Feeling hopeless and heartbroken

[Anonymous]

Dear OP. We are in the same situation with each parent living apart with a different child but we switch back and forth every couple of weeks so we each get time with each child (and a break). We have late ASD, ADHD, Pans/Pandas and or DMDD diagnoses depending on the provider. IVIG works for us and then getting on the Mathew’s Protocol has also been a Godsend in inhibiting the violence: https://www.rdmdd.org/. Thinking of you.

[Anonymous]

Don't know if this is helpful...

https://neurodivergentinsights.com/blog/low-demand-parenting

I am so sorry you are going through this. I hope you can find a way to reunite your family.

[Anonymous]

Anonymous wrote:Dear OP. We are in the same situation with each parent living apart with a different child but we switch back and forth every couple of weeks so we each get time with each child (and a break). We have late ASD, ADHD, Pans/Pandas and or DMDD diagnoses depending on the provider. IVIG works for us and then getting on the Mathew’s Protocol has also been a Godsend in inhibiting the violence: https://www.rdmdd.org/. Thinking of you.

We also have all those diagnoses depending on provider. Child was allergic to trileptyl so Matthew’s could not work. Haven’t tried IVIG yet bc of aggression issues. Have you seen improvements? Do you see an end in sight?

[Anonymous]

OP, I have nothing new to add here but sending good vibes. My DS at 9 was trying to jump out of the 2nd story window, running wildly down the street, and pulled a kitchen knife on us. Not to be too melodramatic but I felt like I was in an abusive relationship.

He’s 12 now and in a much better place. We can’t take much credit for that. He was diagnosed with ADHD and DMDD and is on a stimulant and guanfacine. We have been working on more consistent parenting. But we know, when it’s all said and done, his brain underwent some changes on its own. In reality, our input was minimal.

You’re doing all you can.

[Anonymous]

PP here with the various similar diagnoses- we have had three IVIGs - the first took care of most symptoms for a few months, second curbed just the violence for six months. We did the third last April/May and started the protocol at the same time. We have been violence free for since last June. We do weekly DBT-C, have him in a very low stress/highly routine environment. Lots of struggles but I never thought we would be here and not in a residential facility a year ago. But, our family is apart and we have made major sacrifices to get to this point. In total we’re theee years in since his challenges started. He is 13. What we’re doing is working well enough for now and for that we’re very grateful.

[Anonymous]

What is IVIG?

[Anonymous]

Anonymous wrote:OP, I have nothing new to add here but sending good vibes. My DS at 9 was trying to jump out of the 2nd story window, running wildly down the street, and pulled a kitchen knife on us. Not to be too melodramatic but I felt like I was in an abusive relationship.

He’s 12 now and in a much better place. We can’t take much credit for that. He was diagnosed with ADHD and DMDD and is on a stimulant and guanfacine. We have been working on more consistent parenting. But we know, when it’s all said and done, his brain underwent some changes on its own. In reality, our input was minimal.

You’re doing all you can.

This is my 10 year old and you are giving us hope. Thank you. I can't imagine him not acting like this, and it is terrifying. We also have received ADHD, DMDD and PANS (different providers) as diagnosis. Thank you for giving me hope.

[Anonymous]

Anonymous wrote:PP here with the various similar diagnoses- we have had three IVIGs - the first took care of most symptoms for a few months, second curbed just the violence for six months. We did the third last April/May and started the protocol at the same time. We have been violence free for since last June. We do weekly DBT-C, have him in a very low stress/highly routine environment. Lots of struggles but I never thought we would be here and not in a residential facility a year ago. But, our family is apart and we have made major sacrifices to get to this point. In total we’re theee years in since his challenges started. He is 13. What we’re doing is working well enough for now and for that we’re very grateful.

We also have a PANS diagnosis but Im scared to have my son do IVIG because they said it could increase rage and aggression. We also do DBT-C and it has helped a lot. I am glad that you have made this much progress in a year. Is he in public school?

[Anonymous]

Anonymous wrote: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?

Fairfax County. The school system was willing to pay the entire bill for residential treatment as an IEP placement. My child had been placed in a day school prior. However, they could not find a school placement that would accept my dc. This was during and after COVID when programs slashed enrollments.

[Anonymous]

OMG, I can't imagine getting FCPS to agree to residential and then having nowhere that will enroll my kid. Jesus H.

[Anonymous]

Anonymous wrote:

Anonymous wrote:PP here with the various similar diagnoses- we have had three IVIGs - the first took care of most symptoms for a few months, second curbed just the violence for six months. We did the third last April/May and started the protocol at the same time. We have been violence free for since last June. We do weekly DBT-C, have him in a very low stress/highly routine environment. Lots of struggles but I never thought we would be here and not in a residential facility a year ago. But, our family is apart and we have made major sacrifices to get to this point. In total we’re theee years in since his challenges started. He is 13. What we’re doing is working well enough for now and for that we’re very grateful.

We also have a PANS diagnosis but Im scared to have my son do IVIG because they said it could increase rage and aggression. We also do DBT-C and it has helped a lot. I am glad that you have made this much progress in a year. Is he in public school?

I have not heard of IVIG causing violence but our provider gives steroids with it that I imagine can. I would think you could look at alternatives. It’s very expensive however and has not lasted each time (I think the protocol has helped us tremendously and has gotten us to the almost year mark). Our son cannot handle much stress and now most social interactions (this was never an issue before age 10 when this all started). He was out of school for several
Months last year. His private school for neuroatypical kids could not handle his needs and public school would eat him alive. We have him out of state in a small
Microschool with just a few students and several teachers till he builds back. Not sure when or where we go next. It’s really tough but so much better than a residential for us. He is great or not great and like two different kids depending on how he is doing that day or week- but there are more good days than bad now and I could not imagine him when in a good state in a facility.

[Anonymous]

Food allergies can cause a lot of problems and are very difficult to diagnose.

[Anonymous]

OP, you mentioned you had a family member who was going to stay with you for a week.

How is/was your DD's behavior while that family member was present? Did you notice any differences?

[Anonymous]

I have been thinking about this post a lot lately. My very challenging 10 year old is making it so scary and difficult I don't know how we would separate but you are so brave to do this. We are in therapies, medicating, spending all our money to help him and it is not working. I am scared and feel like I am going to brake. I guess....you are not alone and I Have to believe it will get better.

[Anonymous]

My DD could not tolerate stimulant meds. She was horribly violent. The worst of it stopped when she went on Strattera instead (nonstimulant).

I would definitely look at the meds.