new difficulties with DS15 in school - HFA

[lulubelle]

My ds15 is new to high school this year.  He has Aspergers.  He was getting too difficult and resistant at home, so I decided we needed help.  DS seems to manage to morph negativity where ever he is.  He is an extreme half glass empty guy.  He is smart, but has limited capacity for what he can handle.  Home school was sucking the life out of him in one direction, and now public school is sucking it out of him in another.  He feels like he has nothing left after keeping up with school.  He is socially, academically, and physically exhausted.  He can't enjoy much at home.  He can't enjoy a movie that he normally would have loved and never would have stopped talking about it.  Now, he just says he's not sure if he liked a particular movie because he just doesn't feel anything.  When he was homeschooling, I would say it was the opposite problem - his highs were getting in the way of accomplishing work (he has always hated to be told what to do and how to do it).  Now his lows are preventing him from enjoying his highs.  It's really painful for him and for us to watch.  He is actually more motivated to accomplish work at school, and that has been really good.  He sees a therapist every other week and she is helpful a bit.  She is a social worker and doesn't think medication is the way to go.  I'm not so sure.  My sister is a social worker therapist and she said she used to be the same way until she has seen some medications be truly helpful.  Or, do I just hope he matures a bit and learns to hopefully cope better - his moods seem to change on a dime.

Just wondering if anyone has a child that has experienced some of this and whether anything has helped.  Thank you.       

[Lecka]

I have two suggestions.

One, is it possible for his class load to lighten in any way?  I have a son who is in middle school, and he is able to decline some electives in order to have more study halls, and he has 3 study halls right now as a 7th grader.  That is over two days because they have some kind of block schedule, but that also means they are long breaks!  I did not like it at first because he is not taking music (except he did take a general music class for one grading period earlier this year...... it was fine but he would rather have study hall than another music elective).  Anyway, it is really good for him.  He has long times in the day where he can sit and read a book, and it takes a lot of homework pressure off of him.  

Dependig on his future goals there might be some very easy online classes he might be able to take in the summer for things like a state history credit, that some students will do to free up room for another AP class — but it might make room for a study hall for him if it would be helpful for him.  

Two, I would not quit with the social worker he sees, having someone a 15-year-old will see is really good!  But my cousin has HFA and we have had to learn the hard way that co-morbidity for anxiety, ADHD, and/or bipolar disorder are all very high as far as percentages.  I have seen numbers like 1/3 for bipolar disorder, 1/2 for ADHD, and 4/5 for anxiety.  It’s hard to know how accurate numbers like that are but those are the kinds of numbers people say.

My cousin is diagnosed with bipolar disorder and I was skeptical for a long time, it didn’t look the way I thought it was supposed to look.  Well partly I wasn’t seeing his range of behavior, and partly it wasn’t the way I thought.  

But I think that whole area can be looked into, see if you can get a referral.  You can ask at the doctor and/or a school counselor might have names or suggestions.

But it is not an either/or thing where you would stop with the counselor he is already seeing, while that is going well.  It is really nice he will go and is open to it, and it sounds like has a positive relationship with her.  That is not so easy to find sometimes!

Also sometimes I don’t think people can find a “one stop shop” for counseling and medication, only a few people may be allowed to prescribe medication and so they may book up their practice with prescribing and medication management, and then counseling may happen with a separate counselor.

That was unexpected to me, I thought the two things would happen more with the same person, and the medication lady does ask questions and talk but it seems more just in a “are the medications working out way” and there is not time for more.  But there is a shortage of people who can prescribe medicine in my hometown and then fortunately more options for counselors.  

[lulubelle]

Thanks Lecka, that is super helpful and I totally get what you are saying.  He's on an IEP and he does have regular special studies, but I feel it is not enough.  I tried to get them to have his art credits taken over the summer, he will need 8 to graduate, but the school refuses at this point.  I managed to add one more special study and I'm hoping that his schedule in the fall will be too full for him to fit the art in.  He does need as many studies as he can get.

I've also thought many times of bringing him to see a specialist for co-morbid issues.  Bi-polar may fit him.  I will get working on an appointment for that this week.  Our insurance stinks around here, so our options are slim.

 

 

[PeterPan]

It sounds like meds need to be on the table, but meds come with their own complications too. How we've handled the mental health side so far with my ds is to run genetics, which found some things that we were able to treat that got us far enough that we may, so long as we continue to have compliance, be able to get by without meds. After all, it seems reasonable to say there's a physical explanation for the mental health symptoms. It's not voodoo or mysterious.

Anyways, there's a lot of discussion of bipolar being connected to methyl levels. You can read about overmethylation (which isn't really a thing but a status, having too much methyls in your system) and niacin. You'll see blogs where people are explaining using niacin with dramatic results.  (I don't use no-flush, that's unnecessary and linked to liver problems.) So for the could I get him more stable NOW, what is cheap that I could take NOW, the niacin can be an answer. If he's an under-methylator (which is a thing, the MTHFR gene defects), it will make him feel worse. But if he's overmethylated and that's what is causing his symptoms, he may get noticeable improvement on niacin.

So then we ran genetics, because you want to know WHY his methyl levels are high. So far we've identified VDR (vitamin D receptor) and THP2 (turns tryptophan to 5HTP) as both defective in my ds. We put him on those things, got the levels balanced (takes some work) and the mental health symptoms improved dramatically. 5HTP converts to serotonin and melatonin, so when you have that profile of anxious with depression and insomnia, it's a logical piece to be checking. It slurps methyls in that process, helping stabilize moods. The vitamin D pulls methyls off methylcobalamin, so it's another way to bring down the overmethyl levels and get that resulting behavior stabilized.

Maybe it's not the cause. I'm just saying if you google autism and bipolar, bipolar and methyls, bipolar and niacin, that's what you're gonna be reading. And if you're saying you are looking at meds and not knowing options, well that's the option we found so far. It's not terribly expensive to pursue. Otherwise, we would have had to go on serious meds, because ds was scary. My concern would be doing the meds with a teen and having him not like the side effects. Then you've got a whole other issue. (compliance, turning 18, what happens if he goes off them)

He's almost done with his school year, right? That gives you the summer to work on the mental health side, bringing in either genetics or meds or both. Your idea of doing credits over the summer to loosen up his schedule in the fall made sense. What is the school complaining about? Do you have options where you can take them over the summer at another school and transfer the credits? Might be worth it, even if it's a hassle. 

Also, you might think about language testing. Some of these kids have trouble getting their thoughts out and it shows on stuff like the Test of Narrative Learning. So the school might not be doing language intervention because they just assume he's fine, being so much more verbal than many kids with higher support levels of autism. That's how our school shafted us, saying he didn't have language issues because he was verbal. We got it tested and then it shows. Not gonna solve the mood stability or the social exhaustion, but it might help something. It would be something they could test now and you could get intervention for this summer.

[lulubelle]

Thanks Peter Pan, how do I ask for genetic testing, just ask his regular pediatrician?  So far, the school says they will not take transfer credits from anywhere.  They will only consider make up classes after he is already behind.  Does a school test for language issues?

[PeterPan]

You just go to 23andme and run it. You can buy their cheaper kit, which uses the same chip as the health version, and then you upload the raw data directly from there to places like promethease, knowyourgenetics.com, etc. We've had some threads on understanding your results, where to look. It's a little bit of work, yes.

I've got family members on meds, so I know their utility and their consequences. That's why I've been so passionate about this genetics route and trying to find actual explanations, underlying physical causes of the stuff. Compared to being on risperidone or something really serious, I don't know, the effort I've gone to with the genetics is just nothing. 

So yeah, you can order your 23andme kit from amazon, get it mid-week, send it back, and in 3 weeks you'll have some results that you can look through with other sites to try to target things. That will be your timetable. It's not fast, but it's not terribly slow either. And for us, once we found the answers, it was all going up. We saw subtle improvements quickly, and the effect of having the pieces in place BUILDS. So he's better every day, every week. 

[Innisfree]

5 hours ago, lulubelle said:

Thanks Peter Pan, how do I ask for genetic testing, just ask his regular pediatrician?  

This format is so screwed up, but I can't seem to fix it. What's below is part of my answer, not lulubelle's  quote.

Quote

Bolding to distinguish my answer from your question, because for some reason I can't type outside the quotation box--

Does your ds see a developmental pediatrician? 

My dd's dev ped practices at a university hospital. When I asked her about possible benefits to genetic testing this spring, she said sure, that's standard of care for any new asd diagnosis now. Since we haven't already done it, she gave us a referral to the hospital genetics department. We'll get the testing done this summer, and have a consultation with them beforehand and get questions answered afterwards. I'm really curious to see what we might turn up. Anyway, that would be one possible route you could go.

[PeterPan]

29 minutes ago, Innisfree said:

My dd's dev ped practices at a university hospital. When I asked her about possible benefits to genetic testing this spring, she said sure, that's standard of care for any new asd diagnosis now. Since we haven't already done it, she gave us a referral to the hospital genetics department. We'll get the testing done this summer, and have a consultation with them beforehand and get questions answered afterwards. I'm really curious to see what we might turn up. Anyway, that would be one possible route you could go.

That's interesting! The beauty of the 23andme testing is how much you get for so little money. Around here, hospital anything is very expensive. I was talking on another list with someone who said they did (very expensive to them) genetic testing through their hospital and they learned squat, just the slow metabolizer gene that (of course) shows up with 23andme for $69. I felt bad for her, because she had serious issues on that surely would have shown up and was just like well there can't be anything more because the hospital said they tested. I don't know what the hospital tested, but it was sort of pushing absurdity. 

So if your insurance covers it, that's awesome. But if you're going to be paying huge copays, the $69 test through 23andme is gonna start to look really good, really fast. But yeah, I'd love to hear what they come back with and if they say anything insightful. I've given the link before with the site running 83 genes for autism for $3500. A lot of them are already run by 23andme. And it would be interesting to know if they're just looking for that or if they're actually looking at the methylation and all these other issues that run with it that are affecting kids. Or better, the curious question is whether they're going to do anything with it or just gather the data. The SPARK study is gathering data, gathering data. There's a lot of that going on. 

But yeah, that will be really interesting if they actually look deep enough to tell you useful things!

[Lecka]

We didn’t do that genetic testing, I just didn’t want to.  My understanding is it could identify fragile x and some other named things like that, and it might help us to know if seizures wet going to be likely in the future.

Its not the same kind of thing as 23andme.  23andme looking for a lot of information is on the alternative medicine side because it is so new and they are looking at correlations (or this is my understanding) and it’s not known like stuff about fragile x is known.

I know someone who got tons of helpful info from the genetic testing because her daughter has a certain number deletion and they belong to a Facebook group and travel to Massachusetts to be part of a clinical thing for children with this number deletion.

The only people I have known irl to get helpful info have been kids who have associated medical problems and unknown or unexplained medical issues.  Stuff like they have really bad allergies, seizures, major trouble eating, muscle problems, gastrointestinal issues, and things like that.  

Its one of those things maybe we will do it later but I am not interested in finding out.  Also my son doesn’t have any medical issues and we are not having any more children.  

Its just one of those things I would rather not know at this point.  

[Innisfree]

2 hours ago, PeterPan said:

That's interesting! The beauty of the 23andme testing is how much you get for so little money. Around here, hospital anything is very expensive. I was talking on another list with someone who said they did (very expensive to them) genetic testing through their hospital and they learned squat, just the slow metabolizer gene that (of course) shows up with 23andme for $69. I felt bad for her, because she had serious issues on that surely would have shown up and was just like well there can't be anything more because the hospital said they tested. I don't know what the hospital tested, but it was sort of pushing absurdity. 

So if your insurance covers it, that's awesome. But if you're going to be paying huge copays, the $69 test through 23andme is gonna start to look really good, really fast. But yeah, I'd love to hear what they come back with and if they say anything insightful. I've given the link before with the site running 83 genes for autism for $3500. A lot of them are already run by 23andme. And it would be interesting to know if they're just looking for that or if they're actually looking at the methylation and all these other issues that run with it that are affecting kids. Or better, the curious question is whether they're going to do anything with it or just gather the data. The SPARK study is gathering data, gathering data. There's a lot of that going on. 

But yeah, that will be really interesting if they actually look deep enough to tell you useful things!

I hope they will be able to tell us something useful. Obviously I don't know; I'm just hoping they can help with interpreting all the information and maybe we can pull out something useful. I'd love to be able to target medication more effectively, or better yet, get rid of some medication in favor of maybe some dietary supplements. 

We're hoping insurance will cover this with just a copayment. If they don't, the doctor said it would be about $350 at most. I figure if we end up having to pay, we'll ask a million questions and make the most of our consultation!

[Lecka]

We don’t have any medications or anything, which I think makes a big difference.

At the time too I had this impression like they could tell me if my son was going to start having seizures when he was older ———— and I would rather not know.  I just assume he’s not going to have seizures.  

I honestly feel like — I can find out something that makes me sorry for my nieces and my kids as far as them having children, or I can find out my son is probably going to have seizures.  I don’t want to deal with either one and I don’t worry about it, so I don’t have a sense like it would relieve me of worry.

I think if I was reasonably expecting something helpful in the short-term I would want to do it!

[Innisfree]

Lecka, that makes perfect sense.

I do worry about whether, down the road, having this information might cause problems. Insurance issues, for example, might crop up. But right now, I can see that the medication path we're on may not be sustainable. When she's old enough, dd is very likely to refuse to use the meds. So an alternative has very strong appeal. We all just make the best choices we can and keep our fingers crossed.

[PeterPan]

Innisfree, obviously we haven't done the hospital testing. I can tell you some basic stuff I didn't know or wouldn't have realized. There's whole exome (like the WHOLE sequence) and then there are SNPs, which are the single nucleotide blah blahs, ie. pairs of alleles on a specific gene. So if they run whole exome, that's wicked expensive. I'm really curious to see if that's what the U of M is doing for their Genes for Good study. I haven't gotten back mine yet and I keep waiting, tick tick. Places like 23andme run SNPs and they have a computer chip (chip 5, whatever) driving what SNPs they look at. Those SNPs will have RS numbers and then the genes they're part of will have overall names, chunk names, etc. So like for the vitamin D gig, there's the VDR gene (vitamin D receptor) and then fok or taq and then the RS #s and then what your results were (particular alleles, which they might tell you about with +/- or with the actual letters like A,G, T, etc.). 

So it sounds like a lot of gibberish, but those are just some starting questions you could ask. Because, think about it, if they're running particular SNPs or genes, not the whole exome, then which genes? If you can get whole exome for $350, my lands, do it. But if they're running SNPs, then they aren't turning up data on things they're not looking for, kwim?

On the seizures thing, yeah, stuff turns up. On the syndromes underlying some presentations of autism, sure. But what we're talking about is nitpicky. It's stuff that someone without autism could have. They might not be running these things, or they might. It's just stuff you could ask, so you don't wait for the appointment, wait for the testing, wait for the appointment to discuss the testing, and then 2-3 months from now realize they were never going to run stuff on methylation, vitamin D, tryptophan, etc. It's just stuff you could ask upfront. Like Lecka says, they might be screening for these sort of syndrome diagnoses and not even going down to this nitpicky level. 

We had some genes for myoclonic seizures in my kids and we have a family history (not on the side with spectrum traits, btw) of funky blackouts that they treat as seizures. I don't know, I'm with Lecka that I don't tend to live my life worried about that. There are plenty of people with spectrum diagnoses who don't have these syndromes, don't have seizures, etc.

When you say you want to use genetics to treat mental health issues, I don't know. They're doing it easily now for testing to predict what meds they might not respond well to, that kind of thing, but when you say you don't want a med but want to identify the actual underlying cause, I'm not sure they're there. It seems like even when you google and look in the alternative camp it's still pretty formative. A lot of the genetics studies right now I'm seeing seem more interested in creating assays for autism (finding biomarkers, things they can run when a kid is 1-2) or for predicting drug response (new or rebadged). There's  really innovative company the Epiphany blog mentioned that is using genetics to identify already available, FDA-approved drugs that might help kids. There's some really phenomenal stuff going on, but it doesn't seem quite able to do yet what *I* want. I want to know exactly what caused it and exactly how to target it and stop all the in-between jibberish of trying meds that don't actually fit the underlying problem. And I'm not sure they're quite there yet. If they are, let me know. That would be worth a lot of money to a lot of people, lol. But they're really different questions (what medications are likely to work vs. what is the underlying cause that we could treat).