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Thread: New and need advice

  1. #1

    Default New and need advice

    Hi! I am new to this group and I am hoping that someone can help lead me to the right path for helping my daughter. Here is her story:
    After Bella was born I had a really sick feeling not to vaccinate. I did research and talked to my pediatrician but couldn't shake the feeling that I needed to avoid vaccines. Our pediatrician was very pushy and reminded me that I had already vaccinated all of my other children. We opted out of the Hep B vaccine and then to appease my ped, we delayed the rest of her schedule. She has had 3 surgeries in her life. The first was a sinus surgery to open her passages. She would stop breathing at night or when laid down due to constricted air ways. She was close to 2 years old. She also had her tonsils out close to the same age due to high fevers which started when she was 1 month old. They continued every 3-5 weeks until I realized there was a pattern and asked the doc what was going on. He referred us to an ENT who took the tonsils out and no more fevers! The third surgery was another sinus surgery when she was 4. The scar tissue had grown to close the airway again. She has been healthy otherwise. Two years ago her older sister had a vaccine reaction. This sent me into much research and we have stopped vaccinating. Bella was 6 at the time so she received all of the other vaccines up to that time. I didn't notice any neurological problems until that year. I can't remember if it was before or after those last vaccines but I started noticing she jerked when she slept. It started out when she first fell asleep and it was like a jerking we all have when we feel that falling feeling which usually wake us up. Then I noticed it lasted through out the night. At times she would come off the bed she would jerk so much. It was hard sleeping with her because she would end up kicking or hitting you when she jerked. It seemed to be getting worse but it didn't wake her unless it was severe. I took her to the pediatrician who sent us to neuro. They tested her iron and gave her a supplement. They sent us for a sleep study and said the findings were borderline and they would recommend medication if it seemed like her sleep was being interrupted. Otherwise, they couldn't help us. She is a normal healthy kid otherwise but recently started having severe anxiety issues. She takes gymnastics and recently made the team. The anxiety started when we switched to a night time class. The day time classes are less noisy with not a lot of people there. At first we didn't know what was going on and I ended up putting her into therapy due to her behavior and to appease the instructors. She kept insisting therapy wasn't helping and we finally stopped going. We have used coping techniques and she was having good days and bad. She has been working hard to push through it and had been doing really well until last night. The gym started a new term and there were 3 new classes added to the time slot. The gym was packed full of people. Shortly after we arrived she had a full blown anxiety attack. I have been watching her to figure out a trigger. Last night it was obvious that she was overwhelmed by her surroundings. After reading online today I am wondering if she is having a sensory overload. Of course anything online is related to Autism when it comes to sensory disorders and couldn't answer my questions. I am at a loss as to how to help her or get help for her. I am now wondering if something in her brain is causing the jerks and the sensory issues. Because of what I have read about vaccine injury it is always my first thought. So I guess I am looking for input. Has anyone had anything happen like this? Can anyone give me suggestions on what to do or if this even could be a result of vaccines? I would appreciate any thoughts. Thanks!

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  3. #2
    Distinguished Community Member tic chick's Avatar
    Join Date
    Oct 2006


    welcome momof10 !

    welcome to braintalk and i know you will find the support you need here!

    first of all, there is an excellent child neurology forum here that deals specifically with neurological issue in children. you can go directly to that forum by clicking on this link:

    her night time jerking has a name, it's called myoclonus. here is a website that explains it: if you google "myoclonus" you can search many websites. when bella had her sleep study, did they check for sleep apnea? has she had a eeg done for epilepsy? i ask about the sleep apnea because of her sinus issues. my friend has had sleep apnea from an early age. around age 20, he had a surgery that removed all the excess tissues in his nose, throat and mouth, so that no tissue would obstruct his airways. he also has leg jerking, which might be "restless leg syndrome". he still wears a cpap machine to help him breathe correctly at night. i wonder if the overgrowth of her sinus tissues and leg jerking could be interconnected?

    now, the anxiety. being on a gymnastics team or any competitive team is bound to cause anxiety at times. i started having panic attacks at age 19, but mine were caused by post traumatic stress disorder. i also get sensory overload when exposed to a lot of different noises at one time and also when i go shopping at one of those big superstores where they have everything from plants to food. if you google "sensory issues without autism as a diagnosis" or something similar, you might get more hits that don't deal with autism. for instance, i got this one, which suggests a book to read:

    i would also suggest this website for some ways to deal with anxiety, excluding those not age appropriate: i wouldn't recommend taking the test suggested. you already know your daughter is anxious, but the suggestions are very helpful. i have done many of them. there is also a game you can play or buy called "superbetter". it was developed by a woman to help her with depression, but many people started playing it to deal with other issues, including anxiety. this is a link to the woman and her blog about the game:

    of course your daughter is normal! everybody alive will have medical issues sooner or later. i know there is a tendency to want to find a cause for everything, but sometimes the answers aren't there, all we can do is work on the symptoms. there are many brain chemicals and neurotransmitters in the brain. an excess or deficit of a chemical and a short circuit in the brain can cause a specific disease or syndrome. i have tourette syndrome, something that starts in childhood. it is lifelong, but not fatal. i have learned to cope in many ways and have lead a pretty normal life. whatever you do, please don't focus on your daughter's problems to the point of ignoring her successes! yes, talk to her and ask her what SHE thinks her biggest problem is. she is the one who will be making decisions about her health care once she becomes an adult or old enough to understand. she has to be a partner with you in her healthcare now. don't be afraid to press doctors for answers. go armed with information that specifically fits your daughter's problems and you have a much better chance of getting the doctor's attention. don't try and fix every problem she has. focus on the one that seems to disrupt her life the most. you might find when you get a major problem under control that other problems seem to lessen.

    i hope this helps. i know others will read your post and be ready to help .

    thank you for sharing,
    WE ARE BT!
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

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