laurenjohnsonsmom

I L VE your AWES ME! To c L!!!!

I'm soooooooo happy for you! Every child (and family) deserves to be where you are right now. I am hopeful that in time we will all be celebrating small strides and great accomplishments! You can contribute it to her treatment but your neverending will and determination to find healing is the real reason she is doing so well right now! Give yourself a "pat on the back"-you derserve it! Lynn

My heart goes out to you. It exhausted me just to read your post and you're living it. I know it's easier said than done but stay strong. You are on the right path. PANDAS or not (my guess would be PANDAS with aspergers/autism) you have a family here on this forum that will help you along the way. I would suggest possibly contacting Scott Smith PA. He works with Dr. Bradstreet and they specialize (and are highly respected) in PANDAS and Autism. They also have a non-profit group affiliated and DO NOT turn anyone away because of inability to pay for care. Jeff Bradstreet & Scott Smith, PA Speializing in Autism/PANDAS Melbourne FL/Irvine, CA www.icdrc.org Lynn www.pandasresourcenetwork.org Educate, Communicate, Cure

Ditto! Lyme has to go first and it is so tricky to diagnose & treat. (so many bands). Even doing the elisa and/or western blot doesn't necessarily rule Lyme out (did I mention so many bands and it hides). I know more families/children who went through IVIG unsuccessfully only to find out later that their pandas child/children/whole family has Lyme! All suspected PANDAS children should always be thoroughly tested for Lyme in my opinion (only my opinion)! Lauren and I just sent our serum to Igenix (sp?) lab for a comprehensive Lyme panel (not cheap at I believe a $475 price tag each) but worth it if it gives us more clues/answers.

(Bump)...I keep getting PM messages regarding question #2. Strep was meant to be included but I think a lot of parents read it otherwise so its turned out not to be a very effective poll question. I thought this poll was lost in the archives but someone had resurrected it recently. I thought about starting it all over again. Thanks to everyone who has recently taken interest. Lynn www.pandasresourcenetwork.org Educate, Communicate, Cure

Laura, I'm confused. Didn't your family treat with steroids (not bursts as in "aiding in clinical diagnosis") but steroid treatment to alleviate symptoms for a long period of time? (I might have you confused with other posts here). If so, is that not the "band-aid approach"? Did you ever do IVIG? If so, how did it go? Lynn I'm very confused by this train of thought. If your child has a broken leg, give her morphine. If that makes the pain go away, keep giving morphine. If it doesn't help, then you can have surgery to fix the leg. IVIg is used to treat an immune issue. These supplements are bandaids and at best, treat symptoms without fixing the underlying cause. I'm not knocking anyone who uses supplements. We used inositol to get us through a bad winter. But it was to help us cope while we tried to find a doctor who'd help my son get better. Not an end to itself. (and btw - it can take 6 weeks for inositol to work, not 3, and even then, you have to be at a high enough dose, which is trial and error). He should not be withholding IVIg and telling you to try supplements first. Is it just me, or is this crazy?

I'm going to do my best at adding to this thread as Lauren has had 2 ivig treatments and will be having her third in early August. Most of these things are way over my head as I am not the "braniac" like Buster (Buster-that's a compliment)! Lauren's IGg levels are borderline "low normal/high abnormal" and the way that Dr. B explained it to me (and the reason why we together, decided to do continuing IVIG) is that Immunodeficiency (or immune deficiency) is a state in which the immune system's ability to fight infectious disease is compromised or entirely absent. Most cases of immunodeficiency are acquired ("secondary") but some people are born with defects in the immune system, or primary immunodeficiency. A person who has an immunodeficiency of any kind is said to be immunocompromised. An immunocompromised person may be particularly vulnerable to opportunistic infections, in addition to normal infections that could affect everyone. with the above taking into consideration, some people have low total IGg levels but for some reason are NOT immunocompromised (have chronic repeated infections) BUT some people who have low normal/abnormal IGg levels DO suffer from chronic infections (more than 1 a quater/4x a year) as in Laurens case. Lauren was sick constantly the entire year leading up to her sneezing manifestation last fall (she missed 26 school days in the 5th grade and manifested in the beginning of 6th grade). She succumbed to strep infections and other viruses/bacteria throughout her childhood (more than you care to count) as early as 21 months of age when she had scarlet fever. Lauren continues to have repeated infections including strep three weeks after both IVIG’s 1&2. As Dr. B puts it, “having the good antibodies in her does not keep infection away but limits it severity”. She might “slip a foot off the wagon” but without the IVIG/antibodies she probably would have “fell completely off the wagon”. Are we doing this the right way? Who knows? Is every child and PANDAS case different? Absolutely! Peglem and Melanie, I’m sure there are specific differences in how your children are immunocompromised. Are there IGg levels low? Do they have chronic infection? Hoping this came out right. This is one f the questions Dr. B is going to address when we add the Q&A to the PRN website (he was supposedto have that back to me by end of June, he's a busy man these days). He says it will be done soon so hopefully it will be more detailed and "doctorly" (is that a word) then my two cents! Lynn www.pandasresourcenetwork.org Educate, Communicate, Cure

He has a lot of anger issues like Mary's daughter. The two years we tried to understand what was wrong with him was traumatizing for him (and our family) to say the least. The hardest part is sending your child 17 hours away because you have to protect your other children. His grandfather he lives with is an DO who is older than "coke in a can" (a PANDAS non-believer). I've sent Madelein's kit to them prepaid. Begged them to do bloodwork and NOTHING! We are just driving back (32 hours round trip) from Muchigan (been there for 5 days) and never even saw him. So yes, EAmon and Mary I know what it feels like to have PANDAS successes (my beautiful functional daughter who just 6 months was sneezing 25,000x a min) and to have failures as in my son's case. It's why the pandasresourcenetwork exists-in hopes what happened with our son's (his misdiagnosis) doesn't have to ever happen to anyone else. I appreciate your encouragement and kind words! The virtual family here is the best! Lynn www.pandasresourcenetwork.org educate, communicate, cure

Agreed! It's very common to have severe headache post ivig as my daughter did after ivig #1. Dr. B's office gave her predisone before started day two and it worked like a charm. IV fluids before and after the ivig fluids helps substancially as well. We did this during ivig #2 and didn't need to use the steroids until the day after we finished ivig and returned home (headache returned). We did one dose of predisone 30mg (she's 107 lbs) and it worked quickly. The key is to get it into them before their stomach gets to upset so that they don't throw it up! Try keeping them laying down or getting th back to sleep. From what parents and doctors tell ne daily, this is pretty standard practice. Lynn www.pandasresourcenetwork.org educate, communicate, cure

Hi Mary, My heart goes out to you. It brings back memories of when we had to lock everything up in a storage unit as my ds 14 at the time could pick locks and would steal the keys when we were sleeping as he roamed the house all night. When I say everything I mean "everything" every knife, glass, shovels, razors, blunt objects). We installed key licks in every interior door of the house and my husband and I would take turns sleeping with our younger dds 6 & 8 at the time) behind locked bedroom doors the other one of us would stay awake all night keeping a careful watch on DS14! Even looking back almost 4 years later is difficult to do. I know people say it can be harder to treat the "older kids" but find some comfort, if you can, that at least you know what PANDAS is and that you are trying to help to the best of your ability (as I'm sure the doctors are as well). Our son was never diagnosed PANDAS when we rushed him in to the ED in the fall of 2006 after he started raging etc overnight. Even though my perfectly functioning 14 year old, caring son, started acting crazy overnight! Nobody in the ER, the ER doc's who did the psych eval, NOBODY thought to look into he "medical history" where we would have told them that he along with my other two daughter had strep in the last 10 days. Nobody seemed to think or relay it to what was going on. Instead we left feeling like "bad parents", we blamed it on puberty/hormones, our recent move, him just being a "unruly teenager". We put him on psycotropic drugs which made him way worse off. His perfect honor roll grades dropped to "f's". He ended up being temporarily and permanent institutionalized over the course of almost 2 years. Nobody could figure out what was wrong. He now has been living with his grandparents in Michigan for the past two years, barely functioning. My honor roll son with the huge heart who would do anything for anybody could not even graduate from high school thus year.(almost but few credits shy). He is eighteen now and has to make his own decisions and he has given up that he will ever be the way he used to before he got strep in October of 2006 (10/18/06 to be exact but whose keeping track)? You have a chance with your daughter. I know you feel beat down but know that if you can find healing it will be worth it in the end. I would give my right arm (and both legs) if I could get my son into ivig even if there's less of a chance of it working due to his age. I've heard mixed reports that psyc meds help and in our case made things a lot worse. (((hugs))) to you and your daughter. You're trying your best. Lynn www.pandasresourcenetwork.org educate, communicate, cure

Edit..(double post)

Hi Johnsmom, Duh! Forgot about the fact that your were so close post ivig. My DD10 (just two years younger than Lauren) is used as the guinea pig so to speak (also she's an asymptomatic carrier)-Uuuh! So usually she'll be positive when laurens having issues (canary effect) or she'll be symptomatic sick just before Lauren starts "chirpping". Do you have any siblings that may be doing the same? When we suspect Lauren to be ill (strep or other) post ivig we always switch her from the 500mg/day azith to augmenting for 14 days and it has worked both times even when the last time (3wks post ivig #2) she had new tics manifest. Something to consider even though every child is different. Lynn www.pandasresourcenetwork.org "educate, communicate, cure"

Tapiash, Our story has some similarities to Buster's as with Lauren, almost 3 weeks to the day we unexpectedly saw Lauren's social anxiety/anxiety drastically improve instantly almost 90+% from her "norm". Prior to her "sneezing" manifestation last fall Lauren suffered from severe social anxiety/general anxiety but we had no idea it was PANDAS related (didnt even know what PANDAS was-bears?) until we saw this drastic improvement after her first ivig. That was a "bonus" to say the least, on top of the fact that the ivig stopped her sneezing tics in their tracks! With that said, when you see backslides (mild or severe, long lived or short, new tics and/or turning back the pages you say.."what the "blank" was I thinking"!?! As far as having to make this decision I can tell you I can soooo relate as it is the worst feeling in the world to decide on a medical procedure (even with low risks) that nobodys quite sure will work or not. When Lauren was sneezing every other breath (completely non-fuctioning) I was desperate/would have done anything (hence why we were on tv). Luckily the antibiotics and steroids slowed things down by about 50% quickly but at 50% percent you have to ask yourself, "is the glass half empty or half full"? We chose ivig for many reasons (Lauren was not sustaining her improvement as we decreased the steroids, we felt the antibiotics/steroids were only treating the symptoms not eradicating the immune assault on her body and Lauren's IGg levels were low/immune compromised) but we chose this route most importantly because we made the decision collectively "with" her doctor in who we trust (even though he or anyone else doesn't have all the answers yet in this mysterious disease). As a mother you worry and will only blame yourself if things don't turn out as expected but if you don't try you will always wonder "what if". Know in your heart that your doing the best with you know for your daughter and feel confident in your decision even when you're not confident in the outcome. You're doing your very best. It's a terrible burden and decision to make as so many of us already have and will continue to in the future but know you're not alone in the club and we all support you in whatever decision you make. Best of luck to you and your family. Lynn www.pandasresourcenetwork.org "educate, communicate, cure"

I'm so sorry this is happening to you. Take I to the lab and check his aso/antiDnase tigers for strep. if Dr. K did his I if he should be able to order the labs. Have you tried giving home some ibuprohen? Lauren had strep 3-1/2 weeks after both ivig #1 and Ivig #2. she breezed through the first strep with no symptoms but strep after ivig #2 came with an increase in her eye blinking tics and new tics (throat clearing/coughing) plus her anxiety damped up and we actually heard her "snneze tic" Luke 5 times (let me tell you I had dr. B on the phone so fast your head would have spinned)! Both times she was exposed to these strep bacteria we changed her from her normal azirh 500mg/once a day prof dose to 875 augmentin for two weeks. It seemed to do the trick as when the cold/strep went away the pandas symptoms subsided as well. Dr. B said that the ivig will not prevent them from"slipping a foot off the wagon" if they become exposed but should help keep them from completely "falling off the wagon". I know every child is different but I hope this helps. Lynn Johnson www.pandasresourcenetwork.org

Stephanie, got your email (at dinner-duh)! Will reply when I get home. Guess what? I'll be in Florida in July! Going to stop in Charlotte on the way to see momMD. Let's get together! Lynn

How cool is that? I have been so fortunate to meet so many of you in person over tha last few months. Has anyone else had the chance to meet in person?

I would be happy to update the PANDAS Resource Network site letting everyone know we made it and asking them to help these other causes as well. Vickie or Kelly, will you key me know which organization(s) to add? Lynn

Hi Vickie, I just came across this post as I have been off the forum for a few weeks. In response to your question, the PANDAS Resource Nerwork is being sponsored by OU PANDAS Foundation until our own IRS non-exempt status is processed and approved (this takes months). So we are one in the same in which we solely support Dr. Cunningham's efforts and any donations recieved go into the OU PANDAS Fund. Sponsorship from one non-profit to another is routinley done when a new non-profit is established. Little to late for the today show effort but wanted to clarify. Lynn In reference to the question about the photo. Did you save a photo on your computer? If so, when you click "browse" it connects you to all your files. You find the one you want to use and double click. The photo itself will not pop up on the entry but the info of it fills the box. You should then be able to submit it. One moment.....Since Lynn Johnson heads PRN and she has been affiliated w/ the Today Show, would there be a conflict of interest if anyone lists PRN? Opinions on PRN vs just listing Dr C would be appreciated.

Vickie & Kelly, Congrats to you both for getting this off the ground and seeing it to the end! A BIG thank you to all the parents who made this successful. It couldn't be done without a collective effort! Great things can be accomplished when people come together! I am so happy to see Dr. Cunningham's research supported and more awareness for PANDAS in the media. Yippee!!!! Lynn

IowaDawn & WorriedDad, We used rifampin along with omnicef (dd11 allergic to augmentin) to break the carrier state as suggested by Scott Smith PA. Worked like a charm. Our whole family tested positive too! Hope this helps! Lynn www.pediatricweb.com/madisonped

That was a topic I brought up during the think tank and Swedo was absolutley in agreement in the importance of diagnosing and erradicating step from the household. I know some PANDAS doctors aren't so viligant regarding thus but it is an important step in the treatment of this disease. Dr. Bouboulis has always addressed this so he had nothing new to add to the topic that he isn't already doing...

We are still updated many parts of the website but wanted to let you all know of the changes. I will be sending out an email again to our entire member database (500+ now) and reminding/encouraging them to vote everyday! Hope this helps! Lynn

what if we could set up a voting station with a couple laptops where people could vote right there!!!

Vickie, I am trying to get a link to the PEPSI Refresh on the front page of the PANDAS Resource Network site. Working with my web peeps as we speak. Also, I can plug it during my presentation and add a PowerPoint slide as well. Call me to discuss! Anything I can do to help! Lynn

Dr. B and myself will have PANDAS Resource Network business cards to hand out. On the back they read "You DO NOT need a diagnosed strep infection to have PANDAS" and then there is a pretty detailed lists of signs and symptoms. We are just finishing up our move of the website to the new server and the update. There will be a permanant link and logo to this forum on the front page of the site. I am trying to get a link to the Pepsi Refresh page. Forms to submit ideas/stories. Our two wonderful psycologists (one of which has two pandas children) will be lgin adding indormation to the coping tools area. They have had great success with helping families/pandas children on coping with OCD. We will begin the "ask the doctors" feature and the "share your story" area will begin to be populated. There's a lot more but I will keep this to a brief summary. As far as conference presentations are concerned. I am particularly interested in what Swedo, Cunningham have to say as it seems we have come a long way in the PANDAS world just in the last year and wonder if this will be reflected in what they present. I know if LLM's presentation is anything similar to her AurismOne article-it will be fantastic! It will be informative and something that may open the door to a new pandas parent and or doctor. My presentation will focus on how PANDAS has effected our entire family starting four years ago with my son and most recently our other two daughters (not what you saw in the media). I will discuss what parents ask me every day-what we did that we think brought us the greatest success in healing. The "do's and don'ts" we learned along the way. I will be discussing how Lauren suffers from chronic infection/immundeficency and how repetative, ongoing ivig had been effective, etc. Dr. B will be discussing the autoimmune role in PANDAS and how cryptic strep can hide in other areas of the body. We plan to do an open/informal Q&A with the audience at the end of the presentation as long as time allows. So, will you guys learn anything you don't already know? I'm not sure. I surprise myself everyday when I'm terracing a research paper I have read a dozen times or just editing the PRN website. There will be something that makes more sense today then maybe yesterday. If only one person walks away from these presentations with the "aha" moment that someone they care about may have PANDAS and now has a start to their journey, It will all be worth it to me. Hoping I get a chance to me many more PANDAS parents at the conference. Please let me know if you're attending. Lynn