Helpmyson78

Wow !!! You all explain my son to a tee... I always wonder is this 4 year old stuff..but clearly not. He stopped hitting a few months ago, he has his moments still getting very upset, mad. It requires the patience of a saint to deal with him sometimes My son has a lot of things going on that aren't his normal self...a lot !!! OCD stuff started two months ago, lining up all toys 6 feet long in perfect form. Everything is dirty to him, he used to play in the mud, sandbox all day in the summer and now if there is a drop of water on his shirt it's dirty! Anyones child have major problems at night? Sleep problems? Fear of sleep? Tics all night? Hallucinating ? Night terrors?

No worries, it's so hard to relay all we want to say via this form of communication !! I'm a total mess and am soooo drained mentally from researching , reading the Sheila Rogers book and trying to keep an eye on my sons semi improvements... I feel like a mental case I'm pretty sure my sons case is straightforward ... Pandas.... Wondering if I should lay off the new vitamin and motrin until I know if the meds are working ? As a parent I want to eliminate everything at once ! But I know we have to try one thing at a time. Thanks for the support, my husband and I are alone in this, not much family support, this website is a blessing !!!

LLM ! Thanks!!!! I'm all about devising a plan right now!

and these other options aren't going to happen for us, because my husband was laid off in october last year and our home is in foreclosure, so we have to try these other options as flying places for treatment isn't an options for us.

Thanks !!! How do they test for Lyme? Blood ? From my email ps the past two weeks dr.Kaplan expresses options available. I was ready to cancel the appointment ...but he seems open minded. "let's the chips fall where they may" My son takes a very good food based vitamin with magnesium in it, he is being tested for allergies next week... Might find some new triggers. I'm buying motrin today!!!!! Is it safe to give a lot? He was up ticking for 3 hours last night. I need him to sleep. We all know he behaviors kids receive when they don't sleep I have this gut feeling my son has both Lyme, and pandas. He has had tics on him before, we are outdoorsy folks. We remove all tics, but I'm reading something about infections from a tic bite, never knew about this ! I'm hoping my son will be admitted to the hospital for testing etc. Dr.Kaplan treats his patients as if they were his own, and like I said his emails were very supportive. Up to this point NO doctors have been helpful besides telling us he has a tic disorder.

My son has rages ...among every other symtpom of pandas. His rages are...something is difficult or something doesn't work right and he stands up put his arms straight out in front of him and growls, screams, grunts, it's not pretty. So is this a rage? he is 4 , 4 year olds are known for many things He lives in a very calm, happy, loving home., so I'm assuming rages are just not a learned thing... Most of his symtpoms have appeared randomly thru the past two years., night terrors etc.

Thanks His primary is willing to help treat this, she has treated one patient in the past. I'm fortunate and blessed that she even gave me twenty days worth of cefdinir !!! Thought I was going to have to explain pandas to her., and beg her for antibiotics Dr.Kaplan is who my son is seeing Monday morning, between these two doctors I might get somewhere, like I said I have been emailing Kaplan and for all I know there will be a major work up done on Henry Monday or following appointment. I am too driven at this point to sit and wonder what all this could be, I want answers!!!

I called two of the so called pandas specialist in Minnesota 4 times each and never received a call back. Dr.Kaplan is professor of pediatrics at the university of Minnesota, he has studies strep for over twenty years. I recently asked him boldly if he was a critic of pandas and was surprised in a good way at his answers, To say I'm pissed at a possible misdaigosis for my son is an understatement . I have been calling his primary and neurologist for over a year with exact and presise concerns about my sons downward spiral of issues to be offered nothing besides some random meds...only to now read symtpoms of pandas are exactly what he has been going thru, Heres what I need, a room full of moms/dads who have gone thru this to tell me I'm not crazy ...because these doctors I've seen the last two years have helped in no way.

Great question !!! My son might have pandas, has a tic disorder and I feel the same way after reading all symtpoms of pandas, it hit me like a ton of bricks.

Hi everyone .. My son has a tic disorder and possible PANDAS now. He is seeing Dr.Kaplan Monday ...who ive been emailing the last two weeks here in Minnesota. My son is on day 14 of cefdinir which his primary gave me when (new primary) I told her my son was diagnosed with a tic disorder and was tested positive for strep as soon as I learned about PANDAS three weeks ago... My son had two entire days and nights with no tics !!! This hasn't happened in 2 years, and now the tics are back tonight... Has anyone seen this with treatment right away ? If this is pandas , assuming he has had it for a long time. I'm trying to be rational here but it seems like something is going on and that the antibiotics are doing something. He is also being tested for allergies in a week in case it isn't pandas ..need to get the ball rolling on what is triggering all these tics. My son exhibits each and every symptom of pandas and I almost died ...iterally died when all the peices to this sad puzzle were put together. He is almost scare to fall asleep,inability to fall asleep. OCD, tics, aggression, night terrors, hallucinations, sensory issues, tics all night...but everything the past year has been so much worse. We noticed his first tics when he was 1.5 and now is almost 4, just last year he was seen by a neurologist who boldly said come back if you want meds....otherwise good luck. My husband and I are so distraught , we are holding onto our faith so tight. Please pray we find answers. Can someone explain the Lyme correlation? My son has been in the woods, at my in laws farm since he was little...but im curious about the exact symptoms. Again sorry for all the blabbing, my main question is about the reaction I'm noticing from cefdinir. Two days without tics has to mean something, when it's been years since he had a tic free day

Thank you both for your input ! I suspected the dust,vent idea, and also figured it was just that with bedtime and mealtime....relaxing, sitting and focusiing on relaxing etc. My son has been on cefdinir for 12 days today and this morning woke up tic free, he tics every morning....it's like my alarm clock. He has had morning tics for years and it's amazing for he first time hearing him sing ....in the morning ...yes I was sobbing I was going to give up on the pandas deal, but now I have to wait and see what the meds might do. Since he did test positive for strep with no symtpoms, which urgent care thought I was crazy for requesting the strep test. Thank you for encouraging words, if I didn't have my faith to hold onto and to keep me strong I would be lost. My husband and I have worked so hard to look outside the box with everything and will regardless of a pandas diagnosis or not, will continue to help our son thru this! Thanks again !!

I should add he is going to an allergist soon as well... An has had EEG's ...sleep studies.... Etc Please excuse all the typos!! Tired mommy!

Hi everyone! Well it's been a long road for my son and our family, and this website has been a blessing to say the least. My son has had motor and vocal tics since he was 1.5 yrs old and they have gotten way worse. Upon reading the Sheila Rogers book, and a lot of posts on this wesbsite I have learned so much on how to help my son. He saw a neurologist a year ago who told us he had a tic disorder and that was it. Great right ? I have currently made my sons room dust free, air purifier, dust mite pillow covers, humidifier (winter here) hypoallergenic bedding...etc etc. He eats very healthy already no dyes, food colorings, high fructose corn syrup. I got rid of all candles in the house, use dye free scent free detergent. We don't use perfumes or cologne anymore. (can you tell I'm going full speed trying to help my son) Questions! 1. All his tics come out at night, leaving him incapable of sleeping, why is this? He started melatonin 4 weeks ago, Godsend! But why all at night. 2. why does he tic at the table? Dinner, breakfast...when he is sitting eating he tics 3. He was on soy milk till 1.5 years old because he was puking all day, and the doctors told me it was normal, so I took it upon myself to try soy milk, and it made him healthy and happy!!! But then the doctors said to try whole milk again..when he was 1.5 years old...and that is when his tics started. How long should I eliminate milk? A few weeks? A months? Before I might see possible changes? 4. He tested positive for strep two weeks ago and isoniazid cefdinir,for possible PANDAS.... Seeing Dr.Kaplan here in MN next Tuesday ... I'm reading he is a critic of pandas, but we shall see... My son has shown OCD symtpoms the past two months, like I said he has gotten worse with everything, I know pandas kids have a hard time at night...I'm open minded about him having it or not. The antibiotics really haven't made the tics worse, but if he has been strep ridden for two years I'm assuming it's not going to go sway in ten days! As all of you know helping a child with all this going on is a full-time job that takes toll on every aspent of your life....I'm basically proud of myself at this point for advocating for my son and not letting doctors discourage me. My son is happy and well adjusted most of the time for being 4 , he gets very mad at night because the tics wont stop and it breaks my heart. Thanks for any input and help on this!!

I was just at our clinic , my daughter is sick now ... I mentioned pandas to the doctor we saw, who the kids have seen before. She was open minded about pandas, and gave me tons of information about it, and a stronger antibiotic for my son. She said to follow up with her after all antibiotics are done. I am relieved and glad I mentioned pandas to this doctor, I never in a million years would have guessed she would have been this helpful.

I was just at our clinic , my daughter is sick now ... I mentioned pandas to the doctor we saw, who the kids have seen before. She was open minded about pandas, and gave me tons of information about it, and a stronger antibiotic for my son. She said to follow up with her after all antibiotics are done. I am relieved and glad I mentioned pandas to this doctor, I never in a million years would have guessed she would have been this helpful.

I'm new here My son started having tics (motor and vocal) in 2009, he was in and out of EEG's, sleep studies etc.. The neurologist told us he had a tic disorder in 2010 and we accepted this for the time being and moved on with our life. The past 2.5 years have been a roller coaster to say the least. My son exhibits many signs that parallel PANDAS. I have created a "Health file" on every little thing he has been thru ...documented for any doctor to see. He has had croup 4 times since he has been born, each year....7-10 ear infections. Today he tested positive for strep having no symptoms whatsoever. In my gut I know my son has Pandas, and I feel at a loss trying to convince a doctor of this. The doctor gave my son antibiotics for ten days. My son has had major problems at night, he could tic for hours. For about 6 months he would only get 4-6 hours of sleep a night...we started giving him melatonin and he is able to sleep. Any advice or resources are appreciated.