activity in the male brain at rest, whereas the female brain was still firing away because as it was explained in the book--girls are more apt to multi-task). The big things I came away from regarding that book, most "traditional learning" as we see in schools today is set up for the female brain...taking several subjects in the course of a day (the multi-tasking element), whereas boys like to focus in-depth on one thing to completion. The other thing, activity is key for boys. They need to move around A LOT and exercise prior to learning and throughout the day. They also need periods of downtime. I honestly know I am not doing it justice, but I would say reading it will make you feel better about your child's learning style.

Good point...actually Dr. Murphy was the first to suggest that he had an immune deficiency. We followed up with a local immunologist (Melbourne, FL). I am going to see if I can get in to Dr. Murphy for the referral...he has definitely had non-strep triggers and his baseline has plummeted since Dr. Murphy had his levels checked a year ago. Thanks...I really appreciate your input so much!!!

I was stonewalled with our insurance company. My son's pediatrician isn't willing to order IVIG based on the PANDAS doc's recommendation because he is a DAN doctor and she fundamentally disagrees with his position on immunizations (that is a whole separate issue--sigh). At any rate, she said she's willing to order IVIG if "someone smarter than her" can recommend it...ds was seeing Dr. Murphy in one of her studies. The pediatrician said if Dr. Murphy recommended it, she'd do it. I don't think Dr. Murphy will order it--I can check into it, but I think she just sticks with abx. I tried to contact Dr. Latimer, but she isn't accepting patients out of state. At any rate, our ped. recommended going to the immunologist...that really got us nowhere today. DS hasn't had those vaccines because last year when he was due to receive them, he was in the beginning stages of his first major exacerbation and I said we couldn't do them until he was a little more functional (at that time, he was rolling around on the floor, ticcing, really OCD, 30-45 min. periods of going completely catatonic). I didn't know much about immunizations etc., but in hindsight, I am so thankful he didn't get those immunizations because it could have made a terrible exacerbation a catastrophic one. Our insurance is crappy and very localized to the area we live in...no pandas docs on the plan etc. I have contacted them, and got nowhere.

I have heard from Dr. Murphy and my son's current PANDAS doc that it is likely a PANDAS exacerbation will occur when we get our child immunized. His current PANDAS doctor even said if it was my kid, I wouldn't immunize. On top of that, he wasn't sure if he could pull him out if/when he did exacerbate (his last exacerbation was awful--I know you guys get that totally). We are trying to get IVIG covered through our ds's immunologist, but he wants him immunized for diptheria, pneumococcal, and tetanus so that when he rechecks his titers, he can determine if he has a transient form of hypogammaglobulinemia or a common form? Sorry if this isn't quite right, but I was trying to listen to the doc while placating my kids arguing over an I-Pod At any rate, he won't order the IVIG if it is a transient form, but he can't determine it unless he is immunized (to see how his body reacts to the immunization). He said if there was research to prove that immunizations would throw a child into a PANDAS exacerbation, he'd love to see it and would forgo the required immunizations in order to approve IVIG. Is there any research like that that exists??? Is this just anecdotal evidence by the doctors that actually treat PANDAS? I am not willing to immunize because I am so utterly terrified of what would happen as a result and refuse to go there. I tried to explain to him that I though there wouldn't be much out there as PANDAS is new as far as research goes, but that's not going to get us what we want/need. Suggestions? Thanks for your help!!!

My ds6 and ds7's pediatrician (no longer their pediatrician): I've had two other patients with severe tics that completely went away with antibiotics, but I think it was just coincidental.

Oh yes, I believe I do have PANDAS and did as a child. My husband is convinced he also had PANDAS as well. What is very timely about all of this is that my husband and I keep testing with elevated titers (mine in the upper 300's, his in the upper 200's). I have been severely depressed, increasingly OCD, can't sleep, moody, even urinating frequently (4-5 x's per night )!! I had always attributed my depression etc. (except for the urination at night) to the stress from having PANDAS kids and my father passing away. (Side note--My Dad had mild Alzheimers in September 09. He tested positive for strep throat and completely tanked. He went from taking care of himself, carrying on a conversation and forgetting one to two words, to no intelligible speech, incontinence, and losing the ability to care for himself completely. By December 09, he had to be put in a nursing home. This was the same month my youngest had his first major PANDAS exacerbation. In January 2010, my father passed out, broke his neck and ended up in a hospice facility. He passed away later the month. I am mentioning all of this because after DS6 developed PANDAS, I started paying attention to strep. Could my Dad's sharp decline be a result of the strep infection in September 09???). During our last phone consult with our son's PANDAS doc, I asked him if we could go ahead and get treated as if we are carriers. He put us on two antibiotics. We're still taking them, but I have to tell you I feel like a fog has lifted with me. I don't feel so depressed, I don't have to do any OCD things, I am less moody. I have even been sleeping!! Please understand, the only way I would get any sleep for months and months was either by taking tylenol PM, benadryl or simply sleep. Even with that, I was getting 3-4 hrs., waking up and not being able to go back to sleep or sleeping for maybe another hour or so. The other day, I slept 9 1/2 hours straight...no waking at all!! Also, because of the indication on the meds, I haven't been taking anything else (no sleep aids, 5 HTP--nada). Maybe it is too soon to tell, but honestly, I feel different...better. Also, my husband has reported that he doesn't feel the need to even things up that he touches and can walk away from OCD tendencies. I think that is huge! His history is pretty classic PANDAS--separation anxiety, rages, OCD, frequent strep infections. I think I had my own room reserved at our pediatrician's office because of my frequent strep infections. I know I was more on the ADHD side, but also fearful of being alone. When we were growing up, there obviously wasn't a name for it though. We were both just labeled difficult/sensitive kids. The good news is, both of us function normally. I taught in public schools for eight years and my husband is a mid-level manager for an engineering company. I am just saying, if we actually had PANDAS as kids and made it through o.k., I have to believe that our children will as well. I don't know why things seem worse for our children though--maybe two parents with PANDAS, docs less inclined to prescribe antibiotics as when we were kids etc. We have a fabulous doc now, but it would be awesome if he was in the same state!!

Hi Wilma Jenks, As a result of all of the stress from having two PANDAS kids, my doc tried a few antidepressants with me. One day of zoloft was a nightmare...Celexa was equally a nightmare. I felt completely out of control of my body/thoughts--and I was only taking 10 mg/day for three days. I would wake up at 2-3 AM and feel like I had just consumed a gallon of coffee. I was literally shaking. I cannot fully describe the feeling of being out of control of myself during those three days, but it was bad, bad, bad. Needless to say, it scared the dickens out of me, and I stopped taking it. I often think I have/had PANDAS for my entire life. I function normally now (some mild OCD, ADD and depression), but as someone mentioned Dr. Murphy stressed caution when introducing SSRI's to PANDAS patients...what if I was having the same reaction a PANDAS child would experience? I have been taking 5 HTP without all the terrible side effects of Celexa or Zoloft and it has been better. I am not 100%, but it's definitely an improvement. My prayers are with you and your DD.

PS: Stephanie has great points too. We didn't have the other issues initially, but had to switch to augmentin, flagyl etc. to get rid of clostridia etc. Scott will run labs and get your dd on the right course!

With azith., my son stayed symptomatic for several days, then I slowly started watching a drop off. With omnicef, it was a slow, steady drop day after day. I remarked about this to Dr. Murphy one time and she said that made sense to her because of the way the medication was formulated. I hope that helps...

I am not sure if it is memory or OCD, but I tend to think it can be either one depending on the exacerbation. When my DS5 first presented, he would cry and cry and ask me if he would be able to remember all the "bad" things he did when he died and went to Heaven (to me OCD). Now, when I ask him to do things, he spaces out totally and says he doesn't hear me or doesn't remember what I asked. In this case, I really think he can't remember or his mind is elsewhere when I ask him. Also, we do journaling every day. If he is symptomatic and I talk him through how to spell things, he cannot remember how to form certain letters. When he isn't exacerbating or when he is just mildly symptomatic, letter recognition and how to write the letters isn't an issue. That to me is definitely a memory issue related to PANDAS, not OCD. Now DS7, who is quite bright for his age, sometimes cannot remember simple sight words he has known since he was 3 1/2 - 4 years old. That is definitely a memory issue, not OCD. Hang in there! I am terribly sorry you are going through this too.

Keep in mind this post is coming from a former elementary teacher with eight years experience teaching mainly first grade (4th as well). First of all, I am so sorry for your experience. Dude, the letter "e", really??? I remember having to calm parents down about letter reversals being totally normal in first grade. "Your child is fine, it is totally normal to reverse letters...no worries". It truly sounds like she is just trying to find things to pick on--sigh. I will be honest, I can think of many, many times when I left a parent conference thinking "oh these parents just don't get it". Sadly, I was the one that didn't get it. Not only was I teaching prior to having children of my own (which REALLY changes the way I viewed my instructional methods), but I truly thought I had it together and KNEW what these children needed. If only the parents would do "a, b, c", then their children would turn out perfectly. What a juvenile philosophy!!! Aah, to be young and ignorant... I see through a PANDAS mom's eyes now. A sledgehammer came down on our world. It has been a real slap in the face for me because I was most comfortable and in my element in public elementary schools. I also see how incredibly difficult it is to break through that glassy stare or polite nod by school staff that they know what is happening with my sons. No, most teachers/staff don't see it and they don't get it. How can you get that DS5 was so OCD that he didn't eat for two weeks; that DS7 has to shoot imaginary "cancer" to knock it off it's trajectory before it hits him and that's just the tip of the iceberg??? I think the problem is there is a culture of "us against them" with some teachers and the parents that they deal with on a daily basis. It's either that or they just don't believe in PANDAS (because they've never heard of it and it sounds crazy to them) or they genuinely don't care what is going on with their students. How terribly sad is that? I hate to sound so cynical, but it's just what I have seen this year in particular. That was not the case with DS5's pre-K teacher last year...she was AMAZING and I couldn't have asked for a stronger advocate for my child. DS7's kindergarten teacher was also great about PANDAS last year, but his first grade teacher and the former principal...not so much. I haven't even approached the principal this year, and honestly the guidance counselor makes a mad dash in the opposite direction if she sees me coming. I feel like it is a total bother for his first grade teacher to have DS7 come to the clinic at lunch so I can dispense meds (would have nurse do it, but one med has to be crushed and given in yogurt, so the nurse won't do that). To make a long story short, we are bailing on public schools beginning in January. It's just too tough to explain to people and honestly, unless you are walking in our shoes, they won't/don't get it. I think they think we are overreacting, exaggerating or somehow excusing our kids and that is not the case. I just want to scream--please listen, really listen to what I am telling you and have some stinking compassion. Ugh. I would keep your sweet little girl at home. I have decided to circle the wagons around my boys and teach them at home. Besides, DS7's natural inquisitiveness and love for learning is quickly becoming extinguished at school. He isn't getting into trouble, but I am so frustrated that he has to sit for soooo long during the day and how many times is he just going to watch a movie during art, music or PE. Really??? The work is too easy, yet his teacher refuses to make it harder for him because he becomes easily distracted. (Duh, it's because you aren't challenging him). "Until he can do his work in the two minutes I know it would take him to complete the assignment, I will not give him a different assignment". And really, how many more bugs is he going to have to catch at school...we're up to five this year, which is actually an improvement from last year, but it just makes things worse. He is forced to read books he could read when he was four because she is teaching to the majority. Sorry, just got on my soap box. DS7 wakes up each morning counting down the days until he gets to start home school in January. I feel a huge sense of relief knowing that we're done with public schools and I wish I had the strength to fight for them to get it.

Oh Stephanie, I am so sorry! I am still trying to get my e-mail out to you...but DS7 and DS5 abandoned Bruce Banner peace for the Hulk a couple days ago. Bruce is coming back thankfully--toy jail works too. My sister's brilliant idea of cutting out "bars" in a large cardboard box that she kept on top of the refrigerator. If the kids didn't pick up their stuff, it was sentenced to toy jail for a week or longer depending on how ticked she was that they never picked up their stuff. I'm telling you, toy jail is a winner!

How do you do an oral challenge? We are "allergic" to penicilin, so Augmentin is off the table for us. Our immunologist talked about testing her in the office if we ever needed it - but I have no idea what that means. I have also had a doc tell us that sometimes kids that seem to be allergic to abx are actually shedding toxins. Not sure how you'd ever know which is which. Tantrums, hope he does better soon. If I could not get abx, I would try the "natural abx". Thanks! Sorry I am just getting back to you--crazy week! The immunologist wrote a prescription for the antibiotic we wanted to have tested (penicillin). We picked up the prescription the day before our appointment with the immunologist. On the day of our appointment, we were made comfortable in an examination room (note--take lots of stuff to occupy you as you will be there several hours) and the nurse mixed up an extremely diluted amount of penicillin. Honestly, I thought she was giving my son water because it didn't have a hint of the pink coloring of the penicillin. She would come back at timed intervals (every 20-30 minutes) to check him for any reaction at all, then she would give him a slightly less diluted dose of penicillin. We repeated that over and over until he finally got a full dose of penicillin about two and a half hours after we arrived. We stayed longer for them to continue to monitor him. He never displayed ANY signs of an allergic reaction. The immunologist came in and said, "he's not allergic", so that was that. We literally thought for five years he was allergic. Soooo nice to be able to access penicillin/amox./augmentin now! I hope you get the same result!!

We thought my son was allergic to penicillin and omnicef for years because he would break out in a rash not long after starting the medication. This summer we finally had an oral challenge with our immunologist, and it turns out he isn't allergic at all. Some viruses can interact with the abx. and produce a rash. I truly was convinced my son was allergic, but he has had penicillin and omnicef since his oral challenge and never ended up with a rash. It would be totally worth a try if it could put those meds back in your arsenal.

We were given z-packs. We started with one week, but had another week and now take a 500 mg azith per week (the whole family does) long term. We were given a five month supply, but I don't know how long "long term" we will be taking it. We haven't been retested, but our doc said if ds5 and now ds7 start becoming symptomatic again, we'd repeat the tests to see if it's still lingering. Our dog was also treated with 14 days of antibiotics--we didn't have her tested as our vet said you may get a false negative result depending on where you swab. He just treated her as if she was positive. Unfortunately, our doc left the practice and our new doc hasn't elaborated on the protocol we'll follow regarding our carrier status. We go to our new doc in about three weeks. I will ask and let you know what he says. Our appointments have been full of trying to get yeast and clostridia under control.

Hi, thanks for your response. By "treated" do you mean a session of oral antibiotics or something else? When we realized my dd(4) had it ( no symptoms) and had, basically, been passing it back and forth to my older dd the Dr gave all of us oral antibiotics. We had to go through two to get it right on the younger dd and we had everyone tested to ensure it was GONE. So, is that enough or is there something else we should do?

Wow, thank you so much for putting it down like that. It brought tears to my eyes because our DS5 was always soo amazingly sweet and compassionate before this started. It's hard to hear the things that come out of his mouth sometimes and hard for me not to take it personally even though I know it's not him. I really appreciate your insights though--it helps so much!

My ds5 does the upside down thing off the couch a lot. Yikes...never connected it to PANDAS. He also takes gymnastics and LOVES to do handstands all the time.

I am thinking of jumping with you Stephanie...we have two more weeks on Flagyl to control Clostridia, then I'm done. I am sooooo happy things are going well with DS5 and DS2!! :)

My husband and I both tested positive as strep carriers as well. We were treated, but told the treatment only lasts about a year and then we'd have to be re-treated as it is pretty much a part of us. We're all taking Azith (even the dog was treated) long term per docs orders.

Hi Emerson, First of all...you are awesome! Thank you so much for sharing your insights. I have two boys with PANDAS (ds5, ds7). My husband feels absolutely certain he had PANDAS as a child, and from hearing stories from his mom, I don't doubt it for a minute. He still has OCD, and honestly he won't tell me the extent to how much it affects him because he said if he talks about it, it makes it worse. I do know he has to touch things twice, he also charts his workouts obsessively (if I want to know what he did on February 20, 1999, I could look it up), I won't even go into our extensive monthly budget spreadsheets (again, if I want to know how much I spent on groceries and where I bought them for the month of April 2001, I could look it up), and I know he has to look at some things a certain amount of time, turn his head and repeat. I honestly don't see him doing this much because he is extremely good at hiding it, and functions completely well at work as an engineering manager. At any rate, he is a math whiz...he has his masters in electrical engineering. Extremely complex problems are easy for him, but simple math--2+2 dividing simple numbers always seems to throw him for a loop. We always laugh it off, but I never realized it may be part of PANDAS in some way. I don't know, but it sounds very similar. I am going to tell him about your post. I think I probably had PANDAS as a child too--more ADHD things, but also some OCD. Lara M

Hi Stephanie! We're on some of the same things, but I want to look into LDN, Enhansa and Spironolactone. BTW, Dr. R put DS5 and DS7 on 100 mg of 5 HTP. I have found that if I mix that in with their probiotics right at bedtime, they sleep really well (I hear the angels singing!!). DS5 has even been going to bed without extreme anxiety and needing me in the room EVEN with the strep infection last week. We experienced the exact same thing as your family...the bacteria has been the issue with DS5 this time around--really not much PANDAS related (some OCD needing to touch evenly, but we can take that over rages any day!). DS7...still a bit of a vocal tic (particularly when he is reading out loud), but hopefully it will improve. Dr. R prescribed a steroid taper along with Flagyl. We'll start the Flagyl tomorrow (if DS5 can keep it down). Five days post-Flagyl, we'll start the steroid taper. He also prescribed oxytocin nasal spray, but it hasn't arrived from the compounding pharmacy yet. Has anyone ever tried that...we're hoping it will hope with social interaction/eye contact. Picked up some Olive leaf extract today too...I'll start that after all abx come to an end.