Feeling hopeless and heartbroken

[Anonymous]

Anonymous wrote:Can you go all Amish like and just take away the internet and TV beyond a phone line? Its still possible. We lived without the internet two generations ago and without TV four generations ago. I think it would help. They might read then instead but that is more manageable as to what they are reading. Gives you a reason not to do work at home too.

Saying this in hindsight with a kid kind of similar. Wish we just had gotten rid of electronics and just not had to deal with them in the home.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Can you go all Amish like and just take away the internet and TV beyond a phone line? Its still possible. We lived without the internet two generations ago and without TV four generations ago. I think it would help. They might read then instead but that is more manageable as to what they are reading. Gives you a reason not to do work at home too.

Saying this in hindsight with a kid kind of similar. Wish we just had gotten rid of electronics and just not had to deal with them in the home.

No offense but OP's problems are much bigger than quibbling about phone time.

[Anonymous]

Anonymous wrote:Internet needs to go, like forever.

This was the one thing I never took away from my ODD/ASD child. It helped him calm down and.regulate. if the experts on his team had a better method that actually worked I would have given it up but they did not.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Internet needs to go, like forever.

This was the one thing I never took away from my ODD/ASD child. It helped him calm down and.regulate. if the experts on his team had a better method that actually worked I would have given it up but they did not.

So how did you balance becoming obsessed or anxious about the tech v calming?

[Anonymous]

I did not read every post in this thread but I just wanted to say that our family friends had similar challenges with their 10-year-old son. Though he was less violent, the parents felt hopeless he would ever behave normally. He was not hospitalized, did not physically harm family members (he is small for his age) but not allowed in public school classrooms for fear he would hurt classmates as he had in the past. He was misdiagnosed for years with severe ADHD and as a result was on medication that ultimately made his behavioral problems worse.

Last year, my friend hired a new psychiatrist who conducted new evaluations which uncovered her son was bi-polar and ASD. He immediately started new meds and intensive counseling and ABA therapies 3 times per week.

Now, one year later, he is a different kid... happy, funny, pleasant to be around, well-behaved, conversational, more social (making friends), and doing well in school in a regular classroomwith pull-outs! There is hope OP!!

[Anonymous]

Anonymous wrote:I did not read every post in this thread but I just wanted to say that our family friends had similar challenges with their 10-year-old son. Though he was less violent, the parents felt hopeless he would ever behave normally. He was not hospitalized, did not physically harm family members (he is small for his age) but not allowed in public school classrooms for fear he would hurt classmates as he had in the past. He was misdiagnosed for years with severe ADHD and as a result was on medication that ultimately made his behavioral problems worse.

Last year, my friend hired a new psychiatrist who conducted new evaluations which uncovered her son was bi-polar and ASD. He immediately started new meds and intensive counseling and ABA therapies 3 times per week.

Now, one year later, he is a different kid... happy, funny, pleasant to be around, well-behaved, conversational, more social (making friends), and doing well in school in a regular classroomwith pull-outs! There is hope OP!!

I am not OP but I have a VERY similar child (though less violent most of the time). This gives me so much hope. How old was your friend's child when diagnosed? Do you know what medications helped them? This gives me hope.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I did not read every post in this thread but I just wanted to say that our family friends had similar challenges with their 10-year-old son. Though he was less violent, the parents felt hopeless he would ever behave normally. He was not hospitalized, did not physically harm family members (he is small for his age) but not allowed in public school classrooms for fear he would hurt classmates as he had in the past. He was misdiagnosed for years with severe ADHD and as a result was on medication that ultimately made his behavioral problems worse.

Last year, my friend hired a new psychiatrist who conducted new evaluations which uncovered her son was bi-polar and ASD. He immediately started new meds and intensive counseling and ABA therapies 3 times per week.

Now, one year later, he is a different kid... happy, funny, pleasant to be around, well-behaved, conversational, more social (making friends), and doing well in school in a regular classroomwith pull-outs! There is hope OP!!

I am not OP but I have a VERY similar child (though less violent most of the time). This gives me so much hope. How old was your friend's child when diagnosed? Do you know what medications helped them? This gives me hope.

Child was almost 11 when diagnosed. I don't know what meds he is on or was on (I don't want to pry, I just lend support and listening ear) but I know the side effects mess with his sleep patterns and make him extra tired. Also, he loses weight despite eating more. But friends think it was the ABA, extra counseling and group peer counseling that made the biggest impacts. Poor kid was misdiagnosed for years and the parents didn't know any better despite trying different meds (that were not effective for bipolar) and behavior modification techniques (that didn't work for ASD).

My son now wants to play with his friend rather than being forced to hang out with him when the families get together. In the past, we didn't trust the two of them alone together because of the kid's unpredictable (e.g. running into busy streets) and sometimes aggressive (e.g. hitting, trying to push and hold my son under water) behavior. The kid is also conversational (with adults too) rather than just making odd statements and unfunny jokes or stewing. Good luck!

[Anonymous]

Anonymous wrote:Haven’t read all of these but please get Lyme, Bart and babesia testing with igenex / tlabs. My daughter was a raging maniac before treatment. She changed through treatment into the sweetest child. I wouldn’t have believed it if I hadn’t seen it with my own eyes. Neuroinflammation and infection were to blame in our case. Negative western blot for her so not reliable if this is a long term issue.

Chiming in to say you should get a full panel of vitamins and metals. Low iron saturation does not show up on other teeth and when it does, they blow it off. Get ferritin iron saturation test plus be sure to bring aby and all vitamin deficiencies up to mid level (not borderline). Speaking from experience with a formerly violent child.

Also agree about choosing the hill to battle on. If you are having to separate the family over screen time you can feel pretty guilt free about giving up the ghost on screen time.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP - thank you for sharing your own stories, it does help to know there are other people going through similar experiences.

In response to why this is happening to our daughter- we don’t know. I can say reflectively that she has always been disregulated, even as a newborn. Even as a toddler her tantrums were more extreme than a typical peer but easier to write off as normal development. Her doctors and treatment teams have not identified a reason but rather diagnosis.

I have thought about taking leave from my job and have had to take short term leave during both of her hospitalizations. My job though is the only place I can feel somewhat normal and is something I really enjoy. It is an escape for me. I also realize that I may have no choice soon, especially now that my other child and husband need to be in a different location.

If anyone has experience with a residential treatment or therapeutic boarding school please share them. This is something we are exploring but it is a very scary thought. I don’t want her to go somewhere that causes more trauma.

Weekends are hard and this thread really helped me get through yesterday. Thank you!

Hi OP, counterstrain booster here. I can say that counterstrain can work on birth injuries, not just new ones. My sweet dc toe walked for years. We took him to a counterstrain pt. The part of the brain they treated was exactly where the cord was wrapped around his neck during birth.

I would strongly, strongly suggest that you call Brian Tuckey’s clinic and ask to see Brian. Your DC’s symptoms correspond with his current research. He will NOT string you asking for extra appointments unless he can help. Many people call and simply can’t get an appointment, because the clinic is so busy.

They assess what’s going on inside the head by lightly pressing on the outside. He let me feel my dc’s head after the drained the swelling first side, but before he drained the swelling on the other. There was a distinct difference. He’s also treated my kid for lack of blood flow and tension on the nerves.

Obviously, if your dc has a tumor, PT is not going to cut it. But it’s a noninvasive way to get information about what’s going on inside. Of course, I’d recommend a scan of some type as well. If your DC has brain surgery, having a PT appointment before the surgery is helpful. Once the surgeon cuts, that part can’t really be treated as successfully with counterstrain.

Even if you choose not to go this route, you have my support and my admiration. I couldn’t send my sweet DC away husband. He’s what got me through the hard times.

I would love to hear more about counterstrain. Do you know if it helps mood disorders?

It can help mood disorders IF there is swelling, reduced blood flow, or nerve tension in the wrong area. Counterstrain does NOT rewire the brain, so anything that runs in the family is probably not treatable. Just like a cast can help ankle pain due to a broken bone, but not ankle pain due to cancer. It’s a tool that fits a specific type of problem.


You won’t know whether counterstrain can help until you go to the first appointment. Brian Tuckey’s clinic is very busy, so don’t expect to get Brian unless your life is being ruined. (OP’s child clearly falls in that category.) Tell the receptionist the specific symptoms. Sometimes she’ll consult the clinicians and call you back. They don’t know as much about the brain as other areas, so a lot of symptoms aren’t treatable yet.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:OP - thank you for sharing your own stories, it does help to know there are other people going through similar experiences.

In response to why this is happening to our daughter- we don’t know. I can say reflectively that she has always been disregulated, even as a newborn. Even as a toddler her tantrums were more extreme than a typical peer but easier to write off as normal development. Her doctors and treatment teams have not identified a reason but rather diagnosis.

I have thought about taking leave from my job and have had to take short term leave during both of her hospitalizations. My job though is the only place I can feel somewhat normal and is something I really enjoy. It is an escape for me. I also realize that I may have no choice soon, especially now that my other child and husband need to be in a different location.

If anyone has experience with a residential treatment or therapeutic boarding school please share them. This is something we are exploring but it is a very scary thought. I don’t want her to go somewhere that causes more trauma.

Weekends are hard and this thread really helped me get through yesterday. Thank you!

Hi OP, counterstrain booster here. I can say that counterstrain can work on birth injuries, not just new ones. My sweet dc toe walked for years. We took him to a counterstrain pt. The part of the brain they treated was exactly where the cord was wrapped around his neck during birth.

I would strongly, strongly suggest that you call Brian Tuckey’s clinic and ask to see Brian. Your DC’s symptoms correspond with his current research. He will NOT string you asking for extra appointments unless he can help. Many people call and simply can’t get an appointment, because the clinic is so busy.

They assess what’s going on inside the head by lightly pressing on the outside. He let me feel my dc’s head after the drained the swelling first side, but before he drained the swelling on the other. There was a distinct difference. He’s also treated my kid for lack of blood flow and tension on the nerves.

Obviously, if your dc has a tumor, PT is not going to cut it. But it’s a noninvasive way to get information about what’s going on inside. Of course, I’d recommend a scan of some type as well. If your DC has brain surgery, having a PT appointment before the surgery is helpful. Once the surgeon cuts, that part can’t really be treated as successfully with counterstrain.

Even if you choose not to go this route, you have my support and my admiration. I couldn’t send my sweet DC away husband. He’s what got me through the hard times.

I would love to hear more about counterstrain. Do you know if it helps mood disorders?

It can help mood disorders IF there is swelling, reduced blood flow, or nerve tension in the wrong area. Counterstrain does NOT rewire the brain, so anything that runs in the family is probably not treatable. Just like a cast can help ankle pain due to a broken bone, but not ankle pain due to cancer. It’s a tool that fits a specific type of problem.


You won’t know whether counterstrain can help until you go to the first appointment. Brian Tuckey’s clinic is very busy, so don’t expect to get Brian unless your life is being ruined. (OP’s child clearly falls in that category.) Tell the receptionist the specific symptoms. Sometimes she’ll consult the clinicians and call you back. They don’t know as much about the brain as other areas, so a lot of symptoms aren’t treatable yet.

I should clarify, to my knowledge, parts of the brain are currently being researched. That’s Brian Tuckey. You can’t go to any random counterstrain pt and get this type of help. Call the clinic and describe the symptoms. If they can pass you off to someone, they will, especially if you live far away.

[Anonymous]

I am the OP- thank you to everyone for sharing additional medical testing recommendations. I had one appointment today with her psychiatrist and have an appointment later in the week with her PC. We have explored a lot of what has been suggested and will follow up with the rest.

I also wanted to clarify that our situation has very little to do with screen time. As I shared in one follow up we do not allow social media but she does request it often, that is what happened at 3:00 am in my original post. I have no judgment on screen time and trust every family makes the right decision and choice for their family. I did think it was important to clarify that our situation is really not about screen time.

I also have asked a family member to come and stay with me this week, just to have another adult and support system as we try to figure out next steps but are really taking things day by day, hour by hour.

Again, I appreciate all of the responses and kind words. It often feels impossible to find support without judgement and I am really thankful that I found that here.

[Anonymous]

I don't know what school system you are in but FCPS agreed pretty easily in a similar situation for us to pay for residential school.

(However, we could not find one that woild admit our dc.)

[Anonymous]

^^^There was a place called Kings peace in Pennsylvania you might want to check out

[Anonymous]

OP, I have no useful experience to share, but I just want to send good thoughts your way. I hope you are able to find some help soon. Like others on this thread, I also found that therapy and medication for me were hugely helpful when I was dealing with my own DC's difficulties. Please take care.

[Anonymous]

Question for the PP- When you say FCPS do you mean Fairfax county or Frederick county and is the school system paying for part of the cost or is it private pay for the residential?