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I agree with PeterPan.

And I will just throw out there that having a teen on meds is different than with a younger person. I mean, the teen can refuse to take the meds, and even before they are 18 and legally in charge of their own health care decisions, if they resist taking the meds, it's a different situation than if they are younger and still fully under your authority.

Teens are still under the parent's authority, of course, but the reality is that they don't feel that way, or they don't feel that they should be, and so what the parent decides is more debatable.

You can think about this in two ways (or maybe more, but I'm throwing out two).

First, one could wait until the child is old enough to decide about the meds for themselves. That age is going to vary widely by individual, and what the parent thinks about readiness for decision-making may not match what the child thinks.

Second, one could decide that starting meds while younger gives the child the chance to develop positive med-related habits that will serve them well as they grow older, and with those positive habits, they are more likely to make wise decisions about their meds when they are of legal age. So they can learn how they feel on and off meds and how they help them. They can learn how and when to take them and how to have habits so that they don't forget. They can learn how to talk to the doctor about their meds at their appointments. They can learn how to order and fill prescriptions (not as easy as a regular medication). And parents can assist with all of these things along the way, until s/he is ready to be independent.

We are thinking through these things with DS15, and they tie into how DS feels about his meds. Which is not ALWAYS the same way that we parents feel about the meds.

Edited by Storygirl
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I posted my thoughts above, because if you decide to delay meds, Heart, you will run into the teen years quickly, so it's helpful to be able to look at what the decisions are like when you have a teen, versus when you have a younger person. Just some food for thought (as if you don't have enough to think about LOL).

And if you suspect that your son has absorbed some anti-meds thinking from family members and therefore may be less willing to try them on his own when he is older, giving him the chance to try them when he is younger may open up opportunities for him that otherwise he would be closed off to.

Edited by Storygirl
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This thread somehow did not pop up on my radar. I am not sure about getting the school to pay for testing. I know the school audiologist can do that testing here. The thing is there requirement for diagnosis for CAPD or APD is so stringent that I feel like the school district here was useless. My son went to a private audiologist at the hearing center. He was 2 standard deviations low in 4 out of 5 areas. I took these results back to the school district and other than seating him on the front row they did absolutely nothing . 

I tried a few different private therapies but what helped absolutely the most was Fast Forword. My son got up and did this most mornings before school for around 45 minutes ( sometimes less in the beginning because it was so challenging for him) After he completed Both foundations levels of FF ( It took around 5 months and a lot of bribery and support from myself and his coach) He tested normal in all areas and went up 6 grades in reading levels. He also could listen and remember information fare better than before. 

Summer would be a great time to do that program as there is more time to fit it in. I know a great online coach if anyone pm's me I think she would let you demo it and give you a consult at no cost. She is so busy she wouldn't recommend the program unless it would help. I personally think that it helped immensely with my son flipping letters in writing. For some reason it just firmed up that part of his brain. You could do a search as there are a lot of threads we have talked about FF. In all my therapies it has been the best money I have ever spent for my son. I was very reluctant going in and I hated the companies payment model so I found a private coach for less money and took a chance. 

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I think both ds abd Dh are somewhat in denial about the problems so if we get to the medicine stage it will be very interesting to see/hear feedback from them. Like right now ds May not even realize what he misses in dialogue. Yesterday he said that during the third grade testing his class isn’t rotating rooms. Because they were stuck in one room so long the teachers allowed kids to bring snacks. He didn’t have any but was given some. I asked him if the snack thing was going on today so I could send snacks. He had no idea and said the teacher didn’t say. I don’t know if the teacher didn’t say or he missed that info, KWIM? I said, “why don’t you ask? If you don’t know something, ask.” So today I sent snacks with him just in case. 

I have told him twice that he will participate in the end of year ceremony we got a letter about. There was no rsvp slip so I just told him if your teachers ask, yes, you are going to attend. He said he was asked and said, “I don’t know.” Sigh.

Edited by heartlikealion

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I think partnering with the teacher is essential. I ask my sons teacher for collaboration and I email her if needed. I try to be succinct and purposeful so I don't overload her inbox. My son missed information like that all the time. He misinterprets what he did wrong on assignments and doesn't know how to fix them. It causes him a lot of distress. I have ask the teacher to write down exactly what he needs to fix so he can remember it. I also am grateful because she sends home a newletter on Monday so I know what is going on. 

Since Fast Forword that has gotten a lot better. We also did some post speach therapy about remembering content and writing it down. It really sucks to have dysgraphia and auditory processing together because writing things down really helps cement it into long term memory. My son did not want to do that.  Its a process that is for sure. I wish FF was free and provided to all kiddos going into first grade. In my opinion it catches so many developmental problems early and remediates them. I wish it had a few more modules( maybe a foundationslevel 3 that worked on dichotic listening and even more auditory memory).  I had to supplement that with more hearbuilder AM and Accoustic Pioneer but that was towards the end. My son attends PS but we did 45 minutes every morning of FF. We also continued it through the summer( which would be the very best time to do it) it was grinding to sit with my son everyday and do it. I had to reward to the sky to get him through it but he was a different kiddo coming out the other side.  I have written this other places but I have come to realize that for any learning challenge I think it is getting in the repetitions to remediate and help grow the brain. I firmly believe in neuroplasticity. Its just getting the right remediation and doing it to get those 10 thousand repetitions to firm up the nerve fibers. 

To give you hope. After FF and a bit of maturing my son who is then 11 had this experience. I was giving multiple directions to get the house cleaned up. I usually write things down on a white board but didn't have time to do that as I was in a rush. My son stopped and turned to me and said " Mom what is your priority? I need to know what is the most important thing so I can go and do it" I was so happy because after FF we worked with a speach coach on catching important information. My son recognized that I was flooding him with too much and that he needed to focus on what I was asking and get the most important thing done. That is why I blabber on and on about FF. It was a totally different experience only one year earlier when we started that. 

I have poured a heroic amount of effort into this kiddo, we do therapy once a week and then practace at home 4-5 times a week. I take a notebook to speach therapy and write notes. I sat with him for Fast Forword. We did Saxon phonics in 1st and 2nd grade to get him reading then FF in 3rd grade because his Auditory memory was so weak. I am still working on the dysgraphia stuff but he got Honor roll the last 4 quarters so these therapies definitely help. 

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@exercise_guru that’s awesome! 

I admit I don’t make the time for ds like I should. When he comes home from school he is spent and complains if we ask anything of him. We don’t manage our time well on weekends, either. Yesterday after school I was talking dd on a walk to the dollar store. I tried to get ds to come. He said he was pooped and had PE at the end of the day. He was visibly sweaty. He wants to get on his computer and watch youtubers all day. He’s supposed to read nightly but doesn’t usually unless he’s trying to drag out his bedtime. Yesterday I told him to get off the computer and read a chapter. 

You may have told me about FF or something similar in an old thread. I will look it up. Did you mention it before as an alternative to IM therapy?

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1 hour ago, Storygirl said:

meds while younger gives the child the chance to develop positive med-related habits that will serve them well as they grow older, and with those positive habits, they are more likely to make wise decisions about their meds when they are of legal age.

This is where we are with ds. He doesn't think quite clearly enough about cause/effect to make decisions for himself, so we're teaching him basics like when you don't feel your best, you take something to feel better, you allow the adult to give you something to feel better. It's a big win here. 

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34 minutes ago, heartlikealion said:

I tried to get ds to come. He said he was pooped and had PE at the end of the day. He was visibly sweaty. He wants to get on his computer and watch youtubers all day. He’s supposed to read nightly but doesn’t usually unless he’s trying to drag out his bedtime. Yesterday I told him to get off the computer and read a chapter. 

Poor thing! He may literally be tired and need down time. So then having the meds could reduce that fatigue possibly. 

Yes, structure is good and routine. But if he needs down time because he's worn out, that's really hard to require more.

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33 minutes ago, PeterPan said:

Poor thing! He may literally be tired and need down time. So then having the meds could reduce that fatigue possibly. 

Yes, structure is good and routine. But if he needs down time because he's worn out, that's really hard to require more.

Yeah he’s like this at brick & mortar school. Doesn’t want to do anything after school even if it wasn’t a PE day. That’s part of the reason I think archery is a good compromise. They said work your way up to about 20 arrows. None of this rushing him to practice and games 2-3x a week. 

He does best with transitions if he knows in advance so I always try to keep him in the loop. Remind him what’s going on after school. We’re supposed to go to a Holy day service tonight but maybe not now. All the central MS schools are changing things up because of severe weather coming. I just got a call that school will be let out today at 1:00. No idea if they will have the Friday makeup day now or how this will affect testing days. 

@exercise_guru this thread is a mile long so just in case you didn’t see it, I do have plans to take him to an audiologist. Our appt is scheduled for Tuesday with someone qualified in APD should it come to that.  

Edited by heartlikealion
Autocorrect
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Found his glasses. 

Since I never heard back from that job I’m going to register him Monday for the once/week English class. If anything changes I should still be able to get my registration fee back and worst case I lose $25. 

Met some other moms at a birthday party. They are in different school districts and were sharing their experiences with learning issues, IEP etc. One of them has a kid on meds and the hostess of the party showed some OTC stuff for focus her kid takes. She got it at GNC. Is anyone familiar with this type of thing? https://www.gnc.com/for-children/585948.html?mrkgcl=1098&mrkgadid=3200889317&product_id=585948&flagtype=brand&vendor=none&channel=ppc&adpos=1o1&creative=189757865680&device=m&matchtype=&network=g&gclid=EAIaIQobChMIqcOVioPg4QIVDLXACh3U6wX1EAQYASABEgKlhfD_BwE&gclsrc=aw.ds

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I compared the ingredient list to the Focus Factor my son tried.  They are very similar.  Focus factor did nothing for my son, fwiw. We tried it for a few months in conjunction with a very high quality fish oil (Nordic Naturals) and we didn't see any significant improvement.

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We've had a discussion of phosphatidylserine in the past. I was going to say won't help but then googlefu pops up some studies. I *think* maybe I read they were trying to make a medication version. Again, I think the trouble is significance.

Ok, the product I'm remembering is Vayarin. Not sure what the current availability is or what the studies are showing.

Edited by PeterPan
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One of the moms said if I didn’t want a drug like Ritalin (she said this was the same as Adderall*) that my insurance would basically make me try those before agreeing to let me switch. She has BCBS but not necessarily the same plan. She named one but I am not not very familiar with the meds. She said lucky for them the first? med they tried worked but the dosing was the thing they had to work out. She said some are time released. What worked best for them was two small doses with one administered after lunch by the school nurse when the first has worn off. I had no idea they might need to take a dose at school. 

*they aren’t the same but maybe in a similar category? Maybe that’s what she meant. 

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Ritalin and Adderall are actually different. RItalin and Focalin, which are similar, work for DS15, but Adderall was a disaster.

We have BCBS, and they gave no input or restrictions about what meds we tried. We did pay for the medication that we tried (minus whatever insurance covered), and we were not expecting to negotiate for BCBS to do anything special for us. We just paid the required price for each med. We never heard from the insurance about it at all; it was just like being prescribed any other kind of medicine.

The only difference is that there are restrictions about how often the meds can be refilled and how you get the prescription from the doctor, and so on, because they are controlled substances.

We tried five types, I believe, during the first four or five months. Some of them were obviously wrong (no effect, made things worse, or had side effects), so we only used them for a few days. Others we tried for longer before deciding whether things were working well or not.

There is no way to predict this until you try. Sometimes people are prescribed the best drug with the first one, but it is a process that requires a trial period and adjustments.

The meds are different prices, as well. Some have generic versions and some do not.

DS uses both an extended release formula and the short-acting kind that you take twice a day. For him, the extended release is much more expensive, but there are reasons that we use it.

It's really helpful to talk over these things with friends in real life and on the boards, so that you can get a sense of how things work. But keep in mind that the process for figuring out the meds is highly individualized, so what one person says worked for them may not be at all what your son needs.

Our doctor worked with us very closely for awhile while we figured it out.

Insurance will not cover the total cost of the meds, and the part the patient pays can be expensive. However, you can shop around to pharmacies to get the best price. We found that our grocery store pharmacy, for example, charges half of what Target does for DS's prescription.

It will take time for you to sort it out, once you decide to move forward. And there will be doctor's visits and medication costs; insurance will not cover all of it for you (I know you didn't say that you expected that; I am just giving a heads up).

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There are two different types of ADHD meds. Some are stimulants. Some are non-stimulants. Some people need stimulants, and some people do well on the non-stimulant kind.This may be what your friend meant about Ritalin and Adderall being the same. They are both stimulants. But they have different active ingredients.

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Yes that’s what she must have meant because prior to calling them the same she said her ins. made them try stimulants first I think? She had thrown out another name and said they couldn’t try it because it was in the wrong category. 

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And yes, I agree that what works for one may be a disaster for another person. I have very limited experience with prescription drugs but I’ve learned that even for myself. I couldn’t take an antibiotic because it made me itch. Lexapro make me way sleepier that Celexa. And I do get generic versions and have switched pharmacies like 3x. We currently use a local pharmacy which we had some bad experiences with but they are fine with my refills, just not a great fit with sudden, “I need this filled today” scenarios. Their inventory is not great and when Dh was in agony waiting for me to come home they lost his ID. I had a friend pick it up. When I looked at our receipt I said I think they undercharged for the Biofreeze. That stuff is normally more expensive (in their case it was stored behind the counter). So it’s a toss up with these places lol There’s an article about Fred’s closing many locations but ours is not one. 

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If you're concerned that he could have reactions to certain types of meds, you can find a doctor doing the Genesight testing and have them run that for the ADHD meds. If he has had no issues with aggression and there's no family history or bipolar or schizophrenia, I would *guess* it's going to be fine to do stimulant meds. 

I felt very nervous about trying meds too. And like Story says, I thought I knew what should happen and I got in there and the ped had some opinions based on what he knew about my dd and what was appropriate for the age. So yes they have some options (time-release vs. short-acting, etc.) but the ped will help sort it out. Also the ped can possibly look up what your insurance will cover or offer coupons. We have a high deductible on our insurance, so we got coupons. You can also compare prices with GoodRx to try to get the price down. Some of the meds are very cheap and some not so much. 

The patent is going off Vyvanse pretty soon, and at that point there should be generics. It's the most techy (specialized dosing mechanism), so it's pretty $$. 

On the lexapro and celexa, there's Genesight testing for that too. So then you'd have actual explanations, like what genes are causing it. 

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3 minutes ago, PeterPan said:

If you're concerned that he could have reactions to certain types of meds, you can find a doctor doing the Genesight testing and have them run that for the ADHD meds. If he has had no issues with aggression and there's no family history or bipolar or schizophrenia, I would *guess* it's going to be fine to do stimulant meds. 

I felt very nervous about trying meds too. And like Story says, I thought I knew what should happen and I got in there and the ped had some opinions based on what he knew about my dd and what was appropriate for the age. So yes they have some options (time-release vs. short-acting, etc.) but the ped will help sort it out. Also the ped can possibly look up what your insurance will cover or offer coupons. We have a high deductible on our insurance, so we got coupons. You can also compare prices with GoodRx to try to get the price down. Some of the meds are very cheap and some not so much. 

The patent is going off Vyvanse pretty soon, and at that point there should be generics. It's the most techy (specialized dosing mechanism), so it's pretty $$. 

On the lexapro and celexa, there's Genesight testing for that too. So then you'd have actual explanations, like what genes are causing it. 

I meant to tell you in another post regarding testing genes that his current ped doesn’t believe in stuff like that, or at least scoffed when I mentioned MTHFR gene being a reason for some to avoid Tylenol. Not that I’d need his blessing to investigate genes. It only came up because of the time ds overdosed and he said he doesn’t believe in meds that add fever reducers. He said always take separately.

I started reading my book again on slow processing. I have more context now that I’m understanding things better now (it’s the Bright kids Who Can’t Keep Up book). 

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I don't know about MTHFR and tylenol, hmm. I'll look into it, didn't realize there was a connection.

You seem to have a hard time getting intelligent care where you are. I think the thing with genetics and using it for psychiatric care, medication choices, etc. is newer. It's a big deal though and it's not like this is out there or extreme or something. It's just maybe not something a gp does. It's more like go to a geneticist if you think there's a global problem or the specialist you're seeing for a specific problem might want to know about targeted things. Lots of care now is pigeon-holed. 

But yeah, kinda makes you wonder why mental health care is so superficial when we can actually run genetics now and be targeted and safer.

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Ok, I'm looking into this tylenol and MTHFR thing. https://www.checkupnewsroom.com/a-pediatricians-goes-in-depth-into-mthfr/  This is where your ped is coming from, and I kind of agree. The MTHFR thing is generalizing a lot from single SNPs (pairs of alleles) and people are drawing pretty sweeping conclusions. So I can see why your doc was like that's a little vague to say that's why someone is or is not ok with their tylenol dose. You really might be onto something there, but it's not really a tight correlation.

With some of these SNPs they're testing, they have really tight data. If you look at the Genesight sample reports, you'll see specific alleles (SNPs) and specific meds. This is data that is published data, and Genesight is just pulling it into one place and making it easy. Really tight data, like a population had this variant and they responded poorly to this medication. Really tight. 

Here's the link again. https://webapps.myriad.com/find-provider-assurex/?bypassmodal=true  I'm not sure where you are, but I'm turning up quite a few hits in Missisippi, enough that you might be able to get someone. There are nurse practitioners, pdocs, all kinds of options. 

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Yeah I found someone on that site that I could easily get to. Thanks. 

We’re all off today and tomorrow I’ll take ds to the audiologist. I couldn’t find anywhere on the site to fill out paperwork in advance. I try to do that before dr appts when I can. 

My dad sent me stuff that got buried in spam about Dr Mercola I think and ADHD info. It was probably something supporting the chi machine because my dad said we can try that when ds visits. It supports oxygen to the brain somehow? You just lie your feet on it and it runs and looks fairly relaxing. 

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Yeah just reread part of the email and it had attachments about ADD benefits as well as allergies and asthma (all apply to ds). It can’t hurt to try. I think dh was leery but I literally see no problem trying. I’ve tried the machine at some point. 

https://www.thechimachine.com/special-needs-children-helped.html

there are videos but these are the types of claims I’ve been seeing. 

Edited by heartlikealion

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Too bad, Mercola has moved on to his next ideas and now has kids vaping essential oils for ADHD. https://articles.mercola.com/sites/articles/archive/2017/03/02/people-with-adhd-have-altered-brains.aspx  When will it end?? I mean REALLY?? He's not saying vape them, but it's the same stupidity. God never meant for oils to get sniffed into your lungs like that. So not natural, so no evidence that it's safe, but I meet these moms who constantly have their kids sniffing vials and logging their livers. 

That chi machine looks like it's replicating something I had a massage therapist do to me once. That's nice. Not gonna change the kid's DOPAMINE levels and actually improve his ATTENTION deficit that was due to dopamine, but sure if you want to do that you don't even need the machine, mercy. I do sensory all the time on my kid. Sensory is nice. 

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If you want to do meds, you're going to have to get brave and just do them. You're not going to get the support of your dh or your father or your neighbor or anyone else. It will fall to YOU. You're the Little Red Hen on this.

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Lol no it doesn’t claim to affect dopamine but I did read something about it affecting serotonin... which I admit sounds skeptical. 

Yeah I’m just looking at all my options and I’m aware I may never be on the same page as everyone in my life. Dh didn’t say anything about being adamantly against meds last time we spoke about it. I think we’re both just feeling this out still. 

If ds passes the hearing test tomorrow what would make the dr look into APD? Nothing? Or something else? I don’t understand how the test is related when you can have good hearing and have APD. 

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