My sincere belief is that you should get some help /couselling this child sounds upset , and needs some outside help.
I also have a child with delays so I am not saying this as someone who doesn't know how hard it can be. But once I realized how my dear baby was feeling on the inside to create such havoc on the outside----- it put my own feelings into perspective. It wasn't about me---- it was about him. I have another child as well and a husband. We all love our sensory kid just as he is and try to help his world be a better place. He doesn't have it as easy as we do and just to make it through the day is 20 times harder for him than it is for most everyone else. Can you imagine if the simple act of wearing a particular shirt made you feel like your skin had a million ants crawling all over it? And you get in trouble for complaining about it? By your own words, can you imagine what it feels like to have your nervous system go haywire? Can you imagine what it feels like to know on the inside that you aren't fitting in but you can't help it? To see that your siblings are pleasing your parents and you can't?
My son tells me all the time, I feel so upset inside or I feel on fire inside or I feel mad inside . . .and I DON'T WANT TO FEEL THIS WAY!. My son has learned to verbalize what it feels like when your nervous system isn't functioning right. It gives me a picture of what he deals with.
Counseling for you and a psychiatrist specializing in children may help your son.
Lastly, I recently read a book that left a big impression on me. It talked about an extremely difficult child (kids with ADD/ADHD, ODD, Sensory, BiPolar, etc.) and how it makes them feel. And it talked about how the rest of the world sees them and deals with them (mostly, they don't). It talked about the special job of parenting such a child. You are the only chance for your son to FEEL love. The rest of the world will judge him as harshly as you do now. Unless you change that, he'll have no one.
This does not come from someone who hasn't been in your shoes. Your attitude will make a difference in the situation.
Sorry this is such a long post... I cut it and pasted it here (I originally posted it for another user regarding a question she had about her daughter) Maybe it applies to your son as well, maybe not, but something to think about. Our child too had no problems at school but would then tell us things at home about how he was feeling that would just break your heart. As far as worrying about the future, don't feel guilty. This is as much about you and your family as it is about him. He feels the pain and needs help,and you feel his pain and want to help. He is screaming for it on the ouside while you are dying on the inside. It breaks your heart and you just want to help him/fix him. Here is the post I have left for other users who have asked about some child behavior issues:
Maybe something to consider (actually two things) regarding your daughter: PANDAs and allergies. If your child has been exposed to STREP recently, there may be a chance that your child's own strep-antibodies are attacking the ganglia in the brain, which results in these actions (it also can result in OCD and really, really bad thoughts.) The antibodies somehow mistake the ganglia for the strep infection. If you think your child has strep or has been exposed.... get a Titer count test. This is how the Drs. tell if your child has strep and it shows the level of strep-antibodies in your child's system. Your child may show absolutely zero signs of STREP or illness but still have it. Also, peanut butter, dairy, wheat, asthma medications may set off behavior issues or OCD or exacerbate the effect of the strep reaction. Good luck finding a Dr. who believes in PANDAs, most don't. But any Dr. worth their salt will have at least heard/read about it. Ours said he didn't think it was a valid diagnosis but could not explain away the documented correlation and had no comment on the accepted diagnosis' of CHOREA (St. Vitus’ Dance) or strep related heart problems that can arise after contracting a strep infection. As far as the peanut butter thing goes... I have no actual proof, only what I consider amazing results after we stopped eating it in our house. Allergies to peanuts do not have to be lethal. They can be mild and any physical side effects can go unnoticed, but who knows what turmoil it is wreaking within the body. One indication of an allergic reaction is called the "allergic shiner". They are light to heavy dark rings around the eyes. Many times it's attributed to lack of sleep, but it is actually the result of an allergic reaction. Also your child might get any itchy throat or itchy roof of the mouth after eating peanut butter.... but it may be very mild so they might not tell you. I have read on-line about reactions to some asthma medications that are unofficially linked to morbid (bad thought) OCD. Night terrors, bad dreams, sleep walking, bed wetting, and/or obsession with frequently going to the bathroom is also associated with PANDAs. I am not a doctor and can only relay to you what I have read. I read that PANDAs is usually noticed in children about the age of 7 but that it can occur earlier. Children don't (or can't) always articulate what is going on with themselves so earlier occurrences of this tragic condition may not be brought to the parents' attention until around that age. What I've read did say though that it is associated with children who have not yet hit puberty but does not mean it can't occur later in life (teens.) There is a book out, written by a mother who's son was almost institutionalized due to OCD. He developed it out of the blue around the age of 11 and after a year (or two, I don't remember) he became so obsessed with performing certain rituals that he was essentially non-functinal. His mother had been video taping his actions to show doctors in an attempt to get help. She was at her wits end and ready to have him put in an institution when someone asked if he'd been tested for STREP. He hadn't but sure enough came back positive and was put on antibiotics. The antibiotics worked almost miracuously and he returned to normal (though at 18 says that if he feels any urges coming on he goes back on the anti-biotics and is completely "cured"/feels normal. I think the name of the book is "Saving Sammy, Curing the Boy Who Caught OCD." I also read an article in the Chicago Tribune last week about a Loyola University student who out of the blue had an auto-immune disease that left her unable to walk and see properly. One theory is that it may have been triggered by a virus which caused her antibodies (to the virus) to attack the brain. She is still recovering after extensive treatments but making improvement. I know this is a ridiculously long post and it may not have anything to do with your daughter's condition but I just wanted to let you (and anyone else who might be going through similar child issues) know that some child mental health issues may actually be caused by the body's reaction to some stimulus or virus. Anyone reading this in hope of finding information (or just plain "I'm in the same boat as you" support) should consider allergic reactions or auto-immune response to blood issues/antibodies before placing a child on medication. I hope this information is of help to you or another reader and that your child's "episodes" are few and far between. I know this can be a nightmare. You feel helpless and afraid... you want to do the right thing but don't want Drs. to label your child as "menatlly ill." I wonder how many children suffer from behavior problems (mild or severe) or Morbid (bad-thought) OCD due to food/drug allergies or STREP. More than we know I'm sure, because I believe most parents keep it to themselves (to keep their child from being labeled) and they hope it will go away on it's own. Little research on this issue and even less discussion within the medical/pyschiatric communities. I have a family member who recently (2 years ago) obtained a masters in child psychology and hadn't even heard of PANDAs and had no idea what might have been going on with my child - ruled out food allergies too... immediately suggested psych meds (we refused!) Except for one reoccurrence last March, my child has been symptom free for two years now. The change? It all went away (over-night) when we completely removed peanut butter from our child's diet. The one occurence in March you might ask? We had our child tested for STREP which was a positive, went on antibiotics and was back to normal. Coinicdence? Maybe, but the timing and positive results we've had seem to indicate there might be something to this.
One more thing, which is very important to remember. The quick/same day result STREP test that they do at the doctor's office came back negative (on two different occasions) for our child. We insisted -and got some static from the doctor I might add- that they send it to a lab for the more extensive TITER test and guess what, it came back positive! As I said before, I am not a doctor and I can only relate in this post what I recall and what I recall reading. Hope it helps and God Bless.
Wish that were the case with my kid but since he has had a few ear infections in the past year and been on antibiotics also used to treat strep (high dose amoxicilen and high dose amoxicilen/ clavulenate acid)----- I guess we can rule that out.
Does PANDAS correlate to ADD/ADHD symptoms or just OCD which you reference?
Allergies are an interesting thing in terms of what they can do. Would a simple stick test for peanut allergy let one know if this is the case?
My own son had ongoing issues that when evaluated were sensory related. I do think being allergic to something could cause sensory like symptoms in that someone would be uncomfortable. However, my son's problems were consistent with some days being worse than others. I am so glad we went to a professional who could give us the route to help him. I'm glad you found the answer for your daughter. Isn't that what it is all about, exploring options to find the answer?
I have had similar problems with my daughter, she recently turned 4. Has your son attended a preschool? If so, did he have these problems at school, learning problems, etc. At first, she was only having the problems at home, then she basically destroyed her entire classroom, hit her teacher and spit at her. At home, she will hit, kick, throw things at us, bite, and when we try to put her in time out, we have to restrain her because she will fight back and get up. She has gotten so out of control that I can't even take her to the store or library anymore because she if she gets mad and doesn't get something she wants, she will start throwing things all over and go on a rampage.
My daughter went to stay with my mother in the summer, and started acting strangely when she came back. We started therapy in September since she was not sleeping, and she told us that my brother (who is 16) and 2 of his friends touched her vagina. According to the child psychiatrist we have been seeing, all of her behavior may be PTSD, and they diagnosed her with anxiety and she has anger from everything that happened. They did put her on prozac for almost 2 mths and since it didn't work for her, they put her on risperdal which she won't be starting until tomorrow. I was not a fan of getting her put on medication for a long time but I realized it was necessary. The only thing you can do is have him see a child psychiatrist; they specialize in diagnosing them and know which medications are ok to give them as well. Good luck.
Oh Sarah, that is terrible. I am so sorry about your little girl. I hope that everything you are doing will help her. This must be a very difficult and painful thing for your family to deal with. Good luck in her treatment.
I'd offer you all kinds of suggestions that would help if your daughter had a developmental delay . . . but that isn't the case here. . First, get her involved in some things that she will like that will give her purpose. If she loves dance, sign her up. If she loves soccer---- get her kicking. Etc. Second, physical activity affectst he brain chemistry very posatively. Every day make sure she is running around. Otherwise, your psychiatrist is taking good care of her, I trust. Good luck to you and her.