TessaKrista

Pizza, cows milk, and cheese are all bad news for my little boy.

My son's pediatrician said that young children aged 7 cannot have sinus infections because of the way that their sinuses are made. He is always stuffed up though. He has a diagnosed allergy to dust mites and mold.

Debbie, I am sorry for what you are going through. I am in pain too from what I have seen from my little 7 year old son. I have hit a real depression, because my once normal boy has changed. It was as if he was on top of the world, doing public speaking, drama, reading liturgies at school, winning contests, and then he started turning his head from side to side, stretching his mouth, and shrugging his shoulders. I kept thinking: the higher they climb, the faster they fall... because he was the number one kid at school, winning all sorts of contests because of his abilities, and then boom...he suddenly changed. When doing homework or reading, he would turn his head repeatedly, as if that was a stressor for him. The shoulder shrugging did not seem connected to stress. Like you, we had put a lot of pressure on him to do all of these things, like a piano recital, composing a song for piano class, practicing and memorizing all of these readings for school, and generally involving him in a lot of extra curricular activites. The week right after his "great" award time, he was suddenly hit with a throat infection and fever. He had been up very late the week before because of choir and all of these crazy activities that kept him up. Also, I had let him stay up late, which was a rare thing. He was upset because of all the pressure we were putting on him to know his lines really well, and he would often say "stop I don't want to do that anymore". I have it all on video. So...staying up late, putting pressure on him, winning at all sorts of things, then...getting sick.. that was it... my son suddenly changed. Just at the end of April, all of May and most of June I have been just devestated by all this. It has been really hard to function, yet I have. My husband has asked me where his wife is, because I don't appear present, and I told him that I was depressed. I cried every single day. Not just cried...totally totally bawled. I would go to work with the thought of my son in my head. I would cry in the car on my way to work, I would quietly have tears at work, and I would just let it all out in the car on my way home. I had always spent a lot of time with my son, but now I spent all my spare time with him. I appreciated him even more. I pulled him out of almost every program, and kept him in what he likes, which is soccer. My heart sank when I took him to a live play, and he kept turning his head from side to side. I was totally devestated. What had happened to my son? I prayed and prayed and prayed. I keep praying. I have been in this nightmare for a while, and am just getting out of it. I kept wishing that I would wake up from the whole nightmare to discover that it was just that...a nightmare, not reality. I was ashamed, and I was sad. I felt helpless. What happened to my child? I want to have hope that things will be better.

It is really confusing to try to understand the azithromycin packaging for young children. It has three different amounts to give based on the illness, such as for one illness give 10 mg per kg etc. My son finally started on azithromycin, but it is already two months after all of his things started happening after illness after illness. Should I see any difference with him on a 5 day course of azithromycin at 7.5 mg per day or around 1 1/2 tsp? How old was your son when he started taking it, and how long did it take for you to see any difference? YOu said to the other mom to try azithromycin if she doesn't make headway after 6 weeks of augmentin. Does it take that long? What typically happens? I think in an earilier post you said that you saw a difference after 10 days. Did he stay on it after that? I'm sorry...I am working at learning how to navigate around all these posts and remember who posted what information. I'm still a newbie!

You said that it took around 10 days to see improvement. Did your daughter use some sort of penicillin or antibiotics? Are they the same by the way?

ANY LUCK WITH PANDAS FRIENDLY DOCTORS IN CANADA? I AM CLOSE TO TORONTO, AND AM SEARCHING FOR SOMEONE TO PRESCRIBE PENICILLIN FOR MY SON. WHAT IS GOING ON THESE DAYS? DOCTORS SAY THAT PANDAS IS A FAD, OR IT IS CONTROVERSIAL, AND THEY WILL NOT PRESCRIBE ANTIBIOTICS. I KEEP GIVING MY KID GARLIC AND ONIONS HOPING THAT THEY WILL BE NATURAL ANTIBIOTICS UNTIL I CAN HELP HIM OUT WITH THE REAL ONES. EVEN WALK IN CLINICS ARE RELUCTANT TO PRESCRIBE ANTIBIOTICS. IT IS ABSURD!

WHICH DOCTOR HAS YOUR SON BEEN SEEING RE: PANDAS? CAN YOU POST THE INFO HERE OR SEND IT TO ME BY MESSAGE? THANKS, T

IT SOUNDS LIKE YOU'RE IN TORONTO TOO. DO YOU HAVE A GOOD DOCTOR WHO DOES WORK WITH PANDAS? T

THANKS FOR WRITING. SORRY ABOUT THE UPPER CASE.. I CAN'T GET RID OF IT ON MY LAPTOP. CAN'T FIGURE OUT THE BUTTON RIGHT NOW. WOW...YOU WERE VERY FORTUNATE IN 2002. THE SAD REALITY IS THAT DOCTORS ARE AFRAID OF PRESCRIBING ANTIBIOTICS. IT IS AS IF I AM ASKING FOR SOME STREET DRUG OR SOMETHING! IT IS SO SHOCKING! I AM JUST ASKING TO PUT MY SON ON ANTIBIOTICS. DOCTORS SAY THAT PANDAS IS CONTROVERSIAL OR THEY SAY THAT IT IS A FAD. ONE DOCTOR SAID THAT HIS TICS WILL PASS. ANOTHER SAID TO IGNORE THEM. I TOLD HIS PEDIATRICIAN ABOUT HIS SUDDEN CHANGES INCLUDING HIS FEARS, AND SHE SAID THAT THE SECRETARY HAS THE SAME FEARS. I AM HAVING A HARD TIME FINDING SOMEONE WHO WILL CONSIDER AZITHROMYCIN. I WENT TO HIS PEDIATRICIAN AND WALK IN CLINICS. EVERYONE SAYS NO. HE HAD A BLOOD TEST DONE, AND I HAVE TO LEARN WHAT ALL OF THOSE THINGS MEAN. HIS TITERS WERE HIGH, BUT HE HAD NEGATIVE STREP. DO YOU KNOW ANY DOCTORS IN CANADA, OR MORE SPECIFICALLY IN THE TORONTO AREA THAT PEOPLE HAVE TOLD YOU ABOUT THAT HAVE HELPED THEIR CHILDREN WITH PANDAS? WHO IS YOUR SON'S DOCTOR? MY SON IS 7 NOW, AND IT IS SO HEARTBREAKING FOR ME TO SEE MY BEAUTIFUL BOY CHANGED. I HAVE FALLEN APART. I AM JUST PICKING UP THE PIECES NOW. I AM EXHAUSTED FROM FEELING SO DOWN, AND I AM TIRED OF TRYING TO FIND SOMEONE TO HELP ME. SOMEONE FORWARDED SOME NAMES FOR ME TO CHECK OUT, BUT THE PERSON DIDN'T KNOW IF ANYONE WAS CURRENTLY WITH THOSE DOCTORS OR NOT, AND WHETHER OR NOT THESE DOCTORS WERE HELPFUL. IT SOUNDS LIKE YOU ARE SAYING THAT YOUR SON TAKES AZITHROMYCIN ONE DAY PER WEEK, EVERY WEEK, AND HAS BEEN FOR THE PAST NUMBER OF YEARS. IS THAT RIGHT, OR DID HE DO A FULL COURSE OF IT FOR A WHILE. WHEN DID YOU SEE CHANGES? ALL THE BEST!

MOVEMENT DISORDERS CAUSED OR CURED BY COUGH SYRUP... ALSO INCLUDES OTHER MEDS POSSIBLE LINKS TO CHECK OUT... http://journals.lww.com/pec-online/Citatio...isorder.10.aspx http://www.journals.indexcopernicus.com/ab...amp;icid=524220 http://www.liebertonline.com/doi/abs/10.1089/cap.1993.3.231 http://www.questia.com/googleScholar.qst;j...ocId=5002473785 http://www.honeydontcough.com/otcdangersandchildren.html http://www.factsandcomparisons.com/assets/...001_ismpadv.pdf http://michaeljfox.org/newsEvents_parkinso...icle.cfm?ID=263 http://journals.sfu.ca/ijmbs/index.php/ijm...viewFile/26/129 http://pt.wkhealth.com/pt/re/hpph/toc.0000...#33;8091!-1 http://pediatrics.aappublications.org/cgi/...%2F1%2Fe85& Metoclopramide induced dystonia in children: two case reportsU Yis, D Ozdemir, M Duman, N … - European Journal of …, 2005 - journals.lww.com ... 11 Joseph MM, King WD. Dystonic reaction following recommended use of a cold syrup. Ann Emerg Med 1995; 26:749–751. ... 17 Moss W, Ojukwu C, Chiriboga CA. Phenytoin-induced movement disorder. Unilateral presentation in a child and response to diphenhydramine. ...

Canada? Toronto? Mississauga? Oakville? Hamilton?

Has anyone had any luck with a great family doctor, pediatrician, neurologist or psychiatrist in Canada for children who persent with PANDAS? Does anyone have any personal experience that was positive with any doctor who is in the Toronto area (including Etobicoke, North York, East York, Scarborough), or surrounding areas like Oakville, Mississauga, Burlington, Woodbridge, Barrie, Hamilton etc?

Thanks!

I suspect that decongestants are problematic. I did a search one day on line using the search :cough syrup induced movement disorders, and I learned that cough and cold remedies that include decongestants can bring out something in kids that are predisposed to tics. I don't have the links, sorry.

Hi! Does anyone have any names of neurologists, family doctors or pediatricians in Toronto (including North York, Etobicoke, East York, Scarborough) or surrounding area (Mississauga, Oakville, Woodbridge, Brampton, Hamilton, Barrie, Markham, Burlington, Bolton, Orangeville) that have helped your children or your friend's children with PANDAS? Names, their city and phone numbers would be appreciated. My son suddenly started with this tic after an illness, and then with these explosive tics after another illness. He had strep diagnosed and treated months before, but had recurrent sore throats, fevers and coughs that did not get diagnosed. Then... boom.... Three months after his illnesses, his pediatrician did blood tests, and told me that his titers are high, but his strep one was within normal range. I have to get a copy of the test, because I don't know exactly what they are called. She said that otherwise his blood shows that he is very healthy. Would like another opinion

In one of your posts, you said that you believe the tics are connected to probs with immune system and inflamation. You said that you believed that we should avoid boosting their immune system. What kinds of things boost their immune system? Do you mean -echanachea -probiotics -ginseng Anything else?

How has your son been doing? Did the penicillin augmentin help?

What about the back of the neck that has that big bump? Could that be part of the misalignment? What is that bone called? I am afraid of chiropractors after hearing about some deaths. Sounds like they can really make a difference to some people. What about young children? ------- quote name='Chemar' date='Jun 1 2010, 08:39 AM' post='69646'] hi Deby yes, a head injury or anything that causes cervical vertebrae misalignment can cause tics. I mentioned too on the other thread that some have found that if the trans mandibular joint is misaligned, this can also cause tics if you go to the NUCCA webiste you may get info on finding a practitioner in your area http://www.nucca.org

I am wondering about the same thing. My son went on a bumper car ride at age 5 and when he got off, he complained that the back of his neck hurt. In a day or two (dont' remember) he had a shoulder shrug that gradually subsided after two weeks. Since that day, he has always complained that the large bone on the back of his neck hurt, especially when he did his school work bending forward. His pediatrician said that he should ensure that he had a desk that was higher up, so that he didn't have to bend down. The big bone in his neck is really pronounced. Now he is 7 y.o. That big bone in his neck continued to hurt. 4 months before he turned 7, he had strep. Then 2 months before he turned 7, he had an ongoing sore throat. Pediatrican said that he would inevitably have the strep virus in his system, but to wait and see if his tonsils had more red spots on them before giving penicillin. I didn't know what that could look like, nor did I realize the horrible problems that untreated strep could cause. Then one month before he turned 7 he got very sick (fever, throat, bones hurt, cough) and I treated it naturally by having him work out the fever on his own, and giving him garlic. I now believe that was a mistake. Should have just gone to the doctor. He went back to school, played soccer and got hit in the head by another kid and fell back onto his neck. He got sick again two days later, and then started turning his head back and forth and making mouth movements that he had never done before. Got sick again, and then was well. However, the mouth movements increased and he ended up with shoulder shrugs. Now I am wondering about Pandas and something with his neck or head. head/neck injury and pandas too ???