Can you help me think through this? (testing and therapy)

[momto3innc]

Hi all,

Hoping you can help me think through some things with my oldest son (almost 10).

About four years ago, when he was struggling terribly with learning to read and school in general, we had some testing done by an educational psychologist. He was diagnosed as dyslexic. His IQ was above average, working memory average, processing speed low. We started Orton Gillingham based tutoring (and I was eventually certified in OG so that I could teach him that way). He also had vision therapy for tracking/convergence issues and the VT worked on his primitive reflexes. Anyway, fast forward 4 years and he is an incredible reader with amazing comprehension. Would read all day if he could. Understands math very well, does well with mental math, he just works slowly. Struggles greatly with spelling and writing although I feel they are slowly improving.
The great thing about homeschooling is I can accommodate him so our school days are fairly smooth most of the time (although there are days where his slow speed drives me loony...although I hope I don't show it!). We are required to do standardized testing in my state and we do the Stanford Achievement Tests. Other than spelling, he does very well on the tests. Of course, it requires no writing. But I am wondering if it's time to do another evaluation with an educational psychologist since it's been four years. I guess I just wonder what an outside observer would say, but on the other hand, school is overall going well so I wonder if I'm overthinking it? But I wonder if I am so used to accommodating him that I don't have a great handle on how hard some things are for him? Not sure if that makes sense. He's just so different from four years ago I wonder if retesting would be valuable or just a repeat of before. I guess I'm wondering how often people do that sort of testing with kids with LDs.

The bigger issue is his speech. He's much better than he used to be but he continues to struggle with "r" and "l". He is definitely understandable most of the time, but just not totally clear. Kind of like the beginning/ending of words are not "crisp" if that makes sense. He has had therapy on and off but not a lot lately. It was very traditional therapy and I'm wondering if I need to look at OT as well. He has never been diagnosed with low muscle tone, but I'm pretty sure he has it. Probably not to a huge degree...maybe low end of normal? Or just lower than that? He could not do a sit up or push up to save his life. :) He's just kind of...floppy. Running is not fluid. So I guess I'm wondering how much the low muscle tone is also affecting his speech. So I don't know if that would mean looking at OT and Speech at the same time? Or a different kind of speech therapy? Or if I should definitely do OT for low muscle tone? We've mainly just thought of him as not an athletic kid (although he has done soccer and basketball with our town), but maybe we should be looking at it?

All this is influenced by the fact that we will pay for everything out of pocket. We have some savings we can use but it's not a ton. And it's just so expensive to do all of this. So I'm just trying to think through it all and feeling a bit overwhelmed. I guess I don't want to look back and realize I should have done something and didn't.

Thanks for any thoughts!!

Oh and I just picked up Dianne Craft's Brain Integration book at convention last weekend. Was thinking about doing that with him coming up.

[Lots of boys]

I don't have any good answers for you but I will be watching the responses closely. My youngest ds is only 5 but has apraxia, low tone and significant speech issues (apraxia of speech). I know he is showing early signs of dyslexia as well. I hope you get some good insight.

[OneStepAtATime]

No suggestions but way to go Mom for getting him diagnosed and helped early!  (I didn't)  You are way ahead of the game compared to many.  Hopefully someone can chime in with really useful suggestions.

[kbutton]

All ears as well. My DS 6 has symptoms of much of the above but no clear pattern (even with a WISC and Woodcock Johnson under our belt). The well-respected and speech person with the great creds tells us he is normal, but he is a mush mouth and clearly doesn't move his mouth the same way we do when we talk. It's getting better, but it's not great--I think he's making r more clearly but still not correctly (maybe learning a different wrong sound for it?). CAPD symptoms, but too early to test...very low muscle tone (gaining weight at a normal rate now, but isn't making up for failure to thrive when he was little). Low processing is a factor here, but he concentrates well, so that is nice. It's just tiring for him and slow.

 

I am glad to hear that many things have improved for your son, and I hope you get some solid advice on speech and other remaining issues. FWIW, my SIL was a voracious reader but received a dyslexia diagnosis as an adult. It's not all about reading, that's for sure!

[Jennifer-72]

I was told that often when you have speech you do have fine and gross motor delays as well. It was explained to me when ds was little that gross motor recruits fine motor which recruits the fine motor movements of speech, so u do think there is connection.

I would seek out an evaluation from a PT and OT. In order to save some expense, you can always ask them for treatment plans you can carry out at home and perhaps check in with them every 10 weeks or so for some updates.

[my3kids]

kbutton,

I have a question for you.  Does low muscle tone have any correlation with weight gain?

[PeterPan]

For the op, it's entirely possible he had apraxia of speech and that you're seeing remnants of it.  Therapy has changed a LOT in the last 10-12 years, so there's stuff now that wasn't even available when you started.  The therapy we use for my ds' apraxia is PROMPT, and I wouldn't feel AT ALL bashful about calling up PROMPT therapists within a sane drive of you and talking with them about your situation.  They can tell you if you need them or someone else, and they have the tools to dig in and determine what's going on.  If it's motor control (apraxia), they can get in there and work on it.  They'll be able to go through his speech and find where the glitches are.  So definitely I'd pursue that, as you're likely to get more help than you did years ago.  You find a PROMPT therapist through the PROMPT institute website.  Don't ask if they do it.  Just look on the PROMPT site.

 

I'll say I'm greatly encouraged by your tremendous success teaching your boy to read.  At this stage, things are so slow going, I'll take all the success stories I can!  :D

 

Oh the low tone.  Your ped can check that for you, but it sure sounds like you're right.  The ped will likely recommend OT, and sometimes they'll recommend a neurologist check.  There are actually some underlying reasons for the low tone, and sometimes they'll want to check.  That's another discussion.  Usually there's sensory and other stuff going on if you have low tone, etc., so you might end up connecting dots on some odd things he does that you didn't realize were connected.  

 

When you're paying it yourself, it's a matter of degrees.  With my dd we paid for the OT because she was having pain with writing.  With ds, I haven't paid yet.  I ought to, sigh, but I haven't found a new OT.  (That's my line and I'm sticking to it.)  I'm low tone and lived without OT, but I'm not *as* low tone as my kids.  Well I take that back, I'm not as low tone as my dd.  Ds and I are probably about the same.  I've heard talk Michael Phelps (the Olympic swimmer) is low tone.  It's good to know which joints are susceptible to injury, and you want to get the help if you have symptoms to deal with.  However it sometimes is just a breathe and move on kind of thing.  Just depends on the situation.  If you have problematic symptoms, I'd definitely get the OT eval.  If he's low tone and neither of his biological parents do, that to me would be odd and warrant some investigation.  You could have CP or something totally different that got missed, kwim?  So it just depends on the mix of what you're looking at.  

[Heathermomster]

OK...I have a low tone question.

OhE, so do exercises work for your DD's issues, and does she have to continually exercise since this seems to be a life long issue?

[PeterPan]

OK...I have a low tone question.

OhE, so do exercises work for your DD's issues, and does she have to continually exercise since this seems to be a life long issue?

You have a 14 yo, so you know that around 12-13 they sprout very furry mule ears and are not able to be compelled to do anything they don't wish to do.   ;)  We did it during the initial time for a fair number of weeks (I don't recall precisely), got our bump in skills (hurray), and moved on.  The theory I've read is that skills like this that are *used* will be maintained.  I have more of an interest in promoting overall EF development (more flow to that part of the brain, more wiring) than I do in a specific number of digits in her digit spans, kwim?  At this point she's FUNCTIONAL, and I pick my battles.  

 

I don't operate from the primary perspective that my dc is defective.  I don't wake up thinking every day that I need to do maintenance on some broken aspect of her.  

 

Btw, once they get enough functional skill, you're able to start using it in other ways, like board games.  Before the metronome work, Ticket to Ride required too much working memory for her to play enjoyably.  She played it, but it was really, really hard for her.  After the metronome + digit span work, she could play.  She still makes notes, but she's functional.  So once they have the ability to apply it to enjoyable tasks, it becomes self-reinforcing.  Yes I'd like to get her digit spans larger, but we pick our battles.  It's not like I started this when she was 8 and had no high school requirements, no independent/wayward thought.  She has other things she'd like to accomplish that would require more OT, more this and that, that we just aren't getting to.  You don't get everything done in life.

[Crimson Wife]

kbutton,
I have a question for you.  Does low muscle tone have any correlation with weight gain?

FWIW, my youngest has mild hypotonia and she also had hidden gluten intolerance. She was off-the-charts small for both weight and height but no obvious GI symptoms. She tested negative twice for celiac (2nd time extended panel) and wheat allergy (again 2nd time extended panel). When we switched her to a gluten- and casein-free diet she had a dramatic "catch up" wheat and height gain. She's still on the petite side, but normal petite like me, most of my family, and my older 2 kids. She's 5 and wearing a 5T.

She tested deficient in carnitine and responded well to acetyl-l-carnitine supplements. Someone on this forum suggested adding Coenzyme Q10 and that really helped as well. Both the carnitine and CoQ10 improved her speech as well as motor skills.

ETA: MCT Oil is supposed to be really good for tone issues but it's pricey to use in therapeutic doses so we just do a lot of coconut milk & coconut oil.

[EKS]

You are definitely going to want to get him retested in high school if he is going to need accommodations for the SAT/ACT as well as accommodations in college.  Both require recent testing.  Whether you get him retested now depends on his current age in relation to high school, how much you can afford to spend, and what you are looking to get out of it.

[texasmama]

By the age of your ds, these sounds (l and r) should be clear in his speech.  In your shoes, I would spend my money on speech/OT evals and treatment rather than the psycho-educational testing, particularly since school is going well.  It is great to hear a success story!

[momto3innc]

By the age of your ds, these sounds (l and r) should be clear in his speech.  In your shoes, I would spend my money on speech/OT evals and treatment rather than the psycho-educational testing, particularly since school is going well.  It is great to hear a success story!

 

Thanks so much to you all for all your replies!  I really appreciate it!  Regarding what I quoted...this is exactly the conclusion I came to yesterday as I was milling all this over.  I would really like the testing just for my benefit and for the extra knowledge it would give me, but really, we're overall doing okay and plugging along and I think it could wait another year or two.  The speech is an issue we need to be proactive about and as we have limited funds, should be where our focus goes to.  It's hard because he's a smart kid, but the ways that people normally might express that (speech and written word) are his most challenging areas.

 

Oh Elizabeth, I looked up the PROMPT therapy.  There is one about an hour away.  Farther than I'd like to go, but not awful.  I looked around on their website some and might call them later.  I'm not totally sure that is what he needs from reading on there, but would like to talk to them more and see.  When he has worked on sounds before (and now when we remind him), he can correctly say his "l" and "r" sounds alone and in words when he is focused on it.  But it hasn't stuck or carried into everyday speech in general most of the time and again, he just tends to slur and not be crisp.  If we ask him to repeat, he can do it clearly almost all of the time.  But again, not seeming to stick in day to day without reminders. There are two pediatric therapy places in our area that have both speech and OT at them so they would be ideal that we could do them both at the same place.  One seemed very pricey to me ($90 for a half hour).  Waiting to hear from the other but believe they are more reasonable.

 

Oh Elizabeth, also fascinating all you said about low tone.  I don't think my husband or I are.  He's fairly athletic (course I guess Michael Phelps is too  :laugh:  )  I was not at all athletic as a child (I mean, not at all) but am fairly active now.  When I did some reading online, it talked about fine motor control too.  I will say my husband has the worse fine motor skills ever.  He still asks me to cut stuff out for him and actually my other son (8) used to be in OT for fine motor when he was smaller (4) and improved a lot.  That one still can't tie his shoes. So there may be some genetic stuff there.  It hasn't been a huge issue in our everyday life (he rides a bike well, swims well...but is clumsy and such), so I think in order of importance, speech comes first.  Then low tone stuff.  Then later re-testing.  Definitely before high school.

 

Thanks for letting me think about some of this.  Also it was super encouraging to me that several of you mentioned a success story.  This was my first thought:  :confused1:  as it wouldn't be the initial way I think of us.  I think it can be easy to focus on the current issues and forget how far he has really come.  I really wouldn't have thought a few years ago that he would be reading Harry Potter and Lord of the Rings and that I'd be yelling at him to turn off his light at night and go to bed!  We worked REALLY hard his first grade year at the vision therapy and OG stuff.  Well, actually, and speech too that year.  The vision therapy made a tremendous difference for him...really huge.  And then the OG kind of went slowly and surely from there to where he is now.  But after that it's just been slow plugging away at spelling, writing, memorizing math facts, and again, SLOW speeds of doing them.  So I can forget all the good.  So thank you!  I'll be back to investigating speech and OT this coming week and going from there.

[momto3innc]

I don't operate from the primary perspective that my dc is defective.  I don't wake up thinking every day that I need to do maintenance on some broken aspect of her.  

 

By the way, I absolutely love this!  That is how I attempt to function as well.

[kbutton]

kbutton,

I have a question for you.  Does low muscle tone have any correlation with weight gain?

 

I read one time that children who are underweight as infants and toddlers have less muscle tone even as adults (I think they studied folks in their 30's). I asked the ped about it, but I think he didn't really hear my question as I intended it. He answered as if I was saying weight gain now, weight gain later, not muscle tone later. We presume that because my son was so underweight, he didn't develop muscles as quickly because it really did take a lot of effort and energy to lug his big head around, etc. So, no energy from not eating (he had reflux) + big head and no body mass = wasn't as active, and therefore, didn't develop as much muscle tone. I have no idea if the idea is bogus or not.

 

Another theory of mine--low muscle tone cascades into low tone in his sphincter, which causes reflux, which causes feeding and sleep issues. It was ALL a big mess, and the pediatrician we started out with turned out to "not believe in" reflux, we had to find a new one, etc. We had no red flags that couldn't be explained by reflux. I am not certain I made "good" milk, but all the BF books said that milk was milk, all moms make good milk (when I expressed milk, it had next to no fat in it). But my kiddo wouldn't eat any more formula than he would milk, so we kept BFing. We assumed he didn't have feeding trouble because he latched well and had my milk in before I was home from the hospital. However, maybe he had a weak suck, weak sphincter, and I had poor milk, and no one really knew. Bleh. Not fun times.

 

I am hoping to have both my kids evaluated by an OT. I feel like we can't take anything for granted with our kids anymore (older one has diagnosed issues).

 

[kbutton]

FWIW, my youngest has mild hypotonia and she also had hidden gluten intolerance. She was off-the-charts small for both weight and height but no obvious GI symptoms. She tested negative twice for celiac (2nd time extended panel) and wheat allergy (again 2nd time extended panel). When we switched her to a gluten- and casein-free diet she had a dramatic "catch up" wheat and height gain. She's still on the petite side, but normal petite like me, most of my family, and my older 2 kids. She's 5 and wearing a 5T.

She tested deficient in carnitine and responded well to acetyl-l-carnitine supplements. Someone on this forum suggested adding Coenzyme Q10 and that really helped as well. Both the carnitine and CoQ10 improved her speech as well as motor skills.

ETA: MCT Oil is supposed to be really good for tone issues but it's pricey to use in therapeutic doses so we just do a lot of coconut milk & coconut oil.

 

What is MCT oil? What kinds of testing did you have done? Our pediatrician is as open-minded as they come for our geographic area, but he's not going to be looking under the hood if there is not a glaring problem. He doesn't mind sending us for bloodwork because I was largely asymptomatic with my gluten troubles, but he feels the testing is unreliable and inconclusive without a biopsy. My son is very low on the weight side (but is currently gaining weight at a rate that is typical), and he's on the tall side (height is all over the map on both sides of the family). He never "caught up" after his failure to thrive as an infant, which is why he's still so thin. He is built like others in our extended family (the side that tends toward stick figure children who look like Mr. Peanut as adults) but not like my husband or me.

 

I would like to know more about my son's metabolism and potential deficiencies. He does eat better when he takes a multivitamin, and even better when we add in zinc.

 

We are having my son tested for gluten intolerance, but I need to stuff him full of it before testing. I am gluten free (by accident, so I have not been tested). As a byproduct of that, my kids tend to eat less gluten than a lot of folks. I don't want the test to give false negative because he wasn't eating enough. We had our older one tested years ago, and he doesn't show any problems (at the time he had some funny skin bumps on his elbows). I am hoping to have them each tested periodically. I have an uncle that is GF, and my husband's sister is GF, so it's a real possibility that my kids will have issues.

[Tokyomarie]

I agree that pursuing speech and OT evals would be the best choice for now. I would get evals from both disciplines, collate the data and recommendations, and then decide what to pursue in the way of therapy. In a few years, you will likely want to do updated psychoeducational testing, but for now, since academics is going well enough, you're probably ok waiting.

[Tokyomarie]

I am not certain I made "good" milk, but all the BF books said that milk was milk, all moms make good milk (when I expressed milk, it had next to no fat in it). But my kiddo wouldn't eat any more formula than he would milk, so we kept BFing. We assumed he didn't have feeding trouble because he latched well and had my milk in before I was home from the hospital. However, maybe he had a weak suck, weak sphincter, and I had poor milk, and no one really knew. Bleh. Not fun times.

 

I have been learning about tongue-tie and how this condition can impact feeding and growth, even for children who seem to have a "good enough" latch when breastfeeding. If a child doesn't have an effective suck that draws milk deeply from the breast, the infant doesn't get enough "hind milk," which is higher in fat. In this case, the infant gets enough fluid from foremilk during a feeding, but the lower fat milk doesn't satisfy for long. These infants often seem to nurse very frequently.

 

Tongue-tie is still not a well understood condition in many medical circles. However, it can influence breastfeeding and bottle feeding, as well as eating solid food and speech development. It can also lead to poor development of the jaw and the neck, which can lead to head, neck, and jaw/mouth pain later in life.

[Heathermomster]

You have a 14 yo, so you know that around 12-13 they sprout very furry mule ears and are not able to be compelled to do anything they don't wish to do.   ;)  We did it during the initial time for a fair number of weeks (I don't recall precisely), got our bump in skills (hurray), and moved on.  The theory I've read is that skills like this that are *used* will be maintained.  I have more of an interest in promoting overall EF development (more flow to that part of the brain, more wiring) than I do in a specific number of digits in her digit spans, kwim?  At this point she's FUNCTIONAL, and I pick my battles.  

 

I don't operate from the primary perspective that my dc is defective.  I don't wake up thinking every day that I need to do maintenance on some broken aspect of her.  

 

Btw, once they get enough functional skill, you're able to start using it in other ways, like board games.  Before the metronome work, Ticket to Ride required too much working memory for her to play enjoyably.  She played it, but it was really, really hard for her.  After the metronome + digit span work, she could play.  She still makes notes, but she's functional.  So once they have the ability to apply it to enjoyable tasks, it becomes self-reinforcing.  Yes I'd like to get her digit spans larger, but we pick our battles.  It's not like I started this when she was 8 and had no high school requirements, no independent/wayward thought.  She has other things she'd like to accomplish that would require more OT, more this and that, that we just aren't getting to.  You don't get everything done in life.

When I asked about low tone and exercising, I meant physical exercising such as with an exercise ball, not digit span or other memory work of that sort.  I wasn't even aware that dealing with low tone meant working on digit spans.  Interesting...

[PeterPan]

When I asked about low tone and exercising, I meant physical exercising such as with an exercise ball, not digit span or other memory work of that sort.  I wasn't even aware that dealing with low tone meant working on digit spans.  Interesting...

Oh sorry, I should take up coffee drinking or something so I'll keep track of threads better!   :lol:   Nope, mule ears again.  I can think of all kinds of things she could/should do, but that doesn't mean I can compel her.  Actually I'm trying to with the lure of a high school PE credit, but that's another story...  

 

So yes, if you do OT and then stop the activities and don't do anything to maintain, just like digit spans it will fritter away.  The neurology is going back to its set point.  The OT seemed to think vestibular work could help gains stick, but she didn't seem to think much would permanent unless you kept using it.

[kbutton]

I have been learning about tongue-tie and how this condition can impact feeding and growth, even for children who seem to have a "good enough" latch when breastfeeding. If a child doesn't have an effective suck that draws milk deeply from the breast, the infant doesn't get enough "hind milk," which is higher in fat. In this case, the infant gets enough fluid from foremilk during a feeding, but the lower fat milk doesn't satisfy for long. These infants often seem to nurse very frequently.

 

Tongue-tie is still not a well understood condition in many medical circles. However, it can influence breastfeeding and bottle feeding, as well as eating solid food and speech development. It can also lead to poor development of the jaw and the neck, which can lead to head, neck, and jaw/mouth pain later in life.

 

I am very open to the idea that he might have tongue tie (your description fits--he nursed 42 hours per week in little increments), but it certainly wasn't caught if he does. The hospital I gave birth in is as knowledgeable and BF friendly as it gets in this part of the country, and they checked him out. That doesn't mean he doesn't have one though--lots of things get missed, and my kids have a track record of being just a little too normal for problems to be easily found. It was suggested that my son wasn't getting enough hind milk, but I couldn't make him nurse when he hurt. I also didn't have any fat in my milk, no matter if I expressed before or after he ate, but I can't say that I was an expert on that either.

 

How would I get something like that evaluated now without sounding like a crazy person (it's not a real crunchy area of the US)? If tongue tie can affect all of that, it would be nice to rule it out.

 

On a side note, I recently read about lip ties somewhere, and it sounds like my older son to a T. I had never heard of it before. It was not the only potential problem, but if what I read was accurate and accounts for what was going on, it was the biggest issue. I didn't make it past two weeks nursing him--the physical damage was awful.

.
 

[Pen]

Hi all,

Hoping you can help me think through some things with my oldest son (almost 10).

About four years ago, when he was struggling terribly with learning to read and school in general, we had some testing done by an educational psychologist. He was diagnosed as dyslexic. His IQ was above average, working memory average, processing speed low. We started Orton Gillingham based tutoring (and I was eventually certified in OG so that I could teach him that way). He also had vision therapy for tracking/convergence issues and the VT worked on his primitive reflexes. Anyway, fast forward 4 years and he is an incredible reader with amazing comprehension. Would read all day if he could. Understands math very well, does well with mental math, he just works slowly. Struggles greatly with spelling and writing although I feel they are slowly improving.
The great thing about homeschooling is I can accommodate him so our school days are fairly smooth most of the time (although there are days where his slow speed drives me loony...although I hope I don't show it!). We are required to do standardized testing in my state and we do the Stanford Achievement Tests. Other than spelling, he does very well on the tests. Of course, it requires no writing. But I am wondering if it's time to do another evaluation with an educational psychologist since it's been four years. I guess I just wonder what an outside observer would say, but on the other hand, school is overall going well so I wonder if I'm overthinking it? But I wonder if I am so used to accommodating him that I don't have a great handle on how hard some things are for him? Not sure if that makes sense. He's just so different from four years ago I wonder if retesting would be valuable or just a repeat of before. I guess I'm wondering how often people do that sort of testing with kids with LDs.

 

I personally would not do another check for the above type problem this close to the prior one, and given finances etc.   Seems like all you mention is typical of dyslexia, which you already know he has....that could account for spelling and writing difficulties, though if low tone, that could enter in to physical issues with writing too...

The bigger issue is his speech. He's much better than he used to be but he continues to struggle with "r" and "l". He is definitely understandable most of the time, but just not totally clear. Kind of like the beginning/ending of words are not "crisp" if that makes sense. He has had therapy on and off but not a lot lately. It was very traditional therapy and I'm wondering if I need to look at OT as well. He has never been diagnosed with low muscle tone, but I'm pretty sure he has it. Probably not to a huge degree...maybe low end of normal? Or just lower than that? He could not do a sit up or push up to save his life. :) He's just kind of...floppy. Running is not fluid. So I guess I'm wondering how much the low muscle tone is also affecting his speech. So I don't know if that would mean looking at OT and Speech at the same time? Or a different kind of speech therapy? Or if I should definitely do OT for low muscle tone? We've mainly just thought of him as not an athletic kid (although he has done soccer and basketball with our town), but maybe we should be looking at it?

 

I would look into the muscle tone etc. issues, since at this time they seem to be not yet adequately understood or remediated, and to see what is going on and if possible if there is something you can do about it.  ...  or if I were pretty sure  that the problem was in fact low-tone, then I might go toward trying to figure out how to help it, and see if I could make headway directly, if possible.  Is it significant enough that you might get help from a local public school? My son had had speech trouble, and even at a point that he did not qualify for ST at a public school, the speech therapist gave me some ideas of how to work with him on his trouble areas.  Could there be a hearing issue with "r" v. "l" or just a problem saying them?

All this is influenced by the fact that we will pay for everything out of pocket. We have some savings we can use but it's not a ton. And it's just so expensive to do all of this. So I'm just trying to think through it all and feeling a bit overwhelmed. I guess I don't want to look back and realize I should have done something and didn't.

Thanks for any thoughts!!

Oh and I just picked up Dianne Craft's Brain Integration book at convention last weekend. Was thinking about doing that with him coming up.

 

[Heathermomster]

When DS was 4 days old, I furiously looked through one of my bf books and discovered tongue-tie.  Compared the picture in the book to my child and took him to the ped.  The ped clipped his frenulum right then and there.  Later, I discovered that FIL and BIL are both TT.

 

I wound up using a breast pump 24/7 for both my kiddos for 8 weeks besides storing up a bunch of frozen milk.  Those were the days...

[Tokyomarie]

How would I get something like that evaluated now without sounding like a crazy person (it's not a real crunchy area of the US)? If tongue tie can affect all of that, it would be nice to rule it out.

 

On a side note, I recently read about lip ties somewhere, and it sounds like my older son to a T. I had never heard of it before. It was not the only potential problem, but if what I read was accurate and accounts for what was going on, it was the biggest issue. I didn't make it past two weeks nursing him--the physical damage was awful.

.
 

 

My oldest daughter is the one in my family who knows about tongue-tie and finding experienced personnel to deal with it. Sometimes pediatricians will clip a tongue or lip tie in infants, but often a dentist who has developed a specialty in tongue and lip ties will be the one to take care of an older child or adult. I'll ask my daughter about how to find the right person and PM you some info.

[geodob]

Low muscle tone in itself isn't related to weight gain.

It is the ratio between physical activity and calorie intake that will cause the weight gain.

Yet with low muscle tone, people are generally still quite physically active.

 

Though it might be helpful to understand what 'low muscle tone' is?

Which is nothing to do with muscle strength.

Rather it is to do with how the muscles operate?

 

Our muscles are activated by a tiny electrical impulse. Produced in the nervous system.

But the important thing, is that their is a neural wire connected to both ends of every single muscle.

Where these connections can be thought of like 'volume controls'?

Which are turned up or down, to contract or relax a muscle.

 

So that with low muscle tone, what we are referring to, are degrees of difficulties with controlling muscle flexion/ extension.

Where the important distinction, is that it is not simply an on/off process?

But a refined control, that control the rate, from fast to slow.

 

Though another crucial factor, is that except for 'sphincter muscles', every muscle has its opposing muscle

Where the ability to control opposing muscles in unison, needs to be developed.

So that as one flexes, the other extends.

 

Then another important thing, is that a multitude of muscles, each need to be held in precise state of tension.

Which is what keeps you from flopping in your chair.

But perhaps you might consider the complexity, of keeping all of these muscles at their own level of tension, all at the same time?

How any movement, can cause a readjustment of them all?

Which requires overall 'motor planning' and coordination.

 

Though these 'receptors' at both ends of each muscle.

Are also what we use to form an internal spacial map of ourselves.

 

So that what is termed 'low muscle tone'?

Is a very broad term, for difficulties within this complex process.

[Crimson Wife]

What is MCT oil?

Medium Chain Triglyceride oil. It's one of the "good" fats like omega 3's but comes from coconut oil rather than fish or flaxseed oil. You can often find it sold at Whole Foods or GNC but as I mentioned earlier, it's expensive in therapeutic doses.

What kinds of testing did you have done? Our pediatrician is as open-minded as they come for our geographic area, but he's not going to be looking under the hood if there is not a glaring problem.

When my little one got her ASD diagnosis, I took the list of recommended tests from "Healing the New Childhood Epidemics" by Dr. Kenneth Bock to our pediatrician (she's on the "crunchy" side and supportive of using nutritional support to try to address issues). She went down the list and while she didn't order everything she did most of the nutrition-related ones. DD was still off-the-charts small at this point (it was before we took her off gluten) so she coded the testing under "failure to thrive" or something similar.

Everything came back normal except she was deficient on carnitine and also low on one marker in the cholesterol panel. Our pediatrician didn't know what to make of that last one and neither did our pediatric neurologist or our integrative neurodevelopmental pediatrician. It may or may not be clinically significant but nobody we've seen had any idea nor any suggestions on how to bring the marker back into the normal range.

I really should have her retested since it's been over 2 years. But our insurance has changed and we'd probably have to pay out-of-pocket using Direct Labs.

[kbutton]

Medium Chain Triglyceride oil. It's one of the "good" fats like omega 3's but comes from coconut oil rather than fish or flaxseed oil. You can often find it sold at Whole Foods or GNC but as I mentioned earlier, it's expensive in therapeutic doses.


When my little one got her ASD diagnosis, I took the list of recommended tests from "Healing the New Childhood Epidemics" by Dr. Kenneth Bock to our pediatrician (she's on the "crunchy" side and supportive of using nutritional support to try to address issues). She went down the list and while she didn't order everything she did most of the nutrition-related ones. DD was still off-the-charts small at this point (it was before we took her off gluten) so she coded the testing under "failure to thrive" or something similar.

Everything came back normal except she was deficient on carnitine and also low on one marker in the cholesterol panel. Our pediatrician didn't know what to make of that last one and neither did our pediatric neurologist or our integrative neurodevelopmental pediatrician. It may or may not be clinically significant but nobody we've seen had any idea nor any suggestions on how to bring the marker back into the normal range.

I really should have her retested since it's been over 2 years. But our insurance has changed and we'd probably have to pay out-of-pocket using Direct Labs.

 

Thanks! I thought it might be medium chain something since you use coconut oil in place of it, but I couldn't come up with triglycerides as the last piece. We use some coconut oil in recipes and cooking, but my little guy doesn't like fat at all. Not butter, not fatty meat, not anything fatty at all. He will drink some whole milk. He does like Smart Balance butter, but I have heard mixed reviews about that product. I hear good things about Earth Balance, but of course, he doesn't like that one either. :-)