We have a very challenging teenager, currently in 8th grade.
He has always been difficult, has some underlying chronic infections that we have been working on for 8 years with no relief in sight. He has executive function and focus challenges, as well as behavioural challenges (teenage on steroids type).
It is an extreme emotional burden to our family - I am pretty sure I have PTSD and our younger son covers his ears every night when the 8th grader goes on a screaming rampage.
Is there a place, preferably in North California or West Coast that could work with a child like this? I know that a typical plan is to:
Do therapy (I think it will be useless as his health issues are the driving force behind all), but open to trying.
Psychiatric drugs - avoided until now, but open, although scared of risks/side effects and really a bandage while healing the current infection.
A boarding school that will miraculously take a chance on him despite his behavioural issues. Need lots of academic support, structure and positive environment.
Based on what I read, wilderness programs and therapeutic boarding schools range from tough love to shady, so naturally, these are likely not the right route.
He has a 504 in school, struggles with focus and can’t do a demanding schedule. High IQ on the gifted scale. Very visual and spatially intelligent.
Who is making your primary diagnoses? The pediatrician? I would expect that the peds or the school counselor would have a list of resources and possible places to try.
A good pediatric psychiatrist might also help guide you. Are you near a major teaching hospital.
I’d probably want to work with someone to find a collection of tools for my child (meds plus therapy plus exec function coaching etc) rather than try on my own to find one program to help.
So sorry that your teen and your family has to go through this. Does your child have a diagnosis other than infection? I think an accurate diagnosis is a good place to start.
I’m so sorry your family is going through this, and I hope you will find a solution soon.
If I had a gifted. twice exceptional kid that needed therapy the best person that comes to mind is Dr. Aimee Yermish, from Stow, MA. I only met her on a gifted and talented families mailing list (GT-FAMILIES), but she helped so many people there and I was always in awe at the vastness and depth of her knowledge, and at her empathy with the kids and their families.
Even if you cannot contact her in person, and therapy is not an option, a letter just like your message here sent to her would probably help, since she is so knowledgeable.
Have you tried the Davidson forums? There are some parents of 2E kids who might give you some ideas. Here is a link (but use your computer, not your phone — this link is not mobile friendly):
I have a lot of questions. Is he on meds? Does he have a psychiatrist? What does the psychiatrist recommend for his schooling? Are you satisfied with his current sources of care? Are you comfortable that ADHD is really his diagnosis, or the full extent of it? Since you mentioned “infections,” have you ruled out PANDAS? If you have ruled it out, what are you saying is the connection between his “infections” and his behavior? What type of infections?
What you are describing sounds like something different from ADHD.
Infections + behavioral challenges = look at PANS. Include a very thorough workup of the immune system, as immune deficiencies are very common with pans. Go on FB and search for pans/pandas groups, especially ones in your geographic region, to help identify providers. Stanford has a specific clinic but only takes local patients and has a waiting list many miles long.
Why does he only have a 504 rather than an IEP? If he has high I.Q.but can not perform well in school on his own, that is ground for a learning disability label which, along with his other issues, should qualify him for nan IEP. A true learning disability is a child with a high I.Q. but low performance. Unfortunately the L.D. label is used for a “catch all” for “slow learners.” A 504 is very minimal intervention/support. I can’t help but think to start by getting an IEP because it is a starting place for more support.
I do not have any answers but I am sorry for your family. I hope that you all can find the support you need.
Having grown up with a sibling who has daily tantrums, I feel for your family. It is a heavy burden for all of you, terribly traumatic especially for your S having the tantrums. As the sibling who grew up with this, it influences my behavioral patterns to this day, both positive and negative.
Having watched this play out over the decades, I’d like to offer a counter to some of what you mentioned. As with my family of origin, I’m sure you are trying very hard to do the right thing.
Therapy, no matter the underlying cause, works with the emotional responses to conditions and pathological behavioral patterns. A young person can benefit from learning to work with a professional in a therapeutic context, even if it takes some time to find the right therapist. There are many therapeutic modalities and finding someone versed in the right sort of therapy may be very helpful for the rest of you as well as your S.
Psychiatric meds of course can have side effects but also help many people. Getting the dysfunctional behavioral patterns in check, ie stopping the tantrums, will help you S learn other ways of responding to stress and give him more positive feedback from others. Medications are not a lifelong sentence necessarily, but seeing what is possible with medical management would be another tool to help bring some happier ways of interacting to your family. My sibling was not medicated, though ADD meds were suggested way back when. I remember the peace of a few days when meds were tried, and the peace that descended over our family. We were also the sort of family that avoided meds. Having more positive interactions may help your Ss self esteem, and improved focus through medication might make school a more rewarding environment.
My sibling has been struggling with the self esteem issues from her dysfunctional childhood all her adult life. Meds have made a world of difference. We were just laughing a few days ago about how naming one of her beasts -Aspergers-has brought such understanding that weird is not her “fault”, but a named syndrome to be understood.
Forgive me if this seems like excessive projection. This is a difficult row to hoe. Wishing you the best.
Having been through a search for a diagnosis for my own child (different situation–hers was health problems and accompanying serious depression triggered by a concussion) I can say that searching for a key to the health issues should be a primary goal (although I know you can’t ignore the behavioral piece at the same time–it is hard to balance the big picture with immediate relief) While we were looking for health solutions, my child was on psychiatric meds and getting therapy.
To find a psychiatrist and explore medication, ask your pediatrician for a recommendation, and be willing to pay for out-of-network in order to get quality care (we did this and were able to get reimbursed for much of it by our insurance company–you can check this beforehand)
I second the suggestion to check out PANDAS above.
Our experience was that conventional medical practitioners were not helpful. Everyone only looked at their little piece of the picture, which was never enough to get any results. The end was when I needed to argue with our pediatrician to get her to do a Lyme test. We ended up heading to an integrative medicine practice (with a board-certified doctor, though). This doctor was willing to cast a wide net and test for everything, which did turn up a problem (adrenal insufficiency) that explained many of her symptoms and was something rare enough that no one would have looked for it. Treatment for this led to improvement (but not elimination) of her issues so we ultimately went to another practitioner (“functional medicine”) who looked at leaky gut/microbiome health. Following his protocol has changed my child and led her back to physical health.
I am not saying that seeing a functional medicine practice will help your child as it did mine, just something to consider as an option.
I did share this just because, despite my firm belief in conventional medicine, I needed to go outside of that system to find the help my child needed. It was expensive (all of these practices are ‘out of network’–you may be able to get some reimbursement from your insurance company if you file a claim) but worth it in the end. And if plan A does not work, be willing to head to plan B, C and D until you find a solution that works. And it may end up being a combination of plans, A, B and C that works for your family.
Much good luck in your search for help and answers.
For so called executive functioning and adhd we went this approach. My kids handwriting went from messy to neat in 2 weeks with walking in a figure 8 and juggling balls (just 2). Her transference of looking at a blackboard and writing down on paper was bad. She couldn’t copy a picture correctly. With in weeks it was all fixed. Your situation seems more severe. Biofeedback really helped also more then we would ever think instead of medication. Her room went from messy to neat like overnight.
http://www.ledererandmargolis.com/ ask for referrals to your area. They are like the leads on this therapy they use. In Chicago the doctors and pediatric clinics seem to all refer to them. Maybe a phone consult for direction to go in will be helpful. I have referred many patients kids there with great results including my own kids.
You’re getting great advice. I would like to urge you STRONGLY to pay close attention to the sibling. In our family, the two older siblings were diagnosed as teenagers with serious mental illness. I thought our youngest, who was 12 when all this started, was doing fine, but she WASN’T. I did all the “right” things, such as keeping her informed and asking how she was doing. I eventually got her help, but she ended up in the ER with a panic attack at one point.
We have close friends who adopted a pre-teen with serious issues. The three bio kids went through majorf trauma because of him the next few years and harbor a lot of resentment against their parents, who did the best they could. Therapy would helped the kids.
Now when I speak publicly about our family, one of my MAIN points is to get siblings help!! Even if you/they think they don’t need it. It’s critical.
Bart, Pandas, multiple chronic infections - working with a holistic doc for years. On a ton of supplements and herbals to address. Not on psychiatric meds.
It appears that what you are doing now isn’t working, and hasn’t been for many years. I agree a psychiatrist and med can be very helpful. This must be miserable for your son as well as the rest of the family, and as your son is aging, time is of the essence to address it
This. Your child needs to be evaluated by a psychiatrist and put on medication that is appropriate to his diagnosis. You wouldn’t give supplements and herbals (which are unregulated, by the way) for diabetes and then wonder why he’s in a coma.
A thorough outpatient evaluation by a board-certified child & adolescent psychiatrist seems to be in order. Certainly, this would be the way to go before jumping to a therapeutic boarding school.
Have any of the professionals he’s seen ruled out bipolar disorder? It presents very differently in children than in adults.