Math and tough love (for me)

[Southern Ivy]

Ok...so here's the deal 
This year has pretty much been a crap shoot with school due to family emergencies. It's not a huge deal because she just turn 6 a couple days ago. School is not even compulsory in our state until 7. But, she definitely isn't ready for 1st grade material. 

Anyway...MATH...
Part of me says to continue with Horizon math through the summer and try to at least catch her up for 1st grade math.  The other part of me says just start K over in the fall and get it done.  (I'll be honest. Part of my wanting to do the K math in the fall is due to a curriculum that just came out that I really like and that I think she will do well with  -- and the 1st grade curriculum doesn't come out until next May so that would get us on track for the math.) 
I know I am totally ? over here for the pretty, new curriculum (from The Good and The Beautiful) and I know that's contributing to my inability to decide what to do. lol 

It also doesn't help that DH is worried about her falling further behind. He wants me to "catch her up". He doesn't seem to realize that she only knows 10 letters now and is quite "behind" her K friends. She's making great gains and doing really well in speech/OT, but he's still really focused on the academic aspect. He doesn't seem to understand that pushing her isn't going to help. (It also doesn't help that she has a cousin a few months older than her. I think there's an idea that they'll stay on the same level.) 


So, tough love time - do I suck it up and just finish or continue to just focus on the alphabet and start the K math curriculum in the fall? 

[Heathermomster]

Place her where she needs to be.   

[Southern Ivy]

27 minutes ago, Heathermomster said:

Place her where she needs to be.   

Right - but do I just say "Screw it" for the summer and start over in the fall?
Or should I continue to do school during the summer so she can begin a 1st grade curriculum in mid-fall...maybe..?

That's what I'm having a hard time deciding. 

[PeterPan]

What you don't know yet is whether she has an SLD in reading or whether the letter acquisition was behind because of the APD. You don't yet know whether her math will also be a disability or whether the reading will be the only disability. Further, you don't yet know, for lack of complete psych evals (which you may very well be doing some time between now and age 7, hint hint) whether she has overall delays or more targeted delays.

My nice opinion? Work on math through the summer. Don't use Horizons because it's not necessary and you don't want to. Get Ronit Bird or a pile of games or the Family Math book or ANYTHING you want, but yes you should do math this summer. It is absurd to let a child remain behind when the subject is conducive to play and the child is READY to play. There is no reason not to play. Therefore, you play math. 

As for GBB, well, you want my not so nice opinion? I have no clue who she is, but she's a nut. Someone posted about her free booklists on another board here and I downloaded them. I was so unimpressed that I wouldn't touch anything she wrote for math with a 10 foot pole.

So there you go. I could be all wet and her math is AWESOME. Fine, whatever. I'm just saying you should do math and you should not wait. Find something fun, something that fits her learning style, and GO DO MATH. 

Math needs time to mature, to develop, and it's not curriculum dependent. You need to be DOING math, using it, building concepts. That's absurd to wait. Your dh is right. She doesn't need to be doing 1st grade math on some timetable, but she needs to be doing math.

[Heathermomster]

6 hours ago, Southern Ivy said:

Right - but do I just say "Screw it" for the summer and start over in the fall?
Or should I continue to do school during the summer so she can begin a 1st grade curriculum in mid-fall...maybe..?

That's what I'm having a hard time deciding. 

That’s up to you.  Personally, I break during the summer because that is how I roll.

If you suspect a maths SLD, take off a few weeks off and then use Ronit Bird e-books and play kitchen table type math.  Make it fun.  

When my son was second grade through fifth grade, I hired a Wilson Reading tutor at 1hr/day for 5 days a week, the entire month of June.  He took off July to mid Aug for summer.  

Or, skip and wait until next school year and start the new math.  No one has a right to judge your decision, so do what you like.  Your school year was intense.

[ktgrok]

There are 1st grade math programs that are meant to be for beginners. CLE math starts with first grade, they don't have to have any previous experience. And the first few weeks are learning their numbers. It's also a great curriculum for kids who get nervous with math. That said, her stamina may not be up to doing a full lesson, so I'd set a timer or do half a lesson a day if you need to. Or half in the morning half after lunch. But it would have a "first grade" on it to make your DH happy. Math Mammoth 1st grade also starts from the beginning, but personally we found it lacked enough review for a struggling student. CLE works. 

So you could play at math over the summer (Dragon Box Numbers and other phone/tablet apps or whatever) and keep it fun, and then do "first grade" math in the fall, but not be over her level. 

And phonics programs often don't have grade levels anyway. Memoria Press has an alphabet book you could do in the meantime to have a head start. 

[Southern Ivy]

6 hours ago, Ktgrok said:

There are 1st grade math programs that are meant to be for beginners. CLE math starts with first grade, they don't have to have any previous experience. And the first few weeks are learning their numbers. It's also a great curriculum for kids who get nervous with math. That said, her stamina may not be up to doing a full lesson, so I'd set a timer or do half a lesson a day if you need to. Or half in the morning half after lunch. But it would have a "first grade" on it to make your DH happy. Math Mammoth 1st grade also starts from the beginning, but personally we found it lacked enough review for a struggling student. CLE works. 

So you could play at math over the summer (Dragon Box Numbers and other phone/tablet apps or whatever) and keep it fun, and then do "first grade" math in the fall, but not be over her level. 

And phonics programs often don't have grade levels anyway. Memoria Press has an alphabet book you could do in the meantime to have a head start. 

She actually does well with math. We could do 2-3 math lessons in Horizon depending on her mood. She taught herself to add by watching Peg+Cat and playing PBS Kids games on the tablet when we're driving to speech and OT. ?‍♀️  I mean, she's no Einstein, but she's figuring it out on her own. lol
Our main issue has been due to family emergencies and traveling to be with family this winter/early spring, we have barely completed anything. ? 

There are some other math apps that I might look into as well. Definitely will look into the Dragon Box one. Thanks! 

[PeterPan]

The Dragonbox apps are fun! 

It sounds like if you just let her continue, she'll tell you herself when it gets hard or is no longer fun. Do you have fun plans for summer? Our Y does swim lessons at the outdoor pool in the summer. The indoor pool is very noisy, and you wouldn't be able to wear her filter. So you might have a routine like that and find that the math just slides in as part of a morning routine (math, a little reading, etc.) before swimming. At least that's how it rolled for us at that age. (the swimming, not work before swimming, the swimming was at 9 am, lol.)

[ktgrok]

2 hours ago, Southern Ivy said:

She actually does well with math. We could do 2-3 math lessons in Horizon depending on her mood. She taught herself to add by watching Peg+Cat and playing PBS Kids games on the tablet when we're driving to speech and OT. ?‍♀️  I mean, she's no Einstein, but she's figuring it out on her own. lol
Our main issue has been due to family emergencies and traveling to be with family this winter/early spring, we have barely completed anything. ? 

There are some other math apps that I might look into as well. Definitely will look into the Dragon Box one. Thanks! 

Then why don't you think she will be ready for first grade math? There isn't a lot of prerequisites for it in my experience. Being able to identify and count numbers 1-10, maybe some adding. I'd just jump into a 1st grade book given what you are saying. 

[Lecka]

It sounds like her math has nothing to do with her reading.  Don’t think she is destined to be behind in math for some reason.  It sounds like she is doing really well.  

You don’t have to do every page in Horizons if she is doing 2-3 lessons a day and seems to pick it up easily or already understand it from other exposure.

I don’t think you should wait around for this other curriculum.  She will be way past it by the time it comes out, it sounds like.  If she isn’t then you can get to use it ?.  But it sounds like she is going to be past it.  

As someone whose kids are older..... if she has picked up adding from a tv show, then you aren’t going to do that well with starting her with adding several months from now.  It just isn’t going to work.  

You have a lot of options but I think you will need to place her where she is in any option, and not artificially go through a program to cover things she already knows.  

You probably are providing her with more of an enriched math environment than you realize, she is probably learning and picking up from more than just your time spent on Horizons.  If not (both on the exposure side and the picking-it-up side) then you wouldn’t be able to do 2-3 lessons a day in Horizons.  That you can do that shows it’s either review for her or at a level where she can pick it up very quickly and easily.  You can’t make plans to tie her to a curriculum when she is learning and picking things up out of the bounds of the curriculum.  It just doesn’t work.  If she were in a nice public school she would be given differentiated assignments of some kind as soon as the teacher saw she was picking things up or basically already knew them.  

So it’s not the same situation as with reading and you need to adjust your mindset for other areas.  

[Southern Ivy]

2 hours ago, PeterPan said:

The Dragonbox apps are fun! 

It sounds like if you just let her continue, she'll tell you herself when it gets hard or is no longer fun. Do you have fun plans for summer? Our Y does swim lessons at the outdoor pool in the summer. The indoor pool is very noisy, and you wouldn't be able to wear her filter. So you might have a routine like that and find that the math just slides in as part of a morning routine (math, a little reading, etc.) before swimming. At least that's how it rolled for us at that age. (the swimming, not work before swimming, the swimming was at 9 am, lol.)

Not much this year  - just continuing with her current swim lessons on Thursdays, speech/OT, and we're working on some alternative treatments to try to get her off her ADHD meds. So, that's taking up a chunk of our time. (She's having yucky side effects and we're seeking some treatments and supplements that should help. She's still on the meds until we can start weaning her off.) 

I'll just continue to work with her at home on the days we have nothing planned. 

[Southern Ivy]

You all are right - as always. ? 
Like I said, I needed some tough love. I definitely don't want to hold her back in an area if she's able to move forward. 

[PeterPan]

Well I don't think it's so much being tough on yourself as maybe encouraging you not to be wistful, kwim? You can't get it back. You can't make a year be something it wasn't. You have to accept it exactly as it was, know you did the best you could, and make your best decisions now. 

She has disabilities and her own mix. You're not going to be able to go backward and have perfect years or even perfect years going forward. Your safest thing is to embrace her where she is right now, do what she is ready for right now, and have tons of fun together right now. 

I just know I did that a lot, sort of going oh in the fall we'll have fun, later we'll do such and such. Sometimes they outgrow your great ideas. You can't change the past and you can't change that disabilities made it look different than you would have envisioned. It's a different trip, kwim? 

What side effects on the meds, btw? Weren't meds like a RADICAL CHANGE for her? That's pretty rough. And she had her APD testing on meds, yes? So if the meds are changing her processing speed (which they do), then they could in theory affect the adjustment on her filter, yes? 

I don't know, just thinking out loud there. It's hard stuff. I mean, who am I to talk. I kept my dd off meds till high school and I have a ds so wild people are astonished I don't put him on meds. I get it's complicated, lol. But as far as alternative stuff solving ADHD, fat chance. Like you might get some kind of improvement because those things were actually a problem, but it's not gonna be the same. But if the side effects are significant, I can see why you're wanting off. Did you ever get behavioral help? Like she's had Zones of Reg?

[Southern Ivy]

24 minutes ago, PeterPan said:

What side effects on the meds, btw? Weren't meds like a RADICAL CHANGE for her? That's pretty rough. And she had her APD testing on meds, yes? So if the meds are changing her processing speed (which they do), then they could in theory affect the adjustment on her filter, yes? 

I don't know, just thinking out loud there. It's hard stuff. I mean, who am I to talk. I kept my dd off meds till high school and I have a ds so wild people are astonished I don't put him on meds. I get it's complicated, lol. But as far as alternative stuff solving ADHD, fat chance. Like you might get some kind of improvement because those things were actually a problem, but it's not gonna be the same. But if the side effects are significant, I can see why you're wanting off. Did you ever get behavioral help? Like she's had Zones of Reg?

For starters - heightened anxiety, increased heart rate, stomach pains when eating...if she eats, etc. She's down to 47lbs and barely eats unless we skip doses. (We lowered the dose due to continued weightloss, so she's starting to eat a bit more.) 

She HATES how they make her feel. She has asked me "Mom, why to parents give their kids medicine to make them not feel the same? Does everyone have to 'not feel the same' or is it just because I am bad?" ☹️ 
She has asked multiple times to not have to take the medicine because "It makes me feel like I am not me and I'm just a boring person." And, while a 6 year old is not mature enough to make all the decisions, she voices her desire to "not feel like I'm not me" so frequently that I would be irresponsible to completely ignore her desires. 

Yes, some of it is probably the medicine type, but she can't swallow pills, so that greatly limits what we can take right now. 

[Lecka]

Her health and well-being have to come first!

But I was going to say — google “pill swallowing  program.”  I don’t know specifics but there are strategies to teach kids to swallow pills; starting with very small things, that kind of thing.  

[Southern Ivy]

3 minutes ago, Lecka said:

Her health and well-being have to come first!

But I was going to say — google “pill swallowing  program.”  I don’t know specifics but there are strategies to teach kids to swallow pills; starting with very small things, that kind of thing.  

We started with mini-M&Ms and no go. lol That was about 4 months ago, though. So, we'll try again soon. We have a special cup that is supposed to help you swallow pills, but it doesn't help her. lol She gags every time. ?‍♀️

[PeterPan]

1 hour ago, Southern Ivy said:

For starters - heightened anxiety, increased heart rate, stomach pains when eating...if she eats, etc. She's down to 47lbs and barely eats unless we skip doses. (We lowered the dose due to continued weightloss, so she's starting to eat a bit more.) 

She HATES how they make her feel. She has asked me "Mom, why to parents give their kids medicine to make them not feel the same? Does everyone have to 'not feel the same' or is it just because I am bad?" ☹️ 
She has asked multiple times to not have to take the medicine because "It makes me feel like I am not me and I'm just a boring person." And, while a 6 year old is not mature enough to make all the decisions, she voices her desire to "not feel like I'm not me" so frequently that I would be irresponsible to completely ignore her desires. 

Yes, some of it is probably the medicine type, but she can't swallow pills, so that greatly limits what we can take right now. 

The weight loss is huge. Remind us/me, she's at school or at home or both right now? And the plan for fall is exclusively at home? The gig with ADHD and meds at this age, to me, is safety. If she can be SAFE, then everything else can be worked around. The stats, for a population (if you believe stats), don't bear out that meds change academic outcomes. So to say she needs meds to learn, for a population, is not the case. Now barreling down to the individual, yes that can be the case, definitely. But if you're saying I think she's learning, am I holding back her learning by taking her off the meds, the stats would lead you to think that she can be fine. Many kids are fine. They'll need supports and accommodations, but they can be fine.

Is she as low as they can take the dose? Yes, the not eating is a known side effect. Big issue. BIG issue for some kids. 

What's interesting about her comments about how they make her feel is that she showed some self-awareness. That's really cool, kwim? Like given the choice between oblivious and self-aware, you'd much rather have self-aware. The "bad" thing would be school, yes? Some of that though can be tempered by her immaturity. She's 5, so she might like being scattered, immature, all over the place, pixie and squirrel and fairy all in one day. That's NORMAL for her age. When she's 14, she might be glad for some support to move on from that. And I'm with her, that it's not necessary to compel 5 yos to have the behavior of much older children and that there's a lot that can be worked with without meds. 

What you might want to do is talk with her very honestly. Say her brain does this (put it into words) and that meds are a tool, a choice. We need to be able to do xzy (some math, some reading, some read alouds, whatever) and that we have lots of ways to help her body get there. We can try other tools and we can be flexible, but we need buy-in and we need her to work at using the tools. 

See, you're not going to be able to just give her omega 3 or pull her off milk or whatever and have her suddenly just, poof, have no more squirrel/pixie/fairy to her. Not reality. But yeah, you can calm her body down enough with sensory work, with diet, with significant heavy work before school, etc., that she can use her tools (asking for breaks, self-monitoring, fidgets on seats, flex arrangements, etc.) to make it work. And if she wants to work at it, you're cool with that. The meds were just a tool. 

You want to keep that door open so she seems meds as something she could choose later, kwim? You don't want it to be just not now, not ever. If she's this bright, later they might be a really good choice. They maybe aren't the right choice now but might be later.

For the pill swallowing, we started with Nerds, the teeny tiny candies. My ds has apraxia, so he struggled to motor plan the swallowing. It took a number of months, but he can now take even large capsules. That was at age 9, not 5. But anyways, Nerds worked for us.

Have you read her the All Dogs have ADHD book? It might make her laugh, lol. I think you're right and wise to roll with her self-awareness and let her understand the issues and make choices and collaborate for solutions. Kids this age WANT to comply and be good and please you, so you want to set it up so it's possible for them to please you. You're saying she doesn't have to take meds to please you, but what WILL it take? Probably you're not going to be able to do it FOR her. Nothing alternative is going to be as strong and absolute as the meds. So if you're moving on from that choice and tool, then you're left with tools she does for herself, tools she does with support. Since she's self-aware, she can contribute to that.

When you say skipping doses, is she taking it multiple times a day or once a day? If she could eat breakfast, do an incredibly low dose of the med, do her work right away, let it wear off (I'm assuming a 4 hour half life, something like that) and then eat lunch, she'd miss no meals, get her work done, and maybe have reduced symptoms. You two could collaborate and talk through options like that. Rather than seeing it as on the meds all day (which is what school needs), you could go for a short-acting approach. Does she feel they help her with her school work? It's not incompatible for her to say she's uncertain she likes feeling different but also acknowledge that they make some academics go better. Like that math, you're saying she's blowing through 2-3 lessons of Horizons a day. That's on the meds or off? Because that sounds like some serious focusing to me. I haven't seen the Horizons K5, but I'm just saying that sounds like the meds are helping her get out what is inside. So you drop the meds, and her ability to do that is going to drop dramatically. And that's where you could just discuss it. Like you say, she's a kid. You can collaborate and figure out what they're helping, what that list of stuff was like before meds, what it is like now, what would happen with those things if you went off. Some things won't matter. Like reading, if her reading is going well, she'll just run a bit, take breaks, no biggee. But math, if her ability to do that work was because of the meds, that might be a lot harder. It's things she can think through with you, rather than being just all or nothing. Like if you did 1/3 of the dose and only did it in the morning only on days before school work, what would happen?

I'm not saying you have to. I didn't put my dd on meds till high school, so clearly I thought there were paths without. But that's just how I would be thinking through it and the questions I would be asking. And then, if you decide to pull her off completely, you know you thought it through. I will tell you though that that was a lot of water under the bridge, teaching my dd all those years without meds. I really don't know if I'd do it again that way. I'd probably be a little more open to some kind of really select, really trim, really low dose, really targeted intervention. Not all day, not 12 hours. Just enough to bring school within reach. I think, with my hindsight, it would have been nice to know if that would have worked. I don't know. Maybe it would still have had unacceptable side effects. I'm with you that the weight loss is unacceptable, totally unacceptable.

Keep working on it. You'll figure it out. It's good that you're talking with her and collaborating and listening. Help her think harder and analyze harder and understand. There's a lot of room for her to buy-in there and learn to use strategies. 

[PeterPan]

1 hour ago, Southern Ivy said:

We started with mini-M&Ms and no go. lol That was about 4 months ago, though. So, we'll try again soon. We have a special cup that is supposed to help you swallow pills, but it doesn't help her. lol She gags every time. ?‍♀️

Yeah, still too big. We had to practice swallowing WITHOUT anything in his mouth. He didn't know how that should feel. Then we got a box of Nerds (25 cents at the party store) because they were so tiny that they were non-threatening. Even mini-m&ms are still pretty big. You might have to talk through the steps like how to tip her head, what sequence to do it in, etc. Yes, there was a site. We had a thread on it a while ago. But mainly it was feeling her body without anything in her mouth, figuring out the steps, then trying it with a nerd. And just doing 1 or 2 was actually really hard! We didn't rush. Now he's pretty chilled at it.

Btw, you mentioned the anxiety. Genetics might turn up something on that. People will say oh the meds caused the anxiety, but it can be more that they unmasked it. She's trying to do more, so she'll have more anxiety. And then if she has a physical explanation, like a defective TPH2 gene, its pretty treatable. 

[Southern Ivy]

1 hour ago, PeterPan said:

The weight loss is huge. Remind us/me, she's at school or at home or both right now? 

She is home right now and will be home until we are forced to put her in school or until we decide that would be better for her. I honestly don't see it being better for her, but life throws you curve balls. ?

Is she as low as they can take the dose? 

She's not as low as she can go, but the lowest she can go made her an emotional mess. MAJOR outbursts over the slightest disappointment and higher anxiety than she has now. 

What's interesting about her comments about how they make her feel is that she showed some self-awareness. What you might want to do is talk with her very honestly. Say her brain does this (put it into words) and that meds are a tool, a choice.
Yes, she's amazingly self-aware in this regard. I was impressed that she was able to key in on the difference. We have definitely talked to her. We just tell her that it helps to her slow down and helps her brain to work a bit better for her. 

When you say skipping doses, is she taking it multiple times a day or once a day? 

She takes it 2x a day. So, I'll make her eat before she takes it. Then, if she will either inhale food at 8pm or if we happen to forget and skip it, she'll eat a pretty decent lunch or dinner. As much as I want her off due to the side effects, we're still doing them until we are able to wean her off. 

We are currently having her treated by a chiropractor who practices NAET. It seems a little far out there, but we saw significant improvement with my nephews SPD and my dad (who had a subdural hematoma and 2 small strokes due to a head injury in February) is being treated by a NAET provider and is 3 mos ahead of where he should be for the type of TBI he sustained. So, I'm hopeful that it can help in some regard. 
I don't expect it  to be a cure-all, but I do expect it to help lesson some of the effects of her ADHD. That with Omega-3s, diet change, and possibly some other supplements should at least help us to function a bit more. ? *fingers crossed* 

 

1 hour ago, PeterPan said:

Btw, you mentioned the anxiety. Genetics might turn up something on that. People will say oh the meds caused the anxiety, but it can be more that they unmasked it. She's trying to do more, so she'll have more anxiety. And then if she has a physical explanation, like a defective TPH2 gene, its pretty treatable. 

She's always had some kind of anxiety. The meds just seem to heighten it. ?

[PeterPan]

So there you go. You want to run genetics and see if you can find out the actual cause of the anxiety. I keep handing out the gene and rs. It's TPH2 and site search to find the RS. I just posted it on chat. 23andme runs it. The genetics would help, rather than guessing, because then you'd know if anything else is going on before you take stuff. In our family, that TPH2 gene, which helps the body convert tryptophan to 5HTP, was defective. 5HTP comes in a time release version, though obviously that doesn't help her yet. For ds, who can swallow, it's amazing. He's super calm all day.

For now, I guess I wonder why she needs to be on the 2nd dose? That would be an obvious place to cut back. Unless there's a safety issue, the only reason for the meds was for school right? Or was it safety? If it's for school, you just tighten up when you do it and only do the meds then, dosing early enough for them to be kicked in.

Yeah, I'm a little up on NAET. I used to have some pretty wicked health problems, so just about anything you can think up, I've probably looked into, lol. Why would he be doing NAET for ADHD??? I was looking into it for MCS (multiple chemical sensitivities). 

Yes, if she's not eating BEFORE she takes her meds, then that would be a place to start. That should help immensely. Even if she needs an hour two before she's ready to eat, what's the rush? If the reason to be on them is for school, not for safety, then you have more flexibility. She could rise, read and do whatever, eat a good hearty breakfast, THEN take her meds and do her school work. Then they wear off, she eats a late lunch, and she goes about her pixie play, sans meds.

If you just want to see, you could try the 5HTP. Dunno if you can get a spray. 5HTP uses up some methyls, so if she's an undermethylator, she might get a little more sluggish. If she already has gobs of serotonin (unlikely), she would make more. But just as a thing to try on your own for the anxiety, yeah the 5HTP might be astonishingly helpful. You'd know pretty quickly. I put myself and my ds on it, and it's so profound the difference it makes, well let's just say it's profound. 

Looks like amazon does have a spray for the 5HTP. It would be something to try. I would have thought it was voodoo, but I've actually seen the genetics on my people. Bummer for you is that genetics will take you 4 weeks. That's where, if you wanted, you could just try it and see. Worst that happens is her situation is more complex and it needs to wait for the genetics. 

And no, we did all the healthy stuff. We gave dd omega 3, used a nutritionist, ate organic, blah blah. In fact, when you run genetics might turn out she needs MORE of the omega3 than usual. There are some genes that flag for that. My ds gets a bump in his speech with omega 3, but he doesn't tolerate fish oil (which I haven't really figured out, I keep looking for an explanation) and he needs higher than normal for the flax oil. But yeah, still presents as ADHD to every psych who sees him, haha. It's all good stuff to do, and that's how we kept dd in the tolerable range for so long. But really, your dd is a lot farther along. Did you have her checked for retained reflexes? Or did you check them yourself? THAT would be a super likely thing to help improve her behavior. Like you find some that are not integrated and work on them, and you may see major improvements. Not poof gone, but working toward that tolerable range.

[PeterPan]

Have you talked with your ped about the meds? Oh, this was the ped who didn't like meds in the first place. Well anyways, the stuff we're talking about, the strategies to make sure she's eating, etc. is stuff your ped should have been harping on. It's really concerning (to me) that your ped ISN'T saying those things. They're really serious issues. Our ped has VERY SERIOUS talks with dd about not losing weight and they check it and watch it. I don't want to go into more there, but your doc should have been telling you things to do. 

[Southern Ivy]

28 minutes ago, PeterPan said:

Have you talked with your ped about the meds? Oh, this was the ped who didn't like meds in the first place. Well anyways, the stuff we're talking about, the strategies to make sure she's eating, etc. is stuff your ped should have been harping on. It's really concerning (to me) that your ped ISN'T saying those things. They're really serious issues. Our ped has VERY SERIOUS talks with dd about not losing weight and they check it and watch it. I don't want to go into more there, but your doc should have been telling you things to do. 

Oh, the ped IS definitely harping on the food. We had to have an actual appointment yesterday due to the weightloss. Still, she's so active that even if she eats a huge breakfast and a huge dinner, she's still barely gaining. 
And yes, this is the dr wasn't too keen on the meds anyway. So, she's definitely pro us getting off the meds. 

As for NAET for ADHD - It goes back to the brain/body function, the allergens and chemical sensitivies, etc. We've only been to 2 treatments so far, so understandably, we haven't seen any results yet. 
(I'm currently reading a book called Healing without Hurting and she also suggests NAET, which was nice to read since I had already decided to go that route.) 

[Southern Ivy]

And yes - her OT is working on retained reflexes (ATNR and maybe spinal galant? That one is "new" - as in, the new OT noticed it, but he had to really look for it because it's not that bad)

[ktgrok]

Not sure how many of the medications you have tried, but there are quite a few, most really, that will work for kids that can't swallow pills. https://childmind.org/article/understanding-adhd-medications/

[Southern Ivy]

1 hour ago, Ktgrok said:

Not sure how many of the medications you have tried, but there are quite a few, most really, that will work for kids that can't swallow pills. https://childmind.org/article/understanding-adhd-medications/

I think, if I remember correctly, some of it has to do with her age and size? ?‍♀️

[geodob]

If you consider taking 5HTP, then it should be done under medical supervision.  Though it should only be used short term.  As long term use, will inhibit the production of other neurotransmitters: dopamine, norepinephrine, and epinephrine.   

[PeterPan]

Where's your evidence on that, geodob? Medical doctors in the US are completely untrained in this stuff. She wouldn't get any help from a typical MD, and we're talking stuff that could be low because of a genetic defect. There's a camp that says you shouldn't take thyroid meds, that taking thyroid meds will supress your body's natural production, blah blah, but people still take them.

[Storygirl]

On 5/5/2018 at 3:28 PM, Southern Ivy said:

Oh, the ped IS definitely harping on the food. We had to have an actual appointment yesterday due to the weightloss. Still, she's so active that even if she eats a huge breakfast and a huge dinner, she's still barely gaining.

So she is taking it twice a day, but she doesn't eat lunch before her second dose? The beauty of taking two doses is that you can eat lunch once the morning dose has worn off and before the afternoon dose is given. If she is not hungry at lunch, I would consider delaying her lunchtime until she can eat and only give her the second dose after eating.

When DS14 takes the double dose, it can take 4-5 hours for that morning dose to wear off enough for him to eat. So think about how long that span of time is between breakfast and lunch. If you can extend it, she should be able to eat something.

If you find there is five hours of effectiveness, until she feels hungry, that should be plenty of time to get through her schoolwork, etc., before one dose wears off. Can she just take one pill per day and skip the afternoon dose? If you are thinking of taking her off the meds completely, it's worth seeing if doing them for just the morning will make enough of a difference.

I also agree with working on the pill swallowing, so that there are more options. I bet you can find another med that would be effective but let her feel better. We tried many kinds before landing on the one that works for DS. Once she can swallow something small, you may be able to cut an ADHD med into small enough pieces for her to swallow. For awhile, DS took 1.5 pills, so we split them routinely.

Another thought -- when DS was first diagnosed, the psychiatrist prescribed a small dose of Vyvance (I believe) to be the first med to try. He said to open the capsule and dissolve the meds in water, because he wanted us to start with just half the dose and work up to a whole capsule. As it turns out, we did not do that -- our pediatrician wanted to try a different med first. But perhaps opening a capsule and dissolving it in water could be an option for you, so that you could try something different than whatever you are trying in liquid version.

There is also something that comes in a patch. We have not tried it, but it exists.

I wonder if you worked with a doctor who was not so against meds if you could find someone who could offer you some other options, just because they will have more experience. I'm sure there is a reason you are sticking with this doctor. I'm just presenting it as food for thought.

Meds have made such a difference for DS, but it took us months to figure out the correct type and dosage.

[Storygirl]

This is just anecdotal, but when DS started his ADHD meds, he did drop a few pounds in the first few months. Maybe 5? I think he dropped from 65 to 60. And then he hovered at that lower weight for six months or so but didn't lose more. Then he started gaining again. Four years later, he has gained 40 pounds and I don't know how many inches in height.

So for him, the weight loss was temporary. The appetite suppressant effect of his meds is still a factor, but he eats plenty during the hours of his day when the meds are not on board.

I wish you well as you work to figure it out for your daughter! ?

[geodob]

The evidence was established back in 2012.  Here's a link to the research article:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3415362/

 

[PeterPan]

2 hours ago, geodob said:

The evidence was established back in 2012.  Here's a link to the research article:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3415362/

 

Ok, now THAT is really interesting. They're really addressing a different situation, because they're looking at people who have depression and therefore could have totally normal conversion of tryptophan to 5HTP, meaning their bodies already could have made all they need. They also mention high ceilings or even unlimited dosing, and they use doses that are WAY beyond what ANYBODY I've ready about is using for replacing what their body isn't making/converting. So like I personally am taking 400mg total per day, and this study cites people taking 2400mg. That's CRAZY high. 

Two, the article talks quite a bit about how to do it safely and gives a chart showing that when you bump up the 5HTP you also need to look at tyrosine. That's something I had been wondering, how to work on the attention piece, so now I'll go look into that. It doesn't seem like the article is saying NOT to take 5HTP, but rather that it's more complex than just handing someone 5HTP for depression.

I'm talking about a very targeted use, with people who have clear genetic issues causing it to be low, with people who are taking low amounts, with people who are committed to sorting out the complexities and what balances.

Also, it seemed like the biggest hurdle in that study was whether it actually worked. I can understand that if you're trying to treat depression in a population where the 5HTP might not even be low. You're then saying can we artificially raise it abnormally high and will that feel good. Well DUH. But the people I know who have the genetic markers for not converting tryptophan to 5HTP (which is in the chart on that study) DO feel better and DO notice improvement when they go on the 5HTP. I know one person who has gotten completely off prescription and OTC sleep aids as a result. That study doesn't even mention melatonin and 5HTP's affect on melatonin.

[Southern Ivy]

On 5/6/2018 at 9:36 PM, Storygirl said:

So she is taking it twice a day, but she doesn't eat lunch before her second dose? The beauty of taking two doses is that you can eat lunch once the morning dose has worn off and before the afternoon dose is given. If she is not hungry at lunch, I would consider delaying her lunchtime until she can eat and only give her the second dose after eating.

When DS14 takes the double dose, it can take 4-5 hours for that morning dose to wear off enough for him to eat. So think about how long that span of time is between breakfast and lunch. If you can extend it, she should be able to eat something.

If you find there is five hours of effectiveness, until she feels hungry, that should be plenty of time to get through her schoolwork, etc., before one dose wears off. Can she just take one pill per day and skip the afternoon dose? If you are thinking of taking her off the meds completely, it's worth seeing if doing them for just the morning will make enough of a difference.

 

She gets her dose around 8am, right after breakfast. Depending on the day, she won't be hungry until dinner time, even if she doesn't have the meds. ?‍♀️
I usually wait until she's eaten, but half the time, she won't eat anyway, or will only eat a few bites. 

[PeterPan]

Is this some kind of liquid that has a time release component, like vyvanse in a liquid, or is it something that should normally be gone in 3-4 hours?? I mean, it is possible for someone to be given meds who neurologically, biochemically, shouldn't be on them. I don't know, but it's a question to ask. How long does the product say it's supposed to last in her system? Normally you have to get extended release, vyvnase, something like that to have it lasting 12 hours. 

There's a urine collection they can do for neurotransmitter levels. Someone here mentioned it recently.