Resources, family therapist, school for anxious, gifted, possibly suicidal ADD boy: HELP!

[Anonymous]

OP- Read your post on but skimmed in between. Hugs to you first of all. Second, I can tell you for a FACT that the ship has not sailed on the GT/LD program, and agree wholeheartedly that you should talk to Marisa Stemple if you are interested. I don't know if the person you spoke with was uninformed (many are about these centers), but there is NO application process. Perhaps the person confused it with the highly gifted center. MCPS is a big place please do not assume that any one person who picks up a phone could answer this type of question for you with any authority.
If you need a neuropsych (which I would STRONGLY advise over the school testing), Kennedy Krieger and Children's Hospital take Blue Cross Blue Shield I believe. You can wait and pay for Stixrud too. He is great too. However, if finances are at all a concern, you may want to save it for an advocate to take to the IEP meeting. Your call.

[Anonymous]

Anonymous wrote:To OP - I read your opening comments but don't have time to read everything inbetween. I just want to share some info with you that might be helpful. First of all, thanks for mentioning the encopresis - I learn something new on dcurbanmoms every day - my DC has it although the pediatric gastro. did not put a name to it. Thank you.

Here's my message. Our pediatrician completely missed the fact that our DC had Aspergers/anxiety/ADHD. From birth DC had GERD, an unusually red behind, gas, pain in the gut. I kept complaining. Pediatrician blew me off. Testing (full NT) 4 times showed high I.Q. and possible executive functioning problems. Then exec. functioning problems two standard deviations off norm. Then ADHD. It was only on the fifth round of testing (when I insisted on blind testing) that we got the Aspergers diagnosis - which is absolutely correct.

Next I start reading on Aspergers and find the link to the gastro issues. I ask ped. for referrals and get hooked up with someone who does everything BUT a simple x-ray. I research it on my own and called Children's Hospital in Boston and ask the no. 1 research on the link between aspergers and gas/leakage/abdominal issues for a local pediatric gastro. DH and I take DC in to see him. He examines DC and says "well, I'm sending DC downstairs for an x-ray but I predict that DC is full of fecalomas (hardened, old balls of stool); I can feel that her rectum is already extended". Downstairs we go. Get the x-rays. Even I, a non-doctor, can see the fecalomas in the x-ray. We do a full clean-out. DC is much better. Ped. gastro. says good but this is not the end - DC's colon is distended and will never properly return to normal size because this problem went unchecked for more than a decade. He was right . DC is full of fecalomas again so another clean-out is due plus daily miralax treatments.

So what I'm trying to say is that we've been there. Our DC has soiled himself. WE found out the answer was Aspergers and untreated fecalomas. DC has been on zoloft and sertralene for five years. DC also complains about every little ache and pain. DC is extremely bright. We had an IEP which helped tremendously but it's still a struggle.

Does your child sit on the toilet for a long time? Ours did and we didn't understand why. We also didn't understand why DC couldn't tell us whether or not it was diarrhea or constipation because it was both.

Let me know if you want me to post the name of the ped. gastroenterologist.

Good luck. I am praying for you.

Could you please give the name of your gastro? Thank you!

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP, please post an update when you can and let us know how the zoloft is working out.

I do think a 504 would be in order and additional supports. Having a teacher say things like 'He's bright but needs to take responsibility" is not really helpful. I totally agree with the PP who said an educational plan is paramount. So much self esteem gets wrapped up in school and feeling like you can't perform or make friends is horrible for kids this age--it is why kids this age do commit suicide. WHile your son may be a bit of a drama queen, you must take the suicidal ideation as a very real expression of serious distress (which it sounds like you do, of course--sounds like you are doing everything you can).

I would also have a conversation with your son about learning differences and brain differences: acknowledge that every one's brain works differently. It is harder for him to focus and easier for him to feel anxious and sad. This is genetic, hereditary and not his fault. It is also treatable, to a certain extent, but he needs to be a willing partner on it. if you think he's be up to it, have him report on thoughts/feelings/stuck places. If not, work with him (and a family therapist?) to create a schedule, work on motivations (like minecraft). If you could get a homework tutor even a few days a week, it might help him stay on track, is that a possibility? Iwould also see if said tutor can get him to take the ritalin if necessary (why does your son refuse it? does he not like the idea of it, or the feeling it produces?).

about 'outdoor' time--what about a class that involves physical activity? we tried many things before finding martial arts to be effective and pleasurable.

encopresis: is he taking fiber supplements? We found mixing them in a smoothie to help. Hard when your kid eats only crackers, but we came up with a 'must include' diet and then let him have a lot of 'not so good for you' things as well, as long as the healthy, fiber and protein based things were consumed.(yes, sugar but after broccoli).

finally, where is your spouse on this? Do you have support? you two need to be unified in your plan.

hugs to you. its a hard, anxious road. I wish you the best and some serious improvement for your son.

I agree with what this PP said, especially the approach about "everyone's brain works differently". We try to emphasize to our ADD/LD child that school is designed for a certain kind of brain. Kids who have a brain close enough to this, will generally do well in school without having to try super-hard. Doing well in school doesn't equate with being smart, necessarily. Just take a look at the wall in the waiting room of the Lab School, which is covered with pictures of Lab School honorees who had learning challenges growing up and became successful adults who made unique contributions to society. Einstein and Thomas Edison's teachers thought they were stupid when they were kids! The brain is infinite in its variation and much of how it works is still mysterious to us -- just read the new articles coming out every day on new brain research! Even when kids have trouble keeping up in one area, they often have strengths in another. Our LD/ADD child is very observant, a quick deducer of conclusions, and can remember and reproduce music better than other kids his age. We try to point out these strengths as much or more often than we (have to) point out the weaknesses to be remediated. Our DC knows that for every fact an concept, there are multiple ways to remember/learn/understand. School generally only teaches one of these ways. Atypical kids have to learn how to identify their best ways of learning in order to get around a not very flexible school system. Self-advocacy takes time (and successes) to learn and self-deploy, but it is critical to future success and independence.

In this way, there is nothing to fear in a "special school." Our DC is in the top 1% in terms of IQ, was beginning to exhibit the same anxiety and distress you describe (negative self-talk, sadness, anxiety in school, avoidance behaviors, etc.). When we finally pulled him from public school and put him in private school it was an immense relief to him. All that anxiety and school hatred disappeared. He even recognizes that the new school thinks that he is more capable than the old school, but they just teach and ask him to demonstrate his mastery differently.

As PP said, a tutor might be helpful until you get the school on the program (IEP or 504). But, I encourage you to think about what kind of tutor --substantive and/or organizational. There are both kinds.

Also the teacher who said, "'He's bright but needs to take responsibility," is exhibiting classic disability stigma. This is the experience of many parents of kids, particularly those kids who are bright. It is part of a long history of stigma against brain differences -- both learning differences and mental illness -- where society has stigmatized these differences as "behavioral choices" or "character weaknesses." If I had a dollar for every time a teacher has thought or said something along these lines about a kid with a disability or diagnosis, I'd be richer than Oprah. It troubles me that you have mentioned that a teacher said this, and that a teacher shrugged and said everyone has ADD at a meeting. Both of these together are signs that the overall environment at your school tolerates this stigma/discrimination. It is something that I would consider documenting via letter to the school principal and the 504 coordinator for your county.

PP - what school does your son now go to? DA ia struggling in public school so am looking for options. Thank you.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

PP - what school does your son now go to? DA ia struggling in public school so am looking for options. Thank you.

Siena has been a great fit for our DC, who has a language-based learning difference in addition to ADD/Inattentive. Addressing the language-based problems with specific instruction geared toward the language learning difficulties and support for the organizational challenges in a positive environment is what has made a HUGE difference in our DC's anxiety and negative self-talk.

[Anonymous]

Anonymous wrote:OP again - great, just got a response from DS's teacher after waiting since Monday for a response.

In closing, she said, "[your DS] is a very intelligent and lovely youngster, but he needs to accept responsibility for his work and stay on top of due dates and deadline dates."

Yes, that's true, AND he's going to need reminders in order to do it until (hopefully) he can assimilate this and improve his executive functioning. (I didn't respond that way but I did call the counselor).

This is a typical response from a teacher (no offense to teachers out there; we've had many great ones). If you child has ADHD/executive functioning disorder, it's not a question of "accepting responsiblity" although that's a part of it. But he has a disability that may prevent him from doing this without appropriate supports. It's like telling a person with hearing impairment that he needs to accept responsibility for hearing better.

ADHD and anxiety/depression often go together. I agree with others who say Zoloft was a huge help.e

[Anonymous]

Anonymous wrote:

Anonymous wrote:
5. Re the neuropsych testing - wouldn't it be too much for my son to do both neuropsych and school testing? He is worried that something is "wrong" with him, he's afraid I'm going to send him "to a special school" (though I've not talked about it). From the threads, I've definitely gotten the perception that private neuropsych work-ups give you more and better detailed information that is helpful in parenting and treating the child. His increasingly dark, suicidal rants are prompting me to do whatever I can at this point to get to the root of the issues. That said, when I approached the school counselor in the fall, she said she'd work to start him on a path to get the testing for an IEP...but after the minimal supports put in place (binder checks, etc) his grades picked up to straight As again. To complicate matters, he had a lot of absences in the fall (which I'm belatedly realizing were probably psychosomatic or psychogenic) and the teachers at the group meeting blamed his absences on his poor grades. When I brought up the ADD, at least one teacher murmured "They all have ADD." [meaning all the kids -- or parents -- complain of ADD]. I really did not want to "label" my kid and hoped he could make it through as I did, but now I see he needs some more supports. Long winded way of asking, should I put off the private neuropsych testing and get school-based testing with the school counselor's help because then at least the school issues may resolve? If I do school-based and it's not sufficient, can I do private too? My son is going to HATE all of this, so I really don't want to put him through anymore of this than absolutely necessary. He also HATES when the school counselor comes to talk to him, HATEs when the teachers ask him about organization and complains to me that he just wants to be "left alone." And he screams at me saying I'm too "overprotective."

Thanks again!

OP, first, some hugs. Re Neuropsych testing, in our experience (just ours), you don't get a heck of a lot more necessarily. DS had neuropsych testing at Kennedy-Krieger in 3rd grade (he had an IEP before that for ADHD). The report was really mediocre and the recommendations were stock recommendations that his school largely was doing already. Really, very little insight. DS was recently re-tested through school and, while the school report has its own flaws, overall it was a better, more comprehensive write-up than the Kennedy-Krieger report was. A long way of saying, the benefit of neuopsych testing just depends on a lot of variables.

DS is a grade younger than your son and is just falling apart this year. Our DS is extremely resistant to help but cannot do most schoolwork -- at school or at home -- without it. He has taken Prozac before and it was helpful -- and likely is going to be going back on it because anxiety and possible depression are having a major impact on his this year. Wishing you a good outcome through this difficult journey.

[Anonymous]

Op - you and I have the same child. I'm so glad you opted for zoloft. My son (same age) has ADHD and struggled with anxiety his whole life, and then with suicidal thoughts for about 6 months before we agreed to put him on Zoloft. It has helped his anxiety and depression immensely. He sees Dr. Maureen Donnelly and she has been a lifesaver for us. He has also taken part in the NIH study on ADHD, which was amazing.

Regarding the school situation, my son is in the MoCo GT/LD program, which he started in 3rd grade. ES was fantastic, and he felt so good about himself. MS however, is an unmitigated disaster. Steer clear!!! We are looking at options for next year because I don't think my son could live through another year of such a poorly run program. Essentially he is in advanced classes (fine), but without any supports whatsoever. He attends Lee, and the GT/LD staff is incompetent at best, damaging at worst. There is very little in the way of positive reinforcement, supports, or any kind of accommodations, despite the fact that my son has a very robust IEP. They simply ignore his listed accommodations. Yes, I know that legally they are required to adhere to the IEP, but they just don't (no assistive technology allowed, no assistance in helping him improve on executive functioning, no reduced work load when he's shown mastery, nada). We are considering privates, and also his home school which will hopefully work within his IEP. At least he would get electives and other extracurriculars there (the GT/LD students at Lee have no electives or extracurriculars due to "scheduling".) He feels so beaten down at school, and hates going.

Anyway, I digress. I encourage you to look at privates, or at least getting a full neuro work up in prep for an IEP or 504. I highly recommend Stixrud. And then find a good psychiatrist who can see him for behavioral mods as well as medications. And a family therapist is a good idea. Yes, we've spent a ton on all of this, but I've seen what happens to kids when they don't get the proper interventions. Especially at this stage of their lives.

Good luck and lots of hugs.

[Anonymous]

Didn't read the entire thread, just the first page. Sounds very difficult, OP. I would look at your child's diet. You may need to take him to a doctor who specializes in ASD kids to get the right treatment. "The Spectrum" is just a catch-all for kids who exhibit similar symptoms, but the range is enormous. We never took our child for a neuropsych evaluation, and DC is cured after 10 years of alternative treatments. The gut problems are very typical of an ASD kid; high intelligence, hyper-articulateness and difficulty with organization are also symptoms, particularly of Aspergers, which presents in a myriad of ways. The suicidal talk is evidence of frustration, so your child does need to feel more in control of his health and his emotional well-being. He may need testing for gut bugs and antibiotics. It's all very time-consuming and mostly not covered by insurance, but for us, gut bugs were a huge problem that went away after treatment with (incredibly expensive!) antibiotics, getting rid of sugar (which feeds yeast) and anti-yeast medication. Fortunately the drugs were covered by BC/BS. But "regular" physicians will know nothing about how to treat this stuff. You have to go to "alternative" or "integrative medicine" providers. You can look on the DAN website for some names. We didn't use anyone around here, so I don't know whom to recommend. U of MD has an integrative medicine department, and there may be others. Good luck, and hugs OP.

[Anonymous]

This is OP back after a long break. Apologies for not posting earlier, I was just too overwhelmed. Thanks again to everyone who reached out with helpful advice and said prayers for us. You were so helpful, all of your posts really got me through this crisis. I've posted a couple of times in new threads because I was worried about posting too much identifying information. I'll continue to do that and may post back here too from time to time.

To the posters looking for a pediatric gastroenterologist - Dr. Kerzner with Children's. He's amazing. Best "bedside manner" I've ever seen in a doc.

To the posters who asked for an update:

- I spoke to him quietly and calmly about the suicide threats and he denied he was serious, said he was just trying to get my attention....which simulaneously relieved me and angered me. I told him gently that it is NOT OK to fake suicide threats, but I didn't want to come down too hard in case he was not telling me the truth, and trying to cover his tracks - I didn't want to make him feel any worse than he's been feeling. This was against the advice of my own psychologist, who encouraged me to lay out clear consequences for his "fake" threats. I was inclined to go to family counseling, but his psychiatrist is afraid we will overwhelm him, so I've held off for now. We'll revisit it.

- We put him on zoloft, liquid type. He complains about the taste "burning" at the end, so I keep mixing it with more ginger ale, but it's a horrible fight to get him to take it. Any tips? It's too early to see any change. (And the we is my husband - he's engaged with this, but like a lot of moms, I take the lead).

- Dr. Kerzner is going to see him every three months for about a year and a half to make sure he kicks the encropesis. DS has been great about followign the Dr's advice - I've seen a big change there, thankfully, but sadly I've learned I'll have to stay vigilent - it's just not "cured" overnight.

- It's time to pursue neuropsych testing. Would not have reached that conclusion without all your heartfelt posts, so thank you.

- Does anyone know how MCPS designates the "gifted" part of 2e? Is this done through a specific IQ test, and what is the cut-off?

Thank you again, so much.

[Anonymous]

Can he take a pill? If he can't, yet, there are these cups with lips for the pill that taught both my kids, including my DS with an ASD, how to take a pill within a day.

[Anonymous]

OP again - thanks PP, pharmacy just recommended I mix it with chocolate syrup and club soda, so will try that tonight. Last night it took so long to get it in him that the zoloft actually started to congeal into little particles. It happened twice. As I was administering it, he was threatening to run away and screaming and gagging. Total freaking nightmare.

[Anonymous]

Thanks for the update, OP. Glad things are moving in a positive direction. I second the recommendation for a pill rather than liquid. We taught our kids to take them using Nerds candy. They come in a huge range of sizes and we started by having them swallow the smallest first (and, of course, eating a few in between). Best of luck.

[Anonymous]

op: our son won't take a pill and is on .25 of zoloft. We stick it in a small piece of candy. I will shove it into a hershey kiss or mini sized milky way/snickers. He eats it all in one bite. good luck to you.

[Anonymous]

8:36 again and this is what I was referring to:

http://www.amazon.com/gp/product/B000NJJ3C4/ref=pd_lpo_k2_dp_sr_1?pf_rd_p=1535523722&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=B000ETOFDA&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=1NWMKP8C3HEWT3K46MB8

There are other types as well.

[Anonymous]

OP, just checking in. How are you? how is your son?