Desperate for referrals. We can’t live like this anymore.

[Anonymous]

Anonymous wrote:What sets off his rage?

OP here. Literally everything. Magnetiles fall over. Sweater won’t go on fast enough. Sister looked at him. Name any mundane action.

[Anonymous]

Anonymous wrote:

Anonymous wrote:This is PP. I’m VERY sorry your pediatrician has been so unhelpful, and I understand how desperate you are (truly), but a pediatrician shouldn’t be messing around with prescribing medications for a child who is having symptoms this severe. You need a psychiatrist. Would an OT help as well? Do you get survives through the school system? If not, connect with ChildFind.

OP here and fair enough. It’s just such an isolating feeling when the medical provider who is supposed to be a partner in your child’s whole development refuses to see you and treats you like just a number at their practice.

I agree with PP but you should definitely find a new pediatrician anyway. Our pediatrician can get you in sooner than that if necessary and would be helping you connect with services. You need someone who is a more of a partner.

I am so sorry for everything you are going through. My child had a horrible period at that age, though not remotely that bad and several times I took my other child and locked us in another room. Absolutely refusing to ever engage in any way physically (even by restraining) was the best for my child. But you are absolutely in a different place so I don’t know if that’s going to work for you. I hope things improve soon.

[Anonymous]

Agree with a pediatrician with CNMC- they have many offices all over the area. They would have the best connection to psychiatric specialists in the area.

[Anonymous]

For the future: Just a recommendation for a pediatrician - My child was having some rages that seemed out of character. I was concerned that my child had PANS/PANDAS or some kind of neurological issue, so I found a pediatrician who was supportive and open - Dr. Gail Warner at Growth and Wellness was recommended and I like her and their office. It didn't get to that point and things have improved with my child but I do see kids with a variety of needs in the waiting room so it tells me that they would probably be good at managing care.
Another recommendation would be Potomac Pediatrics. While I personally didn't love their office (and they have an annual fee), they are super organized and have many wrap around services and also take things like what you are talking about seriously.

[Anonymous]

Get on the waitlist for Kennedy Krieger Institute’s Neurobehavioral Unit (NBU.). They have a range of programs from inpatient to twice a week in clinic outpatient. All they do is behavioral challenges like this, and they are phenomenal. You won’t believe the range of supports they will
Provide and are considered some of the best in the world. No matter what else you pursue, get on their list in the meantime.

[Anonymous]

See if you can talk to someone at Dan Shapiro's Parent-Child Journey organization. I think they've seen everything and might be able to provide insight. You can also sign up for a class at some point when you have a little more energy and meet other parents whose kids are in such need.

I'm so sorry you're going through this. It sounds so discouraging and draining. My child, at a similar age, was raging out at night, knocking things over in his room. I don't know where we fit his furniture in the rest of the house, but we kept moving things out of there bit by bit. I don't know what really got him to calm down--I think it was just time and vacation somewhere new. To this day, I don't really know why he did that, but I think it had to do with a classroom that was more out of control than the school would let on and his being pretty dyslexic when an inexperienced teacher was trying to teach reading and writing (it took him a long time and some tutoring to feel better about writing, and he still doesn't love it.)

I'm glad you reached out. I hope one of these recommendations gets you the help you need. I have found, in the challenging situations with this child, that the moments where I'm the most desperate are also the ones where I'm closest to starting to get things to turn around, because I'm getting advice. Hang in there. In the meantime, I hope you're doing some things that refill you. You need it!

[Anonymous]

How is he at school? If he is 5, he should be attending preK or K. File for an IEP and say that you think he has an emotional or psychiatric disorder or a language or learning disability that is causing him to rage and (if he is raging at school) this is obviously having an adverse impact on education and he needs special instruction on how to manage his emotions and get on with others socially.

I don’t love the quality of school psychological evaluations, BUT, legally they have 30 days to schedule the screening meeting, another 60 days to do evaluation and hold the determination meeting. If you pass screening, they are legally obligated to evaluate him in *all* areas - IQ, achievement, language, anxiety, depression, executive function, memory, processing speed, social pragmatics, autism, etc - for free.

It would at least be a process that would give you some data within 90 days. If he really needs medication or therapy, they can refer to county or state facilities.

If you don’t like or agree with the evaluation, you can file for an Independent Educational Evaluation with a doctor of your choosing paid for by the state or you can submit your own private evaluation.

With some data from the eval, you might be able to convince pediatrician to Rx something. I would be very blunt with the pediatrician - “I am concerned that if we don’t get Dc on some medication to calm his rage, he will hurt seriously himself or another person. Failing t or refusing to treat him presents as big a potential liability as treating him.”

[Anonymous]

Anonymous wrote:Get on the waitlist for Kennedy Krieger Institute’s Neurobehavioral Unit (NBU.). They have a range of programs from inpatient to twice a week in clinic outpatient. All they do is behavioral challenges like this, and they are phenomenal. You won’t believe the range of supports they will
Provide and are considered some of the best in the world. No matter what else you pursue, get on their list in the meantime.

That’s wonderful to hear. We are on the waitlist.

[Anonymous]

If he’s going into kindergarten this fall, send the principal an email. Tell him or her what you’ve told us. Ask how soon you can get a meeting to discuss special education. They’ll need to get started on the IEP as soon as they’re legally allowed to. I’m not sure when that is. I once taught a child where the family tried to hide his needs and give him a “fresh start”. We unwittingly put him in a classroom with another child with known severe behavior problems. It was hell. Be vocal. The school will thank you and do their best to get you help.

[Anonymous]

OP here. Just wanted to say I am overwhelmed by kindness and thoroughness of the responses. Thank you all so much. There have been some avenues recommended that I hadn’t thought of. Really appreciate all of this.

[Anonymous]

Anonymous wrote:For the future: Just a recommendation for a pediatrician - My child was having some rages that seemed out of character. I was concerned that my child had PANS/PANDAS or some kind of neurological issue, so I found a pediatrician who was supportive and open - Dr. Gail Warner at Growth and Wellness was recommended and I like her and their office. It didn't get to that point and things have improved with my child but I do see kids with a variety of needs in the waiting room so it tells me that they would probably be good at managing care.
Another recommendation would be Potomac Pediatrics. While I personally didn't love their office (and they have an annual fee), they are super organized and have many wrap around services and also take things like what you are talking about seriously.

OP here. I have a neighbor who has her kids at Potomac pediatrics and she is happy with the practice. I will reach out there as well.

[Anonymous]

Anonymous wrote:If he’s going into kindergarten this fall, send the principal an email. Tell him or her what you’ve told us. Ask how soon you can get a meeting to discuss special education. They’ll need to get started on the IEP as soon as they’re legally allowed to. I’m not sure when that is. I once taught a child where the family tried to hide his needs and give him a “fresh start”. We unwittingly put him in a classroom with another child with known severe behavior problems. It was hell. Be vocal. The school will thank you and do their best to get you help.

Excellent advice. I will do just that. He is indeed starting public kindergarten in the fall and we have a lot of anxiety around it. Fortunately his is one of the best schools in MoCo and we want the services to work in our favor.

[Anonymous]

Have you tried getting in to a developmental ped? Hopkins, Children’s, DanShapir o?

[Anonymous]

Sounds like you’re in Montgomery county, but the closest treatment facility that offers inpatient and a day program for children is Dominion.
You can make an appointment for an intake to see if he would qualify for the day program, also known as a partial hospitalization program (PHP), And they could perhaps put them on a waitlist for that if he qualifies. They can give you a higher level of monitoring and treatment than regular outpatient services. If things take a turn for the worse, then they can also admit to inpatient.

[Anonymous]

Anonymous wrote:OP here. Just wanted to say I am overwhelmed by kindness and thoroughness of the responses. Thank you all so much. There have been some avenues recommended that I hadn’t thought of. Really appreciate all of this.

I'm so glad! I always say that many parts of DCUM are like a dumpster fire, but 99% of the time, this is a forum I rely on for warm, sound advice and no judgment.