My daughter has CNS disorder.?
Topic: My daughter has CNS disorder.?
June 20, 2019 / By Allana Question:
My daughter was diagnosed with Central Nervous System disorder when she was 3, after many many months of struggle and false diagnoses and bad doctors. Her language completely shut down when she turned the age of one, and she did not speak again until a few weeks shy of her third birthday. She did not even babble or make noises anymore, other then to cry. Although the specialists we took her too assured us it was NOT autism, it still took some time to come to terms with this strange diagnosis. Nothing had ever happened to my child to cause injury to her brain, so we assume it is either genetic or something that degenerated over time since birth. She has, however, since the age of 3, made a complete turn around and is not at the other extreme with her verbal and communicative skills, being above average for her age group at 7 years, whereas before she was between 12 and 18 months behind everyone. The doctors at the time didnt give us a lot of information about this problem, and when I research it online, its like looking through quicksand because apparently there are SO MANY types of problems and diseases and diagnosis that can come from just the term Central Nervous System disorder. Although she has made a remarkable recovery, her specialists were quick to let us know that a problem such as hers could make a turn around, and affect her later in life in any sort of unexpected ways, but they also mentioned that she may never have problems again for the rest of her life. My questions are, what sort of problem did she have in the first place, and how likely is it that it will come back and hit her again? We have had alot of behavorial problems out of her lately, within the last year, that I have not experienced in any of my other children, at least in this capacity, or in the children that I see on a regular basis. Some of these problems, the pathological lying, the stealing and hiding, and the sudden outbursts of anger and hysteria have me worried, and I know that to some small amount these things are normal in alot of kids, but not to the level and degree that she has achieved. Is this somehow directly a result of her CNS, and should I have her re-examined by specialists? Her original doctors had her referred to a pediatric neurologist to get some further scans and tests done, but they've had full slots since and have never been able to fit her in, and where she had made so much progress I decided to not further push it. However, in light of the recent behavorial problems, its dawned on me how little I know about her problems, and if they are in any way connected, I want her to recieve any help that she might need. If anyone has any advice, please let me know. With her medical insurance, she has to be referred to these specialists from her regular pediatric doctor, and this doctor has fought me tooth and nail the whole time. So if this is the path I need to take, Id like some back up before I go into the fight so Im not left out in the cold! Thanks for you time reading this, and I appreciate any imput you guys out there might have. Like Ive said, Ive spent hours and days and weeks trying to find out anything on my own, online or otherwise, and it just seems where theres such a large spectrum of problems, it could take years to find an answer.
Best Answers: My daughter has CNS disorder.?
Urian | 5 days ago
While I am by no means an expert in any of this, I do know that the brain is extraordinarily complicated and even to date there is much to learn about how it works and develops, especially in the area of disorders, let alone in a healthy functioning brain.
It's possible it will actually take years to figure this out. With what is medically known about disorders and the brain, medical professionals still being human, business and society being and working as it is, you should realistically expect that this will be a struggle to understand what is happening and how to deal with it for years to come, if not her entire life. Perhaps this isn't what you want to hear, but I feel it is better to understand what to expect than it is to rely on some hope and miracle that may never come.
Whatever the cause is for her problems, the effect might be that her brain is not going to work the same as a healthy brain, even if she is now speaking. Whatever this disorder has done may have affected the development of her mind in ways that at first rendered her silent and now has led itself to behavior abnormalities.
Indeed, even if you found out a specific disorder, the way the disorder has affected your daughter, specifically and individually, might be different than the way it has affected others with the same disorder. You might be looking for something with definite symptoms that fit exactly, but in reality her case is different; this makes it harder for you to find answers as well as for the doctors to find answers.
I believe you are on the right track in getting scans done to see if something in her brain isn't working on the same level of activity as other brains. It might be prudent to continue to scan her brain every year, or perhaps every few years and save the scans with yourself so that you can see if there are specific parts of her brain that are developing slower or not developing at all as she ages. This, I imagine, would help to understand perhaps what is wrong, but more importantly how to deal with it.
You might also consider keeping a written log of abnormalities to compare to later dates, this would also aid in telling if anything is getting worse, or if new symptoms are arising. Being that specific parts of the brain have specific functions, it might aid in further finding and pinpointing what is specifically wrong.
Doctors are paid professionals. Never forget that they run a business. The ones that are resistant still get paid for helping you. Sometimes you have to play hardball and remind them that they're getting paid. If their medical reputation isn't on the line for something specific, they likely have no good reason to deny sending you somewhere to get work done. The ego can be detrimental when someone feels so much pride in themselves, they cannot accept that perhaps they cannot be right. This is particularly harmful in the medical industry as they should always be looking for answers, even if they feel like a blind idiot after finding it.
Gaining a medical degree can be up to a lot of rote memorization. This does not guarantee that someone is competent and has a mind geared towards finding answers. They can sometimes be akin to a computer. Capable of computing information to a high degree, but otherwise incapable of guiding the input. Intelligence is not simply the ability to remember facts, but how they are used.
This all being said, and I hate to put this on you, but it is up to you to find out what is wrong with your daughter. All the problems and potential problems with the health industry, all the people involved, professional or otherwise, you know her best. You need to guide the process of pinpointing problems and dealing with them. The health care professionals and tools are there to aid you. There are too many unknowns to leave it up to people you don't know.
Just take the time to devise a plan and document everything you can. Make your plan long-term. Like I said, if you can compare data from now to data from the future that you plan on collecting, it will help you understand much better what is happening. It will take time to unfold. That is the nature of science and collecting data. It takes time and effort.
It also helps if you have competent and intelligent people helping you. It sounds like you've had people fighting against you and not trying to work with you and share information with you. Keep looking for good people.
I hope you're not doing this alone. Stay strong. Push when you have to. Most of all, I'm happy to see you love your daughter and I hope you live to enjoy her company and find peace in whatever happens. It can be easy to get caught up in thinking we can change the world and control everything in it, I know I have. What comes, comes. Enjoy what you can.
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Originally Answered: Daughter could have some kind of stress/anxiety disorder?
I recommend taking her to a specialist and getting an expert opinion. There are many forms of anxiety disorders and it takes more factors than symptoms alone to uncover what may be happening. You can have "compulsions" without having OCD. It's all related to anxiety, compulsions are how people with anxiety attempt to regain control out of their environment when they feel out of control. They'll want to look at genetic predisposition (anxiety disorders can be passed, for instance, from a parent to a child in 30% of cases regardless of how well the parent may attempt to prevent their anxiety effecting their child). They will also look at what may be going on with your daughter in situations like school and home. They'll ask you to get an opinion from teachers or other sources that work with your child for another view, and some other things. If you find that you're not feeling like the specialist is working well for you both, try another. It's difficult to find the right one on the first try. Your child will hopefully benefit in the long run as a result of your diligence. It's not the answer for everyone but it may be a place to start. Good luck!
Disclaimer: I'm not a doctor.
If the behavioral change is sudden and unexpected by all means seek an evaluation. Sudden and unexpected changes in behavior can be an indication of neurological dysfunction. Or severe psychological stress.
It's also possible that stunted growth has given her the intellectual skills of a 7-10 year old but the body of a younger child (or the opposite body/mind connection could be true). In this case, perhaps the condition is more social and a matter of expectations rather than being physiological. In this case, it may also be that social problems at school or elsewhere have resulted in the behavioral problems.
My recurring thought is: autism. But I'd much rather agree with your/her doctors that it is a neurological disorder. Typically CNS disorders can be difficult or impossible to diagnose until later in life when more advanced intellectual and reflex tests can be preformed.
We can't really tell you anything you don't already know. If money is not the major issue, you should have her taken in for evaluation by a psychologist who would eventually recommend you to a neurologist in turn since it's often impossible to say if a specific disorder is rooted in the body or the mind prior to extensive testing.
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the term CNS disorder seems to be a fairly broad area of coverage. has anyone given you specifics?
In terms of development issues, there are many possible etiologies. Trauma, inutero exposure to some form of toxins, post partum exposure to toxins. to name a few. Has anyone tested her blood for lead? To me what you describe could be related to an environmental toxin such as lead.
A physician looks as symptoms and often will fail to ask the truly important followup questions, such as was your house build before 1970 (which opens up the possibility of lead based paint exposure.)
You need to do some homework, test your home, if she improved, did you move to a newer residences?
Was the house every a meth lab? was there black mold? on and on.
I would investigate environment she was conceived in, and raised in, exhaust possible tests to determine if the environment plays a part.
I had a couple graduate courses on behavioral teratology and developmental psychiatry, 1st course of study is often the last to be looked at. The environment.Birth defects are often predicted on environmental issues.
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The SR in Ritalin is for "sustained unencumber." The health care professional gave you just about the same remedy and the equal dosage. The one change is the SR has buffers in it that gradual the discharge of the treatment. Commonplace 20mg Ritalin is not going to harm your daughter, but it surely may not be as robust -- it could "wear off" earlier within the day. My advice is to take a look at it and notice what occurs. When you become aware of that your daughter begins having symptoms later within the day, ask the doctor to write you a scrip for the SR.
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Originally Answered: Writing a paper for colleg on social anxiety disorder, looking for some insight from people with this disorder?
well..... i'm only 13 so i don't know if i'll be much help, but whatever i'll give it a try.
anxiety disorder could happen when a tragedy or accident occurs in your life and you can't do anything about it. i have this because i had anorexia and was bullied so now i have anxiety about trusting people. if you get so worked up, then it could lead to a panic/anxiety attack. they're not fun let me tell you that.
you could hyper-ventilate or your body could quiver a little bit.
hope this helped even a little bit.
good luck with your paper.