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Everything posted by vermontmoms

  1. Same here...I am not sure if the daily intense swimmimg helps or the daily exposure to Vit D helps reduce tics. But something helps b/c he is totally different during summer swim team. That said we don't see as much affect during winter club swim team so I really think it is the increase in Vit D.
  2. Where do you live in Delaware? We saw a great Ped near Rehoboth...is that close?
  3. Kim- Where do you live? If you live near MD our old Ped knows about PANDAS and is willing to do a 10day trial. She will also order any blood test you ask. She is very willing to learn and help. She is at Clarksburg Pediatrics in Clarksburg, MD. Dr. Rahman is her name. Hope this helps! Jen
  4. I am reading Dr. Ken Bock's book called healing the 4 A's (allergies, asthma, autism, and ADHD). He has a great chart in the book; if you can find it at your library I think you would find it helpful. He recommends being off Dairy for at least 3wks and gluten for 3mths. Then you add one new item back and wait two days before adding something else. Have you had any allergy testing done yet? I would recommend you see an immunologist. Tics could be increased b/c of grass or pollen allergy.
  5. I am usually on the PANDAS group but have also been on this group b/c one of my twins were dx with Tourettes at 4.5yrs old. At age 6 both my twins were dx with PANDAS so I switched to that board primarily. The reason I am here is b/c at age 8 my son again received another TS dx from a new neuro. But shortly after we saw an immunologist and that doc feels all my son's TS issues are caused by his immune system attacking his neuro system. This is due to the fact my son has severe IgE allergies to almost everything plus he has at least one autoimmune disorder. So my question is: Do you think Tourettes is a true disorder or do you think the motor and vocal tics are just a symptom from a more severe or complex disorder or from a nutritional disfunction? I guess I am asking b/c I am upset with our new neuro. The fact that she pigeonholed my son's dx and said it was TS and that was that. Now come to find out after 30 vials of blood were taken it appears my sons tics are caused by something so much more complex. I am upset that most neuros don't ever stop to ask WHY is the child is having TS symptoms. They just say it is TS and here are some meds I can give you if you like. They never even ran a blood test!!! They based their whole dx on history, videos, and initial presentation. So what do you think is TS a disorder or symptoms of a more complex issue? Thanks for your input! Jen
  6. My boys both have been dx with PANDAS. I would get your son to an ENT and have the doc look at your sons tonsils & adenoids. I would also ask that they do blood work for strep (titers and swab) and also test for mycoplasma, lyme, & bartonella. If any came back elevated then do a trial of Zithromyocin. If you see a reduction in tics then I would consult a PANDAS doc for further eval.
  7. Has anyone heard of the studies be done on this and if yes can you link some. At the docs yesterday they said that this new research is having a major impact on the movements of parkinsons. They are doing some ultrasound therapy on the brain. I wonder if it would help kids with movement disorders. Thanks for any help you have about these studies..
  8. Thanks!!! Funny thing is I just picked up this book today at our library! Along with 5 others on allergies and immune system. Great minds think alike!!!
  9. He was on it but stopped in Dec. I am not sure where the hearing loss came from but in all the studies it seemed like it was a progression (ringing in ears, faint noise, etc). Even then it was a very rare occurance. My son never had any symptoms like this and it was only caught at a school screen. Thanks for mentioning.
  10. Thanks!!! Honestly, I feel so much better just getting it all off my chest. I don't have any answers yet but I know we will get there. I am not going to accept "I don't know" as an answer; I will keep looking until someone answers the "WHY." I hope you find out some useful info today. Our doc was great, so thorough and comforting. Thanks again for the response! Jen
  11. Ok, the first part of this is going to be a vent. We have been in and out of the childrens hospital with our son the past 2 months. Our son all of the sudden has severe hearing loss in his right ear (very close to needing a cochlear implant). His ENT ran tests and they thought they found a tumor. After 2 more referrals (neuro/oncology) they determined that my son's sinus is malformed and it is not a tumor. The ENT said we may never know why my son has sudden severe hearing loss. THIS IS NOT OK WITH ME! Next we meet with Neuro and she says that my so has TS/ OCD and sensory issues but she asked us to get an EEG to rule out seizures. She said PANDAS is a different philosophy than hers and basically blows that dx off. She also said she would recommend psy drugs. NO, NOT TILL YOU TELL ME THE CAUSE. She can't and says it is what it is and that the only treatment is meds. So we leave. Finally I scheduled an appt with Dr. Melamed (immunologist/allergist). Our appt was today; he said that on a scale of 1-10 for allergies our son is a 12. He is taking 30+ vials of blood over 3 draws and running numerous tests on our son. He said that when a child has so many allergies it shuts off or causes a malfunction in ones immune system. He also said couple that with repeated strep/scarlett fever and myco infections and you get a child like my son (tics, ocd, sensory, and hearing loss). He said that my son's immune system is so compromised that it is like giving the strep bacteria a master key for all areas in his body to wreak havoc. In 3 wks we will meet him again and discuss all the results and treatment plan. So far we are thrilled with him! I am so thankful we are getting some answers. He is 90% sure my sons hearing loss is directly related to his infections. So now back to my rant....how can doctors justify giving you a "deal with it b/c i don't know what is wrong" diagnosis and telling you it is life-long. The thing that pisses me even more is they saw inflamation in his sinus and in his nasal areas and blew it off. Never referred us for allergy testing, never tried to seek an answer to the WHY question. They just tried to give us band-aids (drugs and a hearing aid). It burns me up!!! As soon as we have more answers I am calling both docs and letting them have it! I can only imagine how many people take their dx as the end word. Anyway, have any of you had PANDAS kids with severe allergies? If yes, what do/did you do? How have you treated such a frail immune system? Is IVIG something we should look into? My head is spinning in two diff directions...one way from sheer frustration of doctors and the other way for all the new info this new doc provided. I just feel like we are running a marathon! And to top it off my father-in-law died this morning so we are dealing with a of those emotions too. My spouse is flying out on Thurs for the burial so it will be just me and the boys till Mon. Speaking of the boys...we haven't told them yet b/c our son was not happy with the news today about all his allergies and he was not in a good mood after we got out of the appt at close to 6pm. My spouse and I have to figure out how to tell them (he lived with us till a few wks ago but all his stuff is still in his room). Either way it won't be easy! Well, thanks for listening!!!! We would be so appreciative of any insight you can offer! This is new territory for us so we are so overwhelmed...on every level... Thanks again!!! Jen
  12. What is this exactly? I have seen it mentioned but am unsure what it is. My son is meeting with a new immunologist and I would like to go in armed with possibilities. Thanks for explaining! Jen
  13. Does this group have a place to upload photos? I am talking to another parent about a rash and would love to be able to upload a picture of my son's rash. Just curious if anyone knew how or if we can upload photod to this group. Thanks! Jen
  14. Ok, you all have heard me talk of my one twin but his twin bro is who I am wondering about tonight. My son has had direct contact with a peer at school which happened to be his partner for a research paper. Well the little girl was dx with strep last Wed. My son started hair twirling last week and cannot keep his hands out of his hair. He is also so fidgity I can't sit on the couch with him b/c he is just in constant motion. Part of it is he is a new drummer (taking lessons) so he beats on anything but he is 10x worse this week. He hasn't started his finger sniffing again but I swear that is b/c he is twirling his hair constantly. The Thurs before all this he had a major meltdown and was pulling his hair out and hitting his head b/c he didn't have his daily work done and was worried about losing free centers. My boys missed a few days b/c of my other son's neuro appts. So should we get a swab done on him? Are his symptoms coming back b/c of this exposure? Thoughts? Thanks, Jen
  15. We are doing testing on Mar. 6th. My son is having several PANDAS symptoms so for us it won't hurt even if it causes a bump b/c our road is already bumpy. I am hoping it will shed some light on his symptoms and all the bumps/rash on his face and arms. Good luck!
  16. My son had 4 kids in his class out yesterday. One tested + for strep 1 didn't and the other 2 are unknown. My son came down with fever lsst night is 101.5 this AM with sore throat. We are on way to peds... If he comes back positive I want to try Aug XR. I am concerned that the zithro could have caused his sudden onset hearing loss so we don't want to use zithro. He has also been exposed to strep 3 other times since we got back from xmas break and has been in exacerbation since Nov. I am ready to hit this with a strong abx. What are your thoughts? If he is - for strep would you still ask for abx (he has been off them since Dec 12th)? Thanks! Jen
  17. Thanks! Have any changes happened since Jan 2011?
  18. Has anyone's PANDAS kids had positive strep rapid tests but ASO titers stay low?
  19. Why do you think my child is different from your PANDAS kiddo? no no -- sorry - i must have worded it incorrectlly. i didn't mean i think your child is different from mine -- i didn't mean it as an opposing thought. just that with mine, that i believe is heartily, heavily infection induced which results in behaviors outside of his control -- as we work toward medical health, i also feel we needed/need coping mechanisms to deal with the fallout from it for all of us. i do believe getting to the root cause of it is of prime importance to funcitoning and continued health -- while that is happening, i think it is also important to have coping strategies to weather the storm and to try to not pick up additional disfunctional patterns . so sorry -- i didn't mean to offend or confuse!! You didn't offend so don't worry...I am just trying to figure this PANDAS stuff out and honestly I am wondering how to really KNOW it is PANDAS vs Tourette's/OCD, etc, especially when they can look the exact same. I guess I am just spinning b/c another Ped Neuro gave us the TS/OCD dx and told us PANDAS is highly debated and controversial. How do you know your child is "classic PANDAS?" What is "classic PANDAS?" Honestly, that is what I need to find out and the reason I asked. You said you feel my son has a neurological/biochemical pattern/issue. Are you saying your son does too or that from my posts our kids present differently? Does yours present like Saving Sammy (mostly OCD)? How does one know if it is a biochemical imbalance? Is there a blood test and if so what do you test for? Thank you for your help...we are chasing every avenue right now to try to rule out what it isn't and if there is a test for the above then we would like to run it to see if he has a deficiency. Thanks, Jen
  20. Great Post! I did edit it some so it wouldn't be so long...but to clarify, my son's issues are not disorganization; he has a bench seat that stores his basketball, it also has a basket for his gloves, hat, and a hook for his coat. His shoes are in the closet on his shelf which is clearly marked, etc. My son's issues with getting out the door was about tying his shoes and not tucking them into the velcro part and having it too loose, he was for sure it was going to come untied. He was stuck on this for 20+ mins and was crying hysterically about how it was going to come undone. Even after my SO showed him it was in a double knot and was not going to come undone. He kept pulling at the knot saying over and over it is too loose. It is not on right, it feels wrong, etc. To me this is very OCD type behavior not typical disorganization or pressure from being hurried to get out the door. I understood what you meant in your first post but your explanation did help tremendously. Thanks, Jen
  21. Our son is currently in an exacerbation for sure. There have been 3 kids with active strep since the second week of Jan. I just got a call from the school today and 4 kids are out today and 1 has tested positive for strep. My son's tics/ocd behaviors have been WAY more active since Jan. He still can't do simple math and is unable to retain any multiplication tables he is currently learning in 2nd grd. In addition, to the strep...he is also dealing with sudden onset of severe hearing loss in 1 ear. The docs do not know what is causing this hearing loss but they do know that the auditory nerve is not responding to sound. He will do a trial hearing aid next week. He is also scheduled to have an EEG to rule out seizure next weeks b/c his tics have changed and are more tremor now. Now about his triggers...honestly, some of his triggers are sensory (clothing feel, shoe too loose, temperature changes, etc.) but he has several OCD too (ie. time exact, if you say I will be there in 2 secs he takes it literal and will set off a trigger if you are even a second late. He gets stuck on the time and can't let it go. He also has to have his shirt sleeve exactly on 1/4 of an inch out from his coat sleeve, or have his blankets tight against his neck with zero wrinkles...all which are major triggers) That said, most triggers happen b/c of inflexibilty b/c his brain gets stuck on something and can't let it go or get past it. He will dwell on it for 30min to an hr till he is so worked up. We are looking into therapy locally now to see if we can find a way to cope with his inflexibility. I am also looking at therapy swings b/c being in tight spaces (ie. undercovers) helps calm him. Thanks! Jen
  22. Can either one of you (Dedee/DCMom) send me the contact information for this USF center? We are planning a trip to FL in June and would love to see if we can get in to their clinic. Thanks! Jen
  23. Why do you think my child is different from your PANDAS kiddo? I guess what I am asking is, what is "classic pandas"? My son had all the CAM K testing done and has has numerous strep infections and scarlett fever. His CAM K was in the high range for PANDAS and his anti-neuronal value was more than 2x higher than the norm on anti-dopamine 1. My son had his first strep infection of April of 07 and his tics and OCD started two weeks later. We never did a follow-up test to see if the antibiotics got rid the initial infection, which we should have... So how does my son's case differ then "classic PANDAS?" Personally, I was told by Kathy Alvarez that kids with extremely high values on the anti-neuronal value for anti-dopamine 1, have a high probabilty for tics. Please explain as I am still learning and trying to wrap my head around this whole PANDAS dx. Thanks! Jen
  24. You are correct, these are not tantrums they are meltdowns. Yes, we had his myco checked last spring by Dr. L and it was high/elevated for myco. I don't know how long he has had it or that it could cause rages. Thanks for the heads up!
  25. Ignore...double post but don't know jow to delete post...sorry
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