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Everything posted by familyof4

  1. 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
  2. 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 a
  3. 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.
  4. 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
  5. 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
  6. 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 sympathe
  7. Can you PM the name of the Lyme doctor you are seeing in Denver? Heather
  8. 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.
  9. 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.
  10. 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. H
  11. 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.
  12. 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
  13. 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.
  14. 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!
  15. 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
  16. 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,
  17. 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.
  18. 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.
  19. 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 t
  20. 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.
  21. 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?
  22. 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 wa
  23. 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 oft
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