Stephanie2

My son is also 5 and I struggle with this from day to day b/c even when we have the pandas under control we have have some "yeast issues" which cause a different type of behavior problem. What I do is increase/decrease my expectations based on each day. I have a discipline program that I do (Accountable Kids) that involves having chore cards and earning tickets/privileges, etc... I expect him to do his basic chores (getting dressed, brushing teeth, etc...) on a rough day but I don't push the othe chores (take out the recycling, pick up toys, etc.). Also, on the good days I expect him to do as much as he can by himself, but on the bad days I will literally dress him myself while he stands there or lays there, as long as he cooperates and doesn't fight me. If he fights me I walk out of the room and come back when he is "ready to cooperate". Only you know what he is capable of each day. It's hard, but I am getting good at finding the right balance. We are not making the progress I would like at the age of 5, but when I see how well he responds on his good days, I know that in the end he will be able to function independently one day (my goal is that he is dressing himself and doing all his chores by the time he leaves for college...LOL!). Stephanie

Neither one sounds very fun! I hope you find the "culprit"! By the way, my younger son has symptomatic Chiari 1 Malformation with intermittent ataxia, headaches, devel. delay, etc.. I have often asked myself which one is easier to deal with - PANDAS or Chiari? Hands-down Chiari is easier to deal with (for me anyway!)!! That should tell you about the power of PANDAS!! It's a killer!! LOL! Stephanie

Isabel, You asked if anyone has tried natural remedies...I am not sure if you mean for the yeast, strep or both. I have had some success with Olive Leaf Extract for strep, and Oil of Oregano for yeast and strep. Here is what we are currently doing for yeast, it's a WAR!: Diflucan (on and off) Nystatin Phenol Assist (by Kirkman Labs), I give with each meal S. Boulardii Culturelle Antifungal Rotation (switch every 4 days): Oil of Oregano, Biocidin, Pau D'arco. At the moment we have yeast under control (even with 375 mg of Pen VK per day), but it crops up and I have to keep battling it... Best of luck! Stephanie

Over the summer we got the yeast under control with Diflucan and 2 probiotics. Then in August Pandas hit us really hard and he has been on antibiotics ever since. Yeast has been a constant battle ever since. Here is what we have done: Diflucan (on and off) Probiotics: S. Boulardii and Culturelle (1 capsule of each, twice a day, last dose right before bed and away from antibiotic) Antifungal rotation: Oil of Oregano, Biocidin, Pau D'arco (switch every 4 days) Nystatin 100,000 iu 3 times a day Phenol Assist (by Kirkman Labs) 1 capsule with each meal (I don't know why this works, but it does seem to blunt the effect of a high carb meal) Things did seem to improve when we recently added the Nystatin and Phenol Assist, but it seems that I have to constantly change things up to stay on top of the situation!! Hope this helps! Stephanie

I was wondering if anyone has witnessed something similar after the long school break? We switched my son from Zithromax to Pen VK on Thanksgiving Day. He is 5 yo, 44 lbs, and is taking 375 mg (split up 3 times a day). By that night I saw a major improvement in his PANDAS symptoms which were not completely controlled on Zithro. By Sunday, he was just amazing, almost all symptoms gone! Then today he went back to school and he came back a completely different child! He was having more verbal and motor tics, aggressive, meltdowns, auditory defensiveness and separation anxiety (couldn't even let me go to the bathroom!!!). It was like he wasn't even on medicine!! So, my thought is that this is b/c he missed his lunch time dose of Pen VK (he got it 3 hours late), but would that have made THAT MUCH of a difference? I am starting to wonder if there is a carrier in his class (I have wondered this before because sometimes he appears to improve over the weekend. Has anyone seen this happen with their child? I emailed the nurse and asked for the doctor to fill out paperwork allowing the school nurse to administer his lunch time dose. If that doesn't help, I am tempted to pull him out and homeschool him (he is in PreK) but I have a 21 month old at home who also has special needs so that would really take a lot out of me...ugh! Thanks for any input!! Stephanie

All I can say is that she stood me up twice for our initial phone consult so I had to move on to another doctor...we are much better now. My new doc talks to me every 2 weeks and we tweak his meds each time. Also, his nurse gets back to me within hours of any questions or requests. I know that Dr. Latimer is a wonderful doc but I don't know if all the aggravation I keep hearing about is worth it! This disease is too debillitating to have a doc you cannot depend on. Maybe you should consider working on plan B just in case you don't get anywhere with her. I don't mean to offend anyone...it's just that I waited for a long time to get with her and then she left me hanging...we were in a very bad place at the time. I was devastated to have to get on someone else's waiting list all over again. Just my 2 cents :-) Stephanie

Ibuprofen has really helped my son. What I see is that within 15-30 minutes his anger and aggression almost disappear and that lasts a good 4-5 hours. What it does not seem to help are the tics. I don't think I have ever seen the tics decrease. Stephanie

Peglem, can you tell me where you read/heard that? I often wonder if his speech delay is due to the chiari. He was delayed with gross motor milestones, but has caught up with PT. He really has no words at the age of 20 months...does not even say mama. He says dada and he repeats words once in a while, but no vocabulary...I am working with the DAN and also setting up ST. Yes, motherhood has been one thing after another, this is just the tip of the iceburg! I believe that things will get better one day! I have to believe it to survive! Stephanie

Thanks for all the input... Today his "strange behavior" seems even worse and I think I am going to get off my butt and bring him into either urgent care or drive up to Melbourne and see the DAN doctor, who is treating my 5 year old successfully. I am just so tired of all the appts/tests and it has taken 3.5 years to get my 5 year old worked out and now this...it feels like it will never end (oh, I forgot to mention that we also have the complication in that he, the 20 month old, also has Chiari Malformation which causes pain/irritability). Now that I think about it, maybe the only way to know if he has pandas is to do the cunningham test. Ugh...guess I just need to keep on movin... Stephanie Oh, and to answer one of the questions. The stool culture was done by the DAN doctor. It is called a Comprehensive Diagnositc Stool Analysis. I don't know if the standard doctor would do this type of test, it is usually run by DAN/alternative med docs. It looks for things like yeast, clostridia, nutritional deficiencies, parasites, good bacteria and bad. Turns out he was positive for strep but I was so in over my head with my 5 year old at the time that I never followed this up with a strep titer or an antibiotic. He gets very bad bowel problems when he goes on antibiotics. Plus, he was teething at the time and he is non-verbal, so it is so hard to assess what is going on with him.

OK, I have been wondering what PANDAS looks like in a baby of 20 months? My 5 year old has it, and I can remember back when he was that age. Right before a positive strep infection he became EXTREMEMLY anxious over me leaving the room, or even putting him down. Of course, I didn't know it at the time, but I believe that was his first pandas episode. So, now for the past 6 months strange things are happening with my 20 month old. Back in May he started having these eye tics. I was sure they were seizures and had the 24 hour eeg done, it came back negative for seizures. Then the neurologist asked if he had been exposed to strep recently and of course he had (it also came back positive for strep in a stool culture). Then over time the eye tics went away. Well, here is what happened recently. A week ago, out of the blue he started having very crazed tantrums. Not the typical toddler tantrums. He just goes completely crazy and my dh and I can not figure out why! And then 2 days later he got sick...lung infection, sinus infection, etc... Today, he seems to be getting pissed off over the stupidest things! Like when I sing to him (ahhh...the lovely sound sensitivitiy) and when I was pushing him outside on the baby swing, he got pissed off when I sat down on the swing next to him, even though I was still pushing him! He would only stop crying if I stood up, right in front of him to push him! How WEIRD! As I am typing this, it is starting to sound like a no-brainer, but I have no idea how a "normal" baby acts, as I've never had one! Can someone clue me in? I guess the good news is that if he does have pandas, he does not appear to have it as bad as my 5 year old. He still seems to have some joy in his day and he/I can still function at this point. And to complicate matters, the pediatrician REFUSES to do a strep culture on a baby who is younger than 2 years old. She says it is impossible for him to have strep throat... (well, now that I think of it, maybe he has it elsewhere...in his stool again?). I could go to our DAN doctor, but he is 2 hours away...ugh! Thanks for any input on this. Stephanie

I guess you would need to contact the Florida office, I am under the impression that Dr. Bradstreet sees patients in California... Stephanie

Some of you may remember that I finally found a great doc to treat my son's pandas (original thread: http://www.latitudes.org/forums/index.php?...;hl=stephanie2) and I wanted to report back that he is doing so much better! He took 200 mg the first three days (he is 44 lbs.) and then we went to 200 mg every other day. Next week, he wants me to give him 200 mg every 3 days (he says that my son is not big enough to give him the full 500 mg once a week, so it will be 200 mg every 3 days...). I have to admit, though, that on his days off zithro, I have been giving him about 800 mg of Olive Leaf Extract, which I have heard from several moms that it helped them to kill strep. I didn't tell the doc that I am doing this, but I will tell him at our next appt. All I know is that each day seems to be getting better! Just thought I would include our (so far) success story! Stephanie

I am noticing that a lot of moms from California are looking for a good pandas doctor. I posted the following thread a couple of weeks ago about my experience with this practice, located in Melbourne, FL. I forgot to mention that they have an office in California: www.icdrc.org. I think that only one of the docs goes out to the cali location, but I'm not sure. here is the thread with details about the practice: http://www.latitudes.org/forums/index.php?...p;hl=stephanie2 Hope this helps, Stephanie

Thank you so much for all of your input! To respond to a few of your posts: Yes, he is on some probiotics and also some antifungal herbs and diflucan! Yeast doesn't stand a chance at this point (although the diflucan will be DC'd in a couple of days...we will see!) He is already seeing an OT who specializes in sensory integration issues, so I guess they will be helping him catch up to speed, too. RDI, I have heard of it and actually tried to implement it when I felt that my 20 month old was regressing into autism. I didn't get very far, b/c we "got him back" very quickly with biomedical interventions...haleluia! But, I never thought of using this therapy on my 5 year old. I wouldn't know where to begin. I will definitely look into this. Also, as an update I did some brainstorming this past week and I found a great "discipline program" called Accountable Kids. It is based on rewards and consequences and includes a lot of life skills. It is one of the best I have found b/c they do all the work for you (there is a pegboard where the child manages his responsibilities and rewards). Here is the website: http://www.accountablekids.com/ Anyway, my son, very surprisingly, has really taken to this system. It is very organized and really gives the child a lot of control over his/her life. I think this will definitely help bring order to our lives. Stephanie

Judy, check out this thread that I started a couple of weeks ago. I had great success with a practice in Melbourne, FL and I believe that they have a practice in California. See the thread and the doctor's website: http://www.latitudes.org/forums/index.php?...p;hl=stephanie2 www.icdrc.org Best of luck! Stephanie

So, what type of therapy should I seek for a child who had PANDAS throughout his life and now needs to catch up to his peers with general "life skills"? I mean, a psychologist? Are there really any psychs who have ever dealt with a child who has recovered form pandas? I am starting to think I am on my own with this...just start from scratch, as if he is 20 months (when it all began) and teach him how to go through life? It feels a little overwhelming! I don't really know where to begin. I am planning to set up a behavior chart, but it is so much more than behavior. He needs to learn routines of daily living...getting dressed by himself, eating at the table, etc... Anyone have any ideas? Stephanie I'm kinda in the same boat you are....my daughter's PANDAS begin very early- before age 2. It has drastically altered her early childhood development and all subsequent development. So, my judgement of treatment effectiveness will be, is she getting better-moving in the right direction. At this point (my daughter is 15 now) I don't expect normal, but I sure do expect that she will began to make some progress developmentally, to regain some functioning that was lost to her. Treatment will only remove or reduce the impairment...the development/learning will still need some help- therapy!

It is hard for me to see where my child is at right now b/c he has had pandas since he was 18 months old and now he is 5. There have been very few times in his life, if any, when he has acted "normal", so I don't really know what I am looking for. We just found out about this over the summer and we just got him on a treatment plan last week (200 mg zithromax, slowly weaning to see what dose he needs to stay on prophylactically). We did 200 mg daily last week and now 200 mg every other day. Doc wants me to slowly get him to 200 mg every 3rd day and stay there for awhile. We are now on the 200 mg every other day and I have to say that he is doing very well (by the way, I am cheating by giving him some Olive Leaf Extract on the days off b/c I am too scared to just give him nothing!). The depression/anger seems to be gone and he is much less anxious (OCD seems to be quite reduced). There is some real normalcy in our house right now which is the ultimate goal. However, he still has some tics (mild) and some sensory defensiveness (auditory and tactile). I guess I am wondering if some kids ultimately never lose the sensory stuff and we need to keep going with OT for a while. And do some still have some mild OCD that needs therapy? I hate to increase his zithromax again b/c he gets some real behavior issues with yeast. I guess what I am asking is how do you really evaluate the effectiveness of a treatment plan? Do you just go by gut instinct? Stephanie

Faith, that is really an excellent point, it does seem like most on this board have older children, I guess b/c when your children were younger there just wasn't enough information about pandas to come up with a dx. How sad! I guess I should consider myself lucky that my child was born AFTER this disorder was discovered/researched. Also, I wanted to add that I do suspect that my 20 month old may have pandas, as I noticed an eye tic develop at the age of 15 months, the same week my older son had strep. I though it was seizures and took him in to have a 24 hour EEG done. It came back negative and I was shocked when the neurologist asked if he recently had strep! So, he did have strep, but I have not seen enough of a pattern to definitively decide if he has pandas. Right now he is very emotional, but he is also 20 months old and he is teething...no way to know at this age. He does not currently have tics, they went away. Stephanie So the older kids are going to be the ones who will be diagnosed later, as we are seeing here with some of our kids, but I think over time, it will be younger or as soon as one sees a pattern of something going on. It should take two or three episodes to see what might be happening. and if they're treated early enough, maybe just antibiotcs would nip it and it won't get to where some of us here are. Faith

We have had good and bad times with halloween. Don't get me started on the school halloween parties. Whenever I show up at school, he runs to me and cries and tantrums and wants to go home. I always sat there baffled as to why the other kids are participating in their halloween parties with their mommies by their sides and mine is falling apart. I eventually started keeping him home on these days so we didnt' have to suffer the stress and humiliation of these episodes! What baffles me is that right now my son is on zithromax and I consider him to be in recovery mode, and he STILL fell apart the other day at his party. He had to be on my lap (he is 5). I was there to VOLUNTEER for heaven's sakes. The teacher kept looking at us wondering if she should help, but she was trying to run the party and she needed my help! Ugh! I just could have cried, I just kept thinking, "when will we have a normal life"? So I finally got him off my lap and went about helping with the party, but my son had to hold my hand the whole time... Anyway, my son does like to trick or treat. I really think he likes the repetitive nature of collecting things, part of the OCD in some way. So it is right up his ally. Although, he is already getting anxious about the paint I am planning to put on his face! This thread just reminds me that I am not alone!! Thanks! And good luck this year and next! Maybe it is pandas, combined with his personality in general!! Stephanie

I cancelled my appt with Dr. Murphy b/c we had to pay so much out of pocket with the new DAN doctor. But she will be my next stop if this doesnt' work out. Keep me posted on what she does next with your son after the study meds! Stephanie

I believe my son was 18 months when he first had a pandas episode (sudden onset of severe separation anxiety which lasted for 2 months...wouldn't let me out of his sight, had to be on my hip at all times, hit a lot, cried A LOT!). He got his first positive throat culture a few months later. I did not figure out that his problems all along have been pandas until this past summer. He is now turning 5 next week. He suffered with this for 3.5 years! Stephanie

Scott Smith in Edison, NJ. He is on the Medical Advisory Board of www.pandasresourcenetwork.org and is a DAN (Defeat Autism Now) practitioner. He has tremendously helped my very severely affected pandas boys. They are completely asymptomatic at this point. He does cunningham, titers, throat cultures, etc. He will test for mycoplasma and lyme upon request. He will also do a full immune panel. His two boys have pandas. He does all the traditional pandas therapies (steroid bursts and tapers, antibiotics, IVIG) and he also has other therapies to help modulate the immune system and bring down inflammation. His overall treatment plan is very broad, and in my opinion reduces the necessity of high dose and frequent IVIG. Contact info: www.drneubrander.com scottsmithpa@gmail.com

Thanks, EAMom, I will do that. A PA is a Physician Assistant, similar to a Nurse Practitioner. He has prescribing rights but works under a physician. I was a little leery about working with a PA, but I watched one of his patients (my friend's son) come off the spectrum within a couple of months and I was pleasantly surprised to see that he really knew his stuff. Stephanie

Well, I had my first appt yesterday with our new DAN doctor (had to ditch the first one when he refused to continue abx). I had an appt with Scott Smith, the PA in the practice. He "had" two autistic children of his own (one fully recovered and one not fully recovered), which lead him to become a DAN practitioner. I didn't know this going into the appt, but both of his boys have PANDAS! Also, I was relieved when he looked at my son's ASO and antiDNase titers (which were both negative after positive cultures) and said, "well, some kids don't have elevated titers but that doesn't mean he doesn't have pandas"! Yay! Also, he totally got my level of desperation and he is a big writer of zithromax due to the anti-inflammatory properties, once a day dosing, etc. He also helps to manage yeast which always flares in my son with an abx. He cultured our whole family, asked if we had a dog (we don't). We will get the results in a couple days. Also, he does steroids where needed as treatment and as a diagnostic tool for the usefulness for IVIG. He quoted Swedo's research at multiple points throughout the appt, and I believe that she regularly speaks at the DAN conferences. Sounds too good to be true, huh? After my experience with Latimer's office, I was thinking that we all need someone else on our side b/c she can't do it all! Here's the catch, which I'm not sure really matters in our case quite yet. Here is how he dosed our zithromax: 200 mg for the first 3 days, then 200 mg every other day for a few doses, then every 3 days for prophylactic use (he said that my son is still too young to do the 500 mg dose once a week). I began to panic with this plan (as I feel that my son does best on 200 mg EVERY day), but he assured me that he wants me to call him the minute things go downhill and he will bump up the dose again. So, in the meantime he is going to run some immunology bloodwork and work to improve his immune system. Also, the doctors in this practice are extremely accessible. You need to do your first appt in person but then most/all appts can be done over the phone after that. Also, the nurses are extremely helpful and efficient. They usually return all emails within 24-48 hours (I have a friend who's son has been with this office and she verified that this is true). With all that said, I will come back to this thread and give an update as we get further into his treatment plan. Keeping my fingers crossed! Here is their website, in case anyone is interested: http://www.icdrc.org/ Stephanie

I agree that the naturopaths are not that into the abx. I had to ditch our first DAN doctor recently b/c he would not give me enough zithro. He erred more on the naturopath side, where our new DAN does a real balance btwn naturals and abx. Personally, I would rather not do abx and would rather rely on the naturopath to work on the gut and rely on the "tincture of time" as he put it, but he just didn't get the level of desperation we were at as a family! The new DAN has two pandas kids of his own and he gets it... Stephanie