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Spectrum Med Questions

STARTwHello profile image
41 Replies

Does anyone have experience with high functioning autism and sertraline?

My son was originally diagnosed ADHD but the diagnosis was changed last fall to high functioning Autism. He started Guanfacine last fall for hyperactivity/sensory and that has helped a TON. Stimulants we tried previously made his anxiety sky rocket.

He struggles big time with non preferred at school and goes into fight/high elevation. We tried resperidone for aggression and it helped at the end of last school year but it slowly stopped helping and he gained a ton of weight.

Our current next step is to try sertraline with guanfacine for his anxiety. Does anyone have experience with this? Or similar situations and other meds you’ve tried for anxiety and/or aggression.

Thank you in advance!!

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STARTwHello profile image
STARTwHello
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41 Replies
Knitting20projects profile image
Knitting20projects

The SSRIs can definitely help with anxiety in autism. Sometimes as the dose is being increased, anxiety can increase temporarily, but that often improves as dose increases to the target range. Our kids both have ASD+ADHD and our son is higher functioning. Task switching from highly preferred to less preferred can be a big challenge. I’m guessing the school is doing the usual behavior recommendations like a visual timer, visual schedule, reminders several minutes before, etc? We might be trying sertraline in a few months for our son’s anxiety, too. I’m guessing you’re seeing a child psychiatrist? This is usually beyond most pediatricians’ comfort levels. Abilify might be another option for the aggression with anxiety but I would probably try an SSRI like sertraline first (I’m a pediatrician actually but I leave these decisions to child psychiatry). Best wishes for a good improvement for your son and your family.

STARTwHello profile image
STARTwHello in reply to Knitting20projects

Thank you so much! Yes we are doing everything through a child psych. We do think the sertraline would help but are nervous because he can’t take a pill and the liquid is very specific the way you have to take it. It’s concentrated so you have to mix it and drink it right away with 1/2 cup of only a few choices of things. It’s not supposed to taste great so I’m not sure if that’s even a route we can go. He has a lot of refusal tendencies which I think stem from the anxiety. The school has a lot of things in place but he goes to extreme upset and aggression pretty quick over certain things and does not take correction well (has gotten better but not great). He overall is doing much better but I’m not sure their tolerance for the aggression. I do know of abilify but I have not heard great things about its affectiveness so I do think we are going to go the SSRI route first. Thank you so much!!

Bookworm365 profile image
Bookworm365 in reply to STARTwHello

Our son takes a very low dose of Abilify along with Vyvanse. He has diagnosed ADHD and has some spectrum tendencies. The Abilify was added to help with agitation (transitions are very challenging for him, for example) and to reduce aggression that he had had at school since he started in daycare. Abilify has brought that aggression *way* down. I call it a miracle med (at least for us). We have not seen much weight gain, possibly because the vyvanse decreases appetite.

The Abilify tablets are quite small. We had our son practice swallowing whole mini m&ms first (we made it a game), and it worked like a charm. I’m not sure if your child might find that tough from a sensory standpoint, but I just wanted to share. Good luck and hang in there!

STARTwHello profile image
STARTwHello in reply to Bookworm365

Ok thanks! How long has he been on abilify? We can’t do stimulants it makes his anxiety go crazy. That’s why we are doing guanfacine. We saw improvement from resperidone for a bit and then it totally stopped working. What dose of abilify is he on? Thank you!!!

Bookworm365 profile image
Bookworm365 in reply to STARTwHello

He’s been on it since late April. He started at 2mg and after about two weeks we thought it lost some effect so our psychiatrist bumped him to 3mg and that has maintained the positive effect.

We had tried guanfacine prior to the Abilify, but it gave our son lots of negative side effects (irritable, sleepy all day but challenging to get to sleep at night, nightmares, etc.)

STARTwHello profile image
STARTwHello in reply to Bookworm365

Ok does he that that at night or in the morning?

Bookworm365 profile image
Bookworm365 in reply to STARTwHello

The Abilify is taken in the evening.

STARTwHello profile image
STARTwHello in reply to Bookworm365

Ok. We switched the resperidone to the morning because we weren’t seeing any difference during the day. Is the Abilify pill an extended release do you know?

Bookworm365 profile image
Bookworm365 in reply to STARTwHello

I’m not sure if it’s called extended release but the intent is to be in their system 24/7, so I think the idea is the same.

STARTwHello profile image
STARTwHello in reply to Bookworm365

Checking back in on Abilify. We are considering this for our son. Are you still seeing the positive since last spring? Any weight gain concerns? Resperidone caused big time weight gain and wasn’t enough to help with the aggression.

Did you try other SSRIs before Vyvanse? We have tried fluoxetine and sertraline with bad response to both.

Thank you!!

Bookworm365 profile image
Bookworm365 in reply to STARTwHello

Hi there! Yes, we are still seeing the Abilify help with the aggression and some agitation. We bumped it up just slightly for added benefit, but I wouldn’t be surprised if we see a slight gain in weight as he is eating more than usual, especially when the vyvanse wears off. The only other SSRI we tried was methylphenidate and we pretty much stopped that after a week because it really seemed to be a bad fit!! Nonstimulant-wise, we tried guanfacine and saw increased irritability, nightmares, etc. We are currently awaiting results from a Genesight test to see if anything is better suited to our son.

STARTwHello profile image
STARTwHello in reply to Bookworm365

Ok this is interesting! I misinterpreted and I thought vyvanse was an SSRI for anxiety but it’s a stimulant. We had bad luck with the same stimulant!! We stopped stimulants because if it! How has vyvanse been different? How long does it last him?

My son is currently taking immediate release guanfacine. It helps with the hyper but I do think it makes him more agitated and grumpy.

Thank you!!

Bookworm365 profile image
Bookworm365 in reply to STARTwHello

Ah, yes sorry, I meant stimulant. 🤦🏻‍♀️ I’m not totally sold on the vyvanse to be honest, but our main priority was decreasing aggression and the Abilify helped with that. The vyvanse lasts until mid/late afternoon. Vyvanse helped resolve elopement at school, but I wouldn’t say I’m super impressed and do wonder if stimulants should not be used with our son (hence the Genesight test). Fingers crossed it tells us something new and useful!

STARTwHello profile image
STARTwHello in reply to Bookworm365

Ok! Thank you!! We did genesight and all stimulants came up as yellow with a 4 footnote which meant the efficacy wasn’t good and they won’t work for him as well as they would for other kids. We keep thinking it might help because he has lots of resistance to school work but the one you tried and didn’t work also didn’t work for him, it increased his anxiety a ton and made transitions harder sometimes. He was almost too focused.

He’s on guanfacine and that helps with elopement but not aggression and mania/mood. We took him off resperidone this past fall because of the weight gain and sleepiness but we’re realizing he needs a mood stabilizer for sure. Lots of mania/aggression without it poor kid.

Thanks for your feedback on abilify! I do think we are going to try it!

Bookworm365 profile image
Bookworm365 in reply to STARTwHello

Good luck!! Hoping for positive results!

Aspectmom profile image
Aspectmom

Hi,

Our son is on the Spectrum as well. For aggression we have tried risperidone (which helped the aggression, but caused weight gain), and Seroquel (also caused weight gain and didn't help too well). We are currently taking him off that and onto Abilify, hoping it helps without affecting the weight as much. The dr. also mentioned depakote as a possiblity.

STARTwHello profile image
STARTwHello in reply to Aspectmom

Hi! Curious what your experience with Abilify has been? Weight gain was our issue with Resperidone too!

Aspectmom profile image
Aspectmom in reply to STARTwHello

Hi. So far he hasn't gained weight but hasn't lost weight either. It has been helping with mood well enough

STARTwHello profile image
STARTwHello in reply to Aspectmom

Ok! Thank you!

Does he take it at night? Has sleepiness been an issue during the day at all?

Thank you!!

Aspectmom profile image
Aspectmom in reply to STARTwHello

No problem! He does take it at night and there is no sleepiness during the day.

STARTwHello profile image
STARTwHello in reply to Aspectmom

Ok thanks!!

STARTwHello profile image
STARTwHello

I have not heard of seroquel or depakote. I will look these up! Thank you!!

Knitting20projects profile image
Knitting20projects

I wonder if he could try fluoxetine instead? It comes in a liquid too. Your psychiatrist probably has a preference for sertraline over fluoxetine and obviously would know there’s a liquid fluoxetine. Maybe fluoxetine has more flexibility in what you can drink after taking it? Our kids both have feeding issues, so I know it’s really challenging!

STARTwHello profile image
STARTwHello in reply to Knitting20projects

It is way more flexible! We actually tried it last fall before guanfacine but only for 6 days. We didn’t see any change and his doctor was worried it was actually making the aggression worse. :(

LAJ12345 profile image
LAJ12345

my husband has Parkinson’s and I am pretty sure he has always had some Asperger’s type tendencies and ocd. He was put on first fluoxetine then sertraline for depression and anxiety and although initially they worked they eventually both made him manic then suicidal. If he does use them be very careful and monitor side effects carefully as they can build up over time.

I would start out on a lower dose than they prescribe then increase after a few weeks but if it is working at a lower dose stay at that level. But in the first instance if you haven’t already I would first trial a multinutrient. My husband uses Hardys daily essential nutrients with added vitamers and he does not suffered from the depression and anxiety any more so doesn’t need any antidepressants now.

Knitting20projects profile image
Knitting20projects in reply to LAJ12345

Thanks so much for this useful insight! The nice thing about the liquid SSRI formulations is they can be microdosed and increased very slowly for situations when needed. I hope your husband is feeling better after getting off the SSRIs! That definitely sounds scary, and you and he didn't need that on top of Parkinson's. I'm so glad the multinutrients have helped him! I am going to look at those for my kids. They are such difficult eaters--our son (12) would honestly eat the foods typically found on a "kids' menu" only if we let him. Best wishes to you and your family.

Gimgim1 profile image
Gimgim1

Hi, similar situation with my 10 year old son. Diagnosed last fall with ADHD, but psych Ed evaluation came up ASD (high functioning). He also started guanfacine last fall and it worked wonders. We had started Sertraline a few months later it was horrible. My son actually became worse and suicidal. We then did a GenoMind DNA test and found out his body doesn’t react well to Sertaline. I highly recommend you ask for a DNA test for how medicines function in the body. It can save you time with multiple medications trial and error. My son is now on Prozac and it is so much better. He’s happy and able to control many impulses with less anger. Task switching is easier. Get an IEP to help with accommodations at school, if you don’t have that already. All of the other comments people have wrote look helpful too! I wish you and your son the best.

Knitting20projects profile image
Knitting20projects in reply to Gimgim1

Interesting about the GenoMind testing. I still wonder about trying that for our son. It's hard enough watching him struggle without enduring the trial and error of medications. And seeing your son suicidal must have been torture for you and him. I am so glad things are better. I hope he continues to do well!

LAJ12345 profile image
LAJ12345 in reply to Knitting20projects

yes my husband had a gene test too and it did say ssri would not be good for him. It said he needed extra B2, B12 and B3 vitamins and that his vitamin d and b processing is genetically faulty.

The Hardys multinutrients at the clinical dose has the vitamins he needed and made him feel much better. I have my 20 year on it now too as he was displaying adhd type symptoms with lack of concentration, and this year he is excelling at university haven’t bimbed out of the last 2 years at school.

Littleme2000 profile image
Littleme2000 in reply to Gimgim1

Whole heartedly agree with the GenoMind test, we did this as well and it helped us w stimulant selection, antidepressants if/when he needs them, and confirmed no Atomoxetine, on which our son had bad side effects. Found MTHFR mutation w test (so switched multivitamin from folic acid to methyl folate) and also try to avoid enriched products. Additionally, saw a functional doc who started him on Sam e, which has really helped w anxiety and mood. We’re doing low dose guanfacine XR daily and low dose Focalin XR for school, and combined with the supplements, he is finally coming into his own. Good luck on finding what works for your family ❤️🙏

STARTwHello profile image
STARTwHello in reply to Littleme2000

Thank you! How did you go about doing the test? This sounds like it could be very useful! Through a child psych? Is it a blood draw? How quickly did you get the results? Sorry for all the questions. :)

Littleme2000 profile image
Littleme2000 in reply to STARTwHello

We went through our functional doc who put in the order, and Genomind worked with our insurance for reimbursement. It is an easy cheek swab, no blood. I feel like your child psychiatrist could put in the order, I think anyone w an MD can. I hope that helps!

STARTwHello profile image
STARTwHello in reply to Littleme2000

Thank you!!

Aspen797 profile image
Aspen797 in reply to Littleme2000

Just wanted to say that your story is exactly ours! Same mthfr findings and same meds and supplements and same good results. So grateful for the Genesight testing results that led us to this path.

Littleme2000 profile image
Littleme2000 in reply to Aspen797

Not sure if you found this too, but our son had high copper, low zinc, so functional doc prescribed a zinc supplement as well. He was always sick before and finally seems to have a normal immune system, thankfully! Appreciate you sharing, always helpful to know that we’re not alone in this journey and that there is hope 🙏.

Aspen797 profile image
Aspen797 in reply to Littleme2000

I have learned so much from this great community! We have not had his copper/zinc checked, something to make sure to mention to his doctor next time. The multivitamins/micronutrients we give our son does contain some zinc (no copper) so there is that going for us in the meantime! Thank you too for sharing, it is so helpful and wonderful meeting others on a similar path!

STARTwHello profile image
STARTwHello

Thank you thank you for this amazing community!! We have a test kit being shipped to our home within 2 days to check what meds will work best for my son. I wouldn’t even know to ask for this without the awesome support on this site. You all rock!!

LAJ12345 profile image
LAJ12345 in reply to STARTwHello

hardynutritionals.com/studi...

Have a look at the research on multinutrients for the brain.

Here is a professor and clinical Psychologist from Canterbury uni in NZ who has done clinical trials on Hardys DEN and it’s effect on ADHD and PTSD.

youtube.com/watch?v=Ipuspwk...

LAJ12345 profile image
LAJ12345

if you have time to listen to podcasts while you do your housework etc I would recommend listening to these very long ones. And also start going through the ones on Ari Whittens Energyblueprint web page on natural health. It is a total change in the health paradigm if you ask me. He advocates going back to eating and replicating as much of the environment that our ancestors lived in. Ie try and eat as natural diet as possible, lots of vegetables, eliminate additives in food, eat more whole foods and vegetables, avoid blue light from screens in the evening and try and get outside light, or at least mimic it - blue in the morning, red at night. Eliminate any toxins in the diet or environment. He thinks much of todays increase in illnesses is due to our change in diet from what we traditionally would have eaten. Because genes do not “evolve” so quickly it must be our environment that is making people ill.

I know it’s hard to do with a child, I am not sure how old he is, but I would try getting the whole family slowly over to this traditional food diet as I believe it has actually been key to helping my husband who has Parkinson’s regain his mental health, where drugs have almost killed him. And it certainly will make the whole family healthier.

4 Podcasts by Dr James Chestnut interviewed by Ari Whitten from Energyblueprint.

Really interesting but long.

Nutrition and Lifestyle vs. Medicine – The Best Approach to Your Health Part 1 and 2 with Dr. James Chestnut

theenergyblueprint.com/dr-j...

theenergyblueprint.com/dr-j...

The Human Zoo, Real Root Causes, and Why Treating Disease is Not The Same As Creating Health with Dr. James Chestnut

theenergyblueprint.com/heal...

Eat Well, Move Well, Think Well – The Foundation For Longevity with Dr. James Chestnut

theenergyblueprint.com/eat-...

Pink-tulip profile image
Pink-tulip

Sertraline and guanfacine works well for my little one.

STARTwHello profile image
STARTwHello in reply to Pink-tulip

Thank you for sharing! We just started sertraline. How long did it take you to see positive results? For guanfacine do you do the XR extended release? We currently are doing the immediate release because they can make it into a liquid but might switch to XR.

Do you mind sharing your struggles before meds and what you saw positively after?

Thank you!

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