familyof4

My son also has a spot on his MRI - the neurologist didn't want to do an MRI because he knew it would come back abnormal. Once you see a spot on an MRI you are suposed to repeat the test after a year to make sure nothing has changed - that is routine. My son's white matter was in the periventrical region of the left frontal horn. Talking with the neurologist he said these spots are common and consistant with a patient that has an autoimmune disorder. Since my son has Celiacs as well as now PANDAS I wouldn't be suprised to maybe find more now if we repeat the MRI which we haven't. He was also a preemie which can result in white matter although not in the location my son has his.

My son was very colicy as an infant - we knew something was wrong but couldn't get anywhere with the doctors. My daughter had severe food allergies and celiacs so we started down that route with an allergist. He had allergies but they were pretty mild and avoiding those foods never helped. I finally took pictures of his diapers to show the allergist - what I thought was mucous in his stools was actually malabsorbed fat. We were sent to a pediatric gi. It took several tests - endoscopies, etc. But it was finally a stool test that resulted in the pancreatic insufficiency diagnosis. Then we had another slew of tests to rule out Cystic Fibrosis and Schwachman Diamond Syndrome. Starting on pancreatic enzymes made a night and day difference in him. To this day the doctors can't say why he has this problem - my pediatrician was told she will never see another case of this in her lifetime and that he is the 1% they just can't find the cause of. We were also told he would out grow this by kindergarten. The GI has finally admitted he thinks my son will be on enzymes for life.

Wow - So much to research. I haven't read all of the links yet but did want to share that my PANDAS son has Pancreatic Insufficiency and has taken prescription digestive enzymes since he was finally diagnosed as a toddler. He produces little to no enzymes on his own.

Your case sounds very similar to mine. My son started a severe eye blinking tic at age 4 1/2 . We saw both a pediatrician and a neurologist. The neuro told us it would not go away and he would likely develop more tics. The neuro did point out that he was suprised he couldn't pick up any subtle tics in me or my husband as usually he can see it in a parent even if they don't know they have a tic. My son had some counting behaviors but these were dismissed as a stage he was going through. 6 week later the tic diappeared. 6 months later I contracted strep and over night my son exploded in tics and frequent urination issues. He was strep negative at the time. At age 6 my son tested positive for strep for the first time - our only clue was the sudden overwhelming separation anxiety that popped up from out of nowhere. He also started with his first vocal tic, lots of obsessions and lots of counting. (It took him 104 bites to eat his dinner one night - we had no idea he had been counting this!) Later I learned that when his eye blink tic started - strep was going around his pre-school. With each exposure my son has had, his symptoms have been worse than the time before and harder to get to go into remission. Advil makes a huge difference for my son. He also responded well to high dose antibiotics during his first few episodes less during the last and worst episode. If your pediatrician is openminded I would test for strep and titers (although my son's are low) and try a course of antibiotics, (refer to other threads on this forum as to which ones work best) and see if you think it makes a difference for your son. Good luck! Heather

Thanks for posting this. You've added one more thing to my list for the doctor when we go in a couple of weeks. My son had a sinus infection that was so bad as a toddler it resulted in a seizure. Now at age 7 he still does nasal washes 2x a day. I noticed a drastic decrease in PANDAS symptoms when we started him back on Nasonex. I too question if his sinusus aren't the root cause of his PANDAS. It will take some effort to convince his pediatrician to order a CT on his sinusus (she hates to expose him to the radiation) but I think, especially after reading your story, that it would be prudent. Thanks for sharing - you've no doubt helped dozens of other PANDAS kids with your post.

fiveam - I sent you a message!

I too have this same problem. I am very open with people about my son's condition. My son has been in a moderate flare up for the past two weeks with increased tics and anxiety. He recently joined a new soccer team with mostly kids he doesn't know. The first few practices were fine and then he started having this flair and he cried a lot during the next two and complaining that his stomach hurt (it was clearly anxiety caused). He was also having anxiety issues at school. My husband tends to get hard on him and tell him to dry it up. I also make him continue practice but I take a more sympathetic approach and try to boost his confidence. My husband pulled the coach aside to talk with him the other night. At the same time I was talking with some moms and sharing a bit about his condition and found out that one of the boys on the team had just started antibiotics 24hrs before for strep. My husband on the other hand didn't say anything about PANDAS to the coach - only that my son was having a hard time "adjusting" to his new team. I wish my husband would have been more open. Every practice since that day my son has been fine and I really think it was 90% PANDAS related.

Can you PM the name of the Lyme doctor you are seeing in Denver? Heather

Wow - we get the red ears here as well - I am sure it is food related but never was able to figure it out - bet it is the Salicylates. I thought it was dairy but taking him off of dairy didn't help.

We too are a member of the group with classic PANDAS symptoms and non existant titers. The last time my son had strep the only symptom he had was extreme separation anxiety that sprang up out of no where. No classical symptoms - stomach ache or sore throat. We've checked titers 2x and probably won't bother again.

My son was officially diagnosed with cyclical vomiting when he was 3. He actually started the vomiting as an infant. I have not been able to connect it with PANDAS. He was 4 when he had what I think was his first PANDAS episode. At 4.5 after 9 weeks cycle that wouldn't break, we started him on L-Carnitine and Natural CoQ10 (not the synthetic form commonly sold) and it has basically kept the cyclical vomiting under control. (Both meds are used to treat mitochondrial disorders which they think Cyclical Vomiting may be related to.) When he had a cycle his GI tract would basically shut down. He would just bloat and bloat for hours and then everything would come up undigested. He would have to be in the hospital on IV's for a week until it ran it's course. After he was diagnosed we had some luck aborting cycles with very high doses of Zofran. Usually CVS (Cyclical Vomiting Syndrome) is associated with a family history of migraines. Not so in our case except my older non pandas daughter gets bad migraines. CVS is another medical problem I wouldn't wish on my worst enemy!

I went into labor with my PANDAS son at 28 weeks - had 1 mag treatment and was on Terbutaline and Niphedipine every three hours around the clock until 36 weeks when they took me off - he was taken emergency c section as he was breech.

This was a really tough one for me as my son never had separation anxiety until he got strep this fall. We were told that it didn't matter that the anxiety was medically caused - you can't "feed" it or it will just get worse. Sending him to school knowing he was going to be a wreck all day was so hard for me. Thanks to a very understanding teacher we made it through one day at a time and the crying got less each day. It took months before my son got up and went to school without telling me he was too sick to go, wasn't going to get dressed, etc. Even after that subsided he still would tell me how much he didn't want to go but would go without a battle. The separation anxiety is gone - the problem is the intense fear that this feeling will come back - that he will get the separation anxiety again. Take things one small step at a time. First step for us was just to have him at school. Next step was to have him at school and be somewhat okay with it. Having him learning again and catching back up was several steps down the path. We have to make sure we don't go days in a row without leaving the house to go somewhere or it becomes harder for him. Even if strep is causing the problem I feel I need to push him a bit to brave those fears - I could see my son growing up into an adult that is unable to step outside his house.

Thanks for the info on Omega 6's. I just found MorEPA Smart Fats at Whole Foods and was thrilled that it had the 7-1 EPA / DHA Ratio - 580mg EPA to 80mg DHA. However it does conain 45mg of Omega 6 so I'll probably start looking for something else instead.

In the past my son has reacted when I had strep even though his test was negative so I think he just has to be around someone with strep to have a reaction and not even have to have the infection himself!

I can say that we have spent hundreds seeing doctors that do believe in PANDAS but don't have the knowledge or experience to treat it. At this point, even if not covered by insurance, I think we will be money ahead seeing one of the top specialists to get a concrete diagnosis and treatment plan. Additionally, it may work to your advantage to call your insurance company and talk with them. If they can not come up with a suitable doctor within your plan that has experience treating PANDAS you might get them to cover your visits to a doctor not typically covered. It worked for us when we were trying to find a pychiatrist.

Poster name: Heather Location: Denver, Colorado Childs year of birth/present age/gender and weight: 2003 / 6 / Male 43lbs Brief history of symptoms/when they started: First noticable symptom was rapid onset eye blink tick at age 4 1/2 Any previous diagnosis, i.e. autism, asbergers, pdd: Previous diagnosis of Pancreatic Insufficiency, Celiac disease, Cyclical Vomiting Syndrome, Frequent Sinus infections, mild food allergies PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.) Tics both motor and vocal , Anxiety - Separation Anxiety, Unwillingness to leave the house, OCD - Mild to moderate includes counting, schedule preoccupation bathroom rituals, Rage - moderate but quick to flare and tantrums over things not tantrum worthy, Urinary frequency with one episode Results of any testing done: i.e. Aso & dnase, strep results (always positve? always negative swab, but Positive culture?, immunology results, etc. ASO - 11 DNASE-B AB <60 IGA - 34 range (33-235) IGG - 615 range (592-1723) IGM - 72 range (36-314 IGG1 349 range (288-918) IGG2 160 range (44-375) IGG3 71 range (16-85 IGG4 1.9 Range (0.4-98) IGG serum 604 (Range 592-1723) Only swabbed for strep during last 3 epsiodes - First was negative but mom was positive for strep, Second episode culture grew out Strep B, Third rapid was positive for strep Camk number (if done) - Not yet done Antibiotic use history: - Has responded very well to Azithromycin in the past. Not on continous antibiotics due to allergies and Drr's unwillingness Doctor and what protocol they suggested: **(names of docs optional, type of doctor is however, helpful) Other doctors that were helpful and why: (again, name optional, just name type of doc or initials.) Pediatrician is still on fence, has seen a neurologist in past for CVS and tics, has seen a neuropsychiatrist as well to rule out other conditions. Steroid trials and detailed experience: Not tried yet Special section on those persuing IVIG or PEX and what the details were, updates could be added here too. Additional therapies sought: Supplements used: B50 Complex, Chewable Multi vitamin w/ Iron 3x daily Meds used: Ultrase Mt 20 (for Pancreatic Insufficiency), Lcarnitine and CoQ10 (For Cyclical Vomiting), Zyrtec, Nasonex and Nasal Washes for Sinus issues. Advil also really helps the tics and behaviors Any 'other' pertinent info: (anything else anyone would like to add or have info on.)

I am RH negative and did get shots with both pregnancies but I thought they were post delivery not while pregnant - can't remember though. My PANDAS son is the second child.

My son got head to toe hives with Augmentin. He handles Azithromycin really well though so I would ask to switch antibiotics. You could also give the Augmentin with an antihistamine like Benadryl. It will probably make her sleepy but will make her itch less. Just be aware even if you change antibiotics it can take days if not weeks for the hives to go away even if it is the Augmentin causing it.

Although I answered that my son had tics prior to PANDAS the sudden onset of his tics at age 4 was likely his first PANDAS episode that went undiagnosed. 1.) Was your first (known manifestation a sudden onset? YES 2.) Was the initial onset during or following what you thought was a cold/virus/flu, etc? NO 3.) Is there family history of tics/ocd, etc? NO 4.) What is your (and/or your spouses) occupation? My husband is a computer scientist and my degree is in Statistics and Math. My pediatrician thinks the only relationship between PANDAS and the occupations of the parents has to do with the fact that more educated people are not going to settle for a diagnosis of TS or OCD or Bipolar - they are going to seek out answers. She believes many more kids probably have this that have been diagnosed wrong but the parents just accept what the doctor tells them. 5.) Do you have more than one child that you feel has PANDAS or has been diagnosed wit PANDAS? No

It really takes an upper endoscopy and biopsy to conclusively diagnose celiacs. The blood test can be an indicator but it takes the endoscopy to know for sure. And yes, you do have to be eating gluten to have the tests done.

I too am interested in this. How many folks are talking it daily vs every other day vs vs 5 days on 5 days off, etc?

National Jewish is great but it will be expensive as they typically bill as a hospital - we have been to them for many other issues - not PANDAS though. My son already is seeing a phsychiatrist that we like (in Thornton). My only question that I think you need to ask National Jewish is if they treat PANDAS with any other protocol other than neuropsychiatric drugs. I do know that they are at least familiar with PANDAS. If Dr. Bernard is the Children's Hospital Neurologist who is listed on the saving Sammy facebook page then I would proceed with caution. I called and asked his nurse if he was familiar with PANDAS and was he taking new patients. The nurse called back later in the day to let me know that the doctor had no interest in treating PANDAS so we did not go see him. I am at the point I am tired of throwing money away on doctors who either don't believe in PANDAS or are not educated on how to treat it. Heather

We had several motor tics before a vocal tic showed up. The vocal was a throat clearing and much worse when eating. 2 things made it go away - round the clock advil made it disappear but it came back when we discountinued the advil. Getting away - we went away on vacation for 10 days and with use if Advil it was gone by the end of the trip. I think this worked because he is getting strep exposure from someone outside the family (suspect a carrier in his class and also extended family who sees him often.) I am happy it is gone as it grated on me big time but I know he couldn't control it. I often wondered with it worse while eating if it was a compulsion of some sort that he had to do it so many times between bites of food.

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