familyof4

Thanks for your reply - I guess I just need some reassurance that we are still heading down the right path. We are talking about taking a trip east over spring break to see one of the other docs. Based on the outline he posted and my son's "non-standard" presentation it's looking more like Dr T. might be the one to see. I just don't understand why so many doctors want to dismiss PANDAS so easily and not even consider it. My pediatrician is open to the idea that it is PANDAS but she does not want to be the one to treat it.

Today we saw a local Denver doctor who has done IVIG for a couple of folks on the forum. He is not a neurologist but has taken a special interest in PANDAS. It did not go near as well as I would hoped nor did I feel he was as educated on PANDAS as I thought he was. He agrees that something is going on with my son (6) but is not sure we have enough data to say it is PANDAS. He has low to non existant titers. He has had four distinct episodes over 2 years - the first one with sudden onset of tics and rages nobody tested for strep, the second episode which included extreme urinary frequency he was negative for strep but I was positive for strep, his third episode the rapid was negative - culture grew out a different strain of strep than normal but within 5 days on antibiotics he was back to himself, fourth episode was strep positive on the rapid and started with extreme separation anxiety. He has not returned to baseline since this 4th episode in September - he was hit with H1N1 and a nasty throat virus back to back and has multiple tics, obsessions, etc. I think he has a strep carrier in his class at school as he improved immensely while on vacation but was worse again by the 3rd day back at school. I hate to see him live this way and want to treat more agressively. I was told today that since he doesn't culture positive for strep in his throat and his titers are low that antibiotics would not do him any good. That he doesn't have strep so strep isn't causing his current symptoms. (Couldn't he still be battling strep in his sinuses or elsewhere?) Advil works well with my son but when I questioned about the steriods I was told that the steriods work because of what they do to the antibodies not because they have anti-inflammatory properties. I was also told that 1 IVIG typically will "fix" a confirmed PANDAS kid and that data does not support prophalatic antibiotic use either before or after IVIG. It isn't necessary. I was hoping for 30 days of antibiotics to see if it would help my son. What I got was 5 days of zith (1st day at 250mg, day 2-5 at 125mg - wait 5 days and repeat.) From what I've read on this forum I do not think this is a high enough dose (He is 47lbs). I am worried that if we try this and don't see improvement his doctors will throw PANDAS out the window for good and all I will be left with is SSRI's. Do I try this or hold out for a stronger dose of antibiotics?

Thanks for posting this - I discovered that a bottle of chewable motrin I have is part of the recall. I also question if the bottle the school nurse has for my older daughter's migraines is part of the recall and will check on that next week!

So far the anxiety has been the worst part of PANDAS for me. When my previously independent 1st grade child developed severe separation anxiety from strep this fall it broke my heart. (He had never ever shed a tear about leaving me even in pre-school). The sudden overwhelming anxiety at school was the only symptom of the later confirmed strep. The school thought it would be good if I would come in and see him at lunch or if he could call me throughout the day when he needed to. The psych was very clear with me that even though PANDAS was causing the anxiety I could not "feed" the anxiety or it would only get worse. The hardest thing I ever did was put him on the school bus with tears streaming down his face and him holding up "I love you" with his fingers. Luckily he did not physically resist going. I told the school that if his crying was too distracting that he would have to sit in the nurses office all day but that he had to be at school and I was not going to come see him to "cheer him up". He has a wonderful, caring teacher who kept him in the class and looked out for him. Each day he cried less and less - he still tried to get out of going to school - my tummy hurts, take my temperature, etc. This tough love approach was very hard but in the end it was the right thing to do. He is struggling now not so much with the separation anxiety but intense fear of the separation anxiety coming back. You are going to have to be tough in dealing with this even though it breaks your heart. As you have stated your child resists even tiny steps like you moving your further away but they will eventually adjust if you stay firm.

My son does have tics but before they developed we had strange behavior for at least a month maybe more when he was 4. Huge tantrums over things that weren't tantrum worthy, fear or driving on the highway, strong aversions to things he normally loved to eat, not wanting to leave the house or participate in activities he previously had enjoyed. I tried to brush it off as a stage. I mentioned it to the doctors and the neurologist when we had him evaluated for the eye blink tic that developed and not one doctor said anything about it. Looking back I know it was connected to the PANDAS.

Familyof4 - Our ds10 is covered under a 504 plan. I know that every school and administration is different, but it was pretty easy for us. I went in before school started in August and told them about that he was diagnosed over the summer with PANDAS and was not recoved yet. They told me about the 504, they completed the form for me and I signed. I did however have to provide a letter from our ped with the diagnosis. I guess if a family doesn't have a dr that will give them a diagnosis that would be a road block. However, he was only in school for several weeks and we realized that he wasn't able to attend and we decided to homeschool for the first semester. He did return to school last week for the second semester. We are still under the 504 Plan. Until we tell the school otherwise, he will always be under the 504 Plan. Do you have a copy of your 504 plan that you would be willing to share? My school doesn't feel it is necessary until middle school but I disagree. I don't think I would have a problem getting a letter from a doctor. Did the letter from the doctor go into any detail or just confirm the diagnosis?

Fallingapart - my son went from a boy who never would have cried in front of his classmates (unless maybe he was hurt and blood was involved) to crying through days at a time non stop when his first bout of seperation anxiety hit with a strep infection this year. Dr told me we couldn't give in to the fear and that he had to go to school even if he ended up sitting in the nurses office all day. His classmates of course were curious and asked questions and the teacher explained to the class that my son was "really sad" and that he probably would be for a few days and that everyone just needed to give him a little extra attention. Nobody teased him or bullied him and he is still one of the most popular kids in his class. I don't think kids get really mean for the most part until middle school years.

My son is only six, first grade, and still in school for the moment. I believe he must have strep carrier in his class. He has missed so much school this year due to strep/illness. He has made up all missed work at home but went from my kid who was top of his class to hating leaving the house and going to school in particular. Its hard enough dealing with this with a six year old that only minimally understands what is going on, I can't imagine the internal struggles the older kids go through. I would love to get him covered under a 504 plan but have had no luck searching for examples of 504 plans for PANDA's kids. My school is going to be a tough fight on this so I figured the more educated and prepared I am the more likely I will be successful. I recently got a copy of my son's psch reports from the pediatrician. The very first report states "Mother seems hypervigilant". If I wasn't "hypervigilant" I wonder what kind of shape my son would be in right now?!

Interesting that this topic should come up. When I met with the pediatrician last week I expressed concern that my six year old son had been having teenage type body odor. I was told it was being caused by his anxiety and that if he was having adrenal problems we would be seeing much more serious health issues. Well, last night when I put him to bed I noticed that he has underarm hair - it's very fair so isn't easy to spot but a lot longer than the hair on the rest of his body. I'm now wondering if it's precocious puberty and if I should have him seen by an endocrinologist? I'm just waiting for the day someone locks me up for munchenhousen ....

My daughter had a few of her 9 year old friends sleepover a year ago and one of the girls drank immense ammount of water. She came from a very poor family and the parents didn't speak english. I found out this girl also drank a lot of water at school. I thought it could be that the water where she lived didn't taste very good or that she might possible have another health condition like juvenile diabetes. I shared my oberservations with the school nurse and her teacher and was given the "We aren't medical professionals, it's not our place to suggest that something may be wrong" speech. I find that even when I want a teacher to share obeservations about strange or outside the norm behaviors they are usually reluctant to do so. I guess it's because so many parents don't want to hear it. We here on this forum have acknowledged something isn't right and want solutions.

Yep - my son has an incredible memory. We just took a vacation and before we left my son asked if the same baby would be sitting behind him on the plane kicking his seat. He hasn't been on a plane ride in over 2 years! He also tends to be much more observant in addition to his elephant of a memory.

I am also interest in this topic. My pediatrician is willing to do a 5 day burst but not a 30 day taper down as it involves "unecessary risks" in her opinion. It does sound like a few folks have gotten some results with just the 5 day. Motrin works really well for my son so I think a steriod burst would do him wonders.

Have you tried motrin/advil? Within 30 minutes it usually has a drastic effect on my son. TV doesn't work for him - when he gets like that he can't sit much less stand still.

Do you use any motrin/advil with him? When my son's vocal tic developed during h1n1 it subsequently disappeared a few weeks later when we were giving him round the clock motrin for a fever. It came back when we discontinued the motrin even though he was still on really high doses of clindamycin. It finally disappeared about a month later on vacation. You might try to see if keeping him on motrin round the clock for a day or two helps with it.

I read with interest in another post on the forum about problems after a Tonsilectomy. Someone responded that anesthesia can impact the blood brain barrier. I was horrified when I read this. My son has been put under for various procedures 6 times before the age of 5. First PANDAS episode was at the age of 4 1/2. Could being put under so many times left him exposed to PANDAS? I forsee at least two times in the next year that he might have to be put under again, (Another upper endoscopy and tooth extractions). I am wondering if I should be avoiding this at all costs? When I met with my pediatrician last week to let her know I wanted to start treating this more aggressively I brought her tons of info on PANDAS. When I mentioned the BBB she said "That closes by the age of 2". She watched the video I brought her of my son and said "I don't know about the PANDAS diagnosis anymore - it looks like a movement disorder." UGH!! I have not yet done the Cunningham bloodwork - my pediatrician really wants it to verify PANDAS. I am not sure the $400 we spend on it would alter treatment plans in anyway so I am hesitant to spend the money. She is only willing to entertain a 5 day steriod burst and 30 days of antibiotics at this point. Saying anything else is too risky. We are meeting with Dr. Smith in Denver for a consult on the 18th. Depending on how that goes we will either start treatment of some sort or we might end up flying east over spring break to see either Dr K., Dr L., or Dr. T. I would think a 30 day steriod taper down and prophalatic antibiotics would be less risk than IVIG. Is it going to do him any good to do IVIG and not have him on long term antibiotics?

Age 4 - Driving on the highway, Bugs/Insects - Flys and Ants especially Age 5 - Any bathroom except one particular one in our house, raccoon figurines at Grandmas house Age 5, 6 - Anyone seeing him without a shirt on. Leaving the house. Given a choice he would never go anywhere - including fun places. Once we get him out of the house he is usually okay for the most part. Not sure what this is rooted in. I know he hates to get dressed - prefers to be in pjs and I think thats part of it. He won't wear any pants/shirts with zippers or buttons or snaps and no denim. It's worse if we stay home for a few days and don't go anywhere. We are better off making sure he gets out everyday or the fear really takes over.

My son never had ear infections but he had such a severe sinus infection (with no symptoms of a cold or runny nose)that he had a seizure at age 22 months old. Confirmed via CT Scan. He has subsequently had many other sinus infections. Because of his sinus issues we do nightly nasal washes and use NASONEX. I have lately started questioning whether or not I am introducing bacteria and more PANDAS flares with the nasal rinses. The first PANDAS episode that we know of was at age 4.

Harmony - your life sounds like a mirror of mine. My husband works / travels so much that he was very out of touch with the family. He saw the rages as me not being tough enough with discipline. So I would let him handle a situation and it would get so out of hand that my son would end up ticcing like nuts for hours after and my husband in tears late at night that he was too hard on him. I really thought we were headed for divorce. It's hard enough to handle a kid with PANDAS let alone not have support from your spouse. Luckily my husband finally got on board. His family never discusses medical issues and is in denial that anything could be wrong with any member of the family - and if something is wrong keep it to yourself. Thankfully my inlaws are finally on board - At my son's first grade concert my father-in-law asked why his grandson was wiping his nose, tugging at his shirt and pulling up his pants. My mother-in-law replied - "He's ticcing". I wanted to jump out of my seat and dance - they finally "get" it. One thing that helped with my husband (also not the observant type), was to point out some behaviors, give my son motrin, and point out the difference. Hang tough. I know what you are going through.

My son who has PANDAS does the face hitting thing. My daughter, who is 9 and never had PANDAS symptoms that I was aware of, started this mouth opening thing this fall that almost looked like a slow motion yawn. When I finally pointed it out to her she said "Yeah my friends have commented that I do it a lot". I asked her why she did it- she didn't know. I asked her if she had control over it and was able to stop in about a week. She has never had strep to my knowledge.

The local doctors agree that my son has PANDAS, I am just having trouble coming up with a reasonable treatment plan. He is allergic to all cephalosporins, in addition to augmentin and amoxicillin. When strep is confirmed they will treat with 2 rounds of zithromax. Last time we saw a different doc in the pediatricians office and she put him on Clindamycin. My ped was appalled as she was saving the Clindamycin for when we "really" need it. She is afraid he will develop more allergies and we will no longer have any antibiotics he can tolerate. Does anyone else have a similar problem with allergies to antibiotics and how are you treating the PANDAS? I hate to put my son through IVIG if he is just going to get strep again and go right back to where he is. I really think a longer term does of antibiotics might get him back to baseline. We also have not tried the steriod burst yet. At this point we are contemplating flying to a PANDAS expert over spring break - still not sure which one. I know we have a doctor here in Colorado that will do the IVIG if that is the way we decide to go. I just feel like we need a treatment plan from an expert. I know my pediatrician will follow the plan if it comes from an "expert".

Hi, Does anyone have a sample 504 plan that they could share with me? My son, 6, has missed a lot of school this year. Although these absences have all been covered by a doctors note we are getting "warning" letters from the school district. The last thing I want is to be hauled into truancy court. Won't having a 504 plan in place help give us a bit of "protection"? Additionally, his music teacher graded him extrmemly low with comments like "lack of effort" and "absences are impacting his grade". I am trying to set up a meeting with her. At his concert last night it was apparent that his motor tics are causing issues for him in music - It is hard to keep in rhythm, do the hand motions to the songs, etc when you have to tic so frequently. The rest of his teachers gave him above average grades. I have talked with our principal and she is willing to sit down and discuss a 504. Earlier this year when I mentioned it, I was told by the school nurse that he would need one for middle school but that it wasn't necessary for elementary. His main issues at the moment are motor/vocal tics, "fidgetiness", and anxiety. He has an IHP (Individualized Health Plan) in place at the school that covers his celiac's disease, pancreatic insufficiency, and notification to me of Strep in the school.

Char, After a round of strep followed by H1N1 we ended up with our first vocal tic which was a throat clearing noise just a couple of weeks ago. I felt so helpless at that point not to mention the constant noise got on my nerves. I knew he couldn't help it but still it grates on me. After it looked like it wasn't going to get better on it's own as he healed from the h1n1 I was prepared to take him in to get titers drawn (which have never been high) and beg for more antibiotics. Instead he came down with another nasty virus. We are still dealing with the virus but got 10 days of a high dose of clindamycin. After day 3 on the antibiotics the vocal tic is almost totally gone. If possible I would up the antibiotics if it won't conflict with the steriods. I totally feel your frustration and despair. Heather

My son is now six and had his first episode at age four with an explosion of tics. He did see a neurologist but PANDAS was not even considered until he had his second episode just afer he turned 5. Although his doctors were open to the idea it might be PANDAS, it was not confirmed until just recently when he had extreme behavior changes and a positive strep test with no other symptoms of strep (his throat wasn't even red). I knew what it was but it is nice to have his doctors on board with me!

We have had a rough road since September. It started with strep and 2 rounds of Zith followed by H1N1. He developed a vocal tic to add to his anxiety, motor tic, and mild ocd. I was going to go in next week and ask them to draw titers to see if he still has strep hanging out somewhere and to try and get more antibiotics. We are not on antibiotics full time due to my son being allergic to most of them. Well he woke up two nights ago screaming about his throat and hitting himself in the face. His tonsils are HUGE and covered with pus. My pediatrician is out this week so we saw someone else (who thankfully has some knowledge of PANDAS). Rapid strep was negative. Doc came in and started telling me how it was viral and she didn't want to do any bloodwork and that I would have to come back next week to have his regular pediatrican draw the titers. Then she looked at his throat and did a total 180. She drew 8 vials of blood and started him on a dose of Clindamycin that was so large the pharmacy would not fill it without talking with the doctor. The rapid mono and CBC were run stat. The mono was negative but I understand the rapid test is unreliable in kids under 10 and is never run on kids 5 or younger. My son is 6. The counts in the CBC make this look like it is viral and not a bacterial infection. We will not get the results of the strep or mono titers until later today or tomorrow. Same for the strep culture. His ESR was within normal range. I did get her to run an immune panel including the Igg subclasses and am interested to see what those results will be. We ended up at urgent care last night as I am having a really tough time getting any fluids down him, his fever got to 104 and he was very disoriented. (It is pretty scary when you ask your kid if he knows where he is at (we were at home on the couch) and he says Heaven. He is not doing much better today although I have got him to eat a popsicle this morning. I have never seen a throat look this bad. Has anyone used Clindamycin for strep/PANDAS? It has nasty warnings that is can cause C. Diff. The doctor told me to be sure and give a probiotic with it. Even though this looks viral I am thinking I will keep him on the antibiotic to see if it will help with the PANDAS symptoms. Has anyone on this board had any experience with Mono in a PANDAS kid? I just want to get him healthy and try to get things calmed back down for him. He only seems to hit himself in the face when the pain gets really bad but if I hold his hand to prevent him from hitting himself he does this leg jerk thing instead.

We have had the whole range of frequent urination issues. With some of his PANDAS flares it was a nighttime thing from the time we put him to bed until he finally fell asleep. At it's worst it was every 3-4 minutes throughout the day and kept us totally housebound. I am leaning toward it being OCD and not a tic but I can't say for sure. We did have him checked out and it is not an infection or medical issue. As an aside, my mom complains that she can't take zyrtec as it makes her have to go pee every 30 minutes. If you could try benadryl or something besides zyrtec to see if it helps relieve the urination issue I would. Heather