Re: New Member- off topic

[Guest guest]

Yes, I would not buy that it is just because it is either with all of those things going on. My daughter also has reflux and barely ate at various periods with the associated weight gain trouble. I noticed that you mentioned Neocate and I'm guessing that's for weight gain. We were told to supplement with Neocate Jr. at 12 months because 's weight gain was so poor. She's allergic to dairy and wheat and I am still breastfeeding to ensure that her weight gain and nutrition are adequate. I have to eliminate dairy from my diet, but it's worth it to see her okay. Anyway, with her troubles, she hasn't had any stiffness or poor tone and her developmental milestones were all fine. That sounds like some sort of muscular or neurological difficulty rather than global delays. Maybe after you move, you'll get some answers. It sounds like you've done lots of research, but are blocked by poor medical care. With a diagnosis, you could be getting all sorts of free services.

Do you know what area you'll be moving to? You'll need to consider this if you manage to get a referral from a specialist.

, mom to , 19.5 months

20 weeks in STARband plus CST

land

Re: New Member,Thank you so much for taking the time to respond!Unfortunately, she recieves OT, PT, and SLP (for feeding).. but we can neverget in more than once every two weeks because their schedule is constantlycompletely booked with new evaluations. It really grates my nerves.. how canthey accept new patients for evaluations when their current patients can'tget the therapy they need because of it? Makes no sense! When we see ourpediatrician today, I told her that I didn't see how 2 minutes of stretchingevery 2 weeks was going to do any good (I do what I can at home, but I wastrying to make a point!).. but like everything else, she didn't have much tosay. Sigh.My husband is a Naval officer, so we'll only be here until June, which iswhy it's kind of pointless to try to find a new pediatrician now. This isactually our second pediatrician here who.. well.. doesn't seem to be ableto do more than handle immunizations and runny noses, and not actual medicalproblems. I just worry constantly that she's getting more behind, and I hatenot knowing WHY she has these issues (the developmental delays, especially).I really pushed for an MRI today in regard to her delays (she's at about a 4month level at 9 months and has such weak upper body strength).. but again,she just shrugged and said we'd wait. I don't get it. Wait for what,exactly? I've been waiting her whole life! Blah. Our old pediatrician reallycared, not just because it was her job. She was the kind of doctor who wouldgo above and beyond, call you herself on the weekend to check on things,consult with specialists just to 'be sure', and so on. We really need adoctor like that, but there doesn't seem to be any here! So we would have togo into Atlanta (which I would do, even though it would be 2 hours roundtrip!) to find someone who can handle actual problems.. but by the time wegot in, we'd be moving and I'm not sure we'd make any progress.I'm rambling, sorry! You're right, though.. lately I feel so much pressureto look more into it because of her age - but our pediatrician just doesn'tsee any reason to investigate anything further, ever (did I say thatalready? ha!). She just wants to 'wait and see', even though that's clearlynot working! I can tell you that her head isn't completely flat, which iswhy I would use the word 'mild' - I have seen much worse. But at the sametime, you can also tell that there's 'more head' on the left than the rightwhen looking from the back (if that makes sense), and her weak side inregard to the Torticollis is also the left. She did refer to that kind ofskull deformity as something that I can't recall now, but meaning how it'smisshapen and in the front there's even more to one side - but sheessentially brushed it off. I always leave more frustrated than when I goin!I had no idea that CT offices would measure at no cost, do you have any ideahow I would find out or what I would need to ask?I did try to take some pictures.. I'm not sure how well they came out (it'sso hard to capture the true angle of things, I tried - I give you all majorkudos!), but I'll try to upload them here!On Mon, Apr 6, 2009 at 2:00 PM, Lina Gabriev <lina.gabriev@...> wrote:> If she has been in PT for quite some time and there isn't much> improvement on the tort, it might not be mild. I would push to get a> referral to a craniofacial plastic surgeon for a second opinion on both the> tort and plagio. Hopefully others here know of some good people in your> area to see.>> My daughter had bad tort and while PT was helping, it wasn't helping> enough. She went in for surgery (botox to relax the muscle) at 6 months old> to help resolve it. At this point they are considering a second one, but> are giving PT two more months to work out what's left first. We've been in> PT 2-3 times a week since she was a couple weeks old. She's now considered> to have a mild case of tort, but if there continues to be no improvement in> the knot that's left, we'll help it along with botox.>> For her plagio, has she been measured? Various places (think all CT> offices) will do an evaluation and measure her for free. Measurements> aren't the whole picture, but they will give you and the doctors a better> idea of how mild or not she really is and if banding is a good option.> Generally banding is recommended if the asymmetry is 10mm or more.>> I would push for a referral ASAP because if banding is an option for you,> you're quickly leaving the stage with the fastest growth. You can band for> some time yet, but the earlier the better your results will be.>> > Elaine (twin A), plagio & tort, 10mos, 2nd band since 1/5/09>> On Mon, Apr 6, 2009 at 2:08 PM, kjacquegk <kjnellamore@...> wrote:>>> Hello everyone! I somehow came upon this group through a blog, and I am>> so glad to have found it.>>>> Our sweet girl, Mia (almost 9 months), has several issues - including>> Plagiocephaly and Torticollis. We moved late last year and left our fabulous>> pediatrician, and our new pediatrician really isn't proactive about any of>> her medical needs. Unfortunately, we don't really have time to find another>> one here (and we would need to travel at least an hour).. but I simply don't>> want to waste time if this can be corrected.>>>> She is in physical therapy (for this and other issues) and has been for>> quite some time, but even with positioning and stretches, her Torticollis is>> still apparent. Her head tilts down to the left, and the flatness on her>> head is mostly on the back right and toward the middle, clearly from having>> more pressure on that side over time because of developmental delays. Our>> pediatrician basically wrote it off as 'normal' these days due to the back>> to sleep campaign, and that it's more prevalent now, do more tummy time>> (does she not think we've tried that?), etc. She agrees that her head is>> mishapen, she just doesn't want to do anything about it (or anything else).>> Needless to say, that's not exactly helpful - but this is unfortunately how>> she approaches all of her issues.>>>> Anyway, my question is - has anyone's child dealt with both Torticollis>> and Plagiocephaly, both in a mild form? How did you treat it?>>>> And of course, if anyone lives in Georgia, please let me know!>>>> Kim>>>>> >

[Guest guest]

I agree with you about the delays.. it just doesn't seem to add up. I hate not having a good 'reason'. Especially when people ask what's wrong with her. There's no big dagnosis to give them. She has all kinds of issues, but none have been connected yet.

 

She switched to Neocate because of a suspected dairy allergy.. Neocate is amino-acid based, pre-digested, and lactose free. It's like the 'next step' above something like Nutrimagen. Without concentrating it, it's 20 calories/ounce like every other formula. We mix the Neocate to 24 calories and then we add Duocal to get up to 30 calories.. and then we add Simply Thick to thicken it. It's quite the cocktail, ha!

 

Unfortunately, I don't know where we're moving yet. I should know next week, though!

 

Kim

On Tue, Apr 7, 2009 at 5:34 PM, <melanie.watson@...> wrote:

Yes, I would not buy that it is just because it is either with all of those things going on. My daughter also has reflux and barely ate at various periods with the associated weight gain trouble. I noticed that you mentioned Neocate and I'm guessing that's for weight gain. We were told to supplement with Neocate Jr. at 12 months because 's weight gain was so poor. She's allergic to dairy and wheat and I am still breastfeeding to ensure that her weight gain and nutrition are adequate. I have to eliminate dairy from my diet, but it's worth it to see her okay. Anyway, with her troubles, she hasn't had any stiffness or poor tone and her developmental milestones were all fine. That sounds like some sort of muscular or neurological difficulty rather than global delays. Maybe after you move, you'll get some answers. It sounds like you've done lots of research, but are blocked by poor medical care. With a diagnosis, you could be getting all sorts of free services.

 

Do you know what area you'll be moving to? You'll need to consider this if you manage to get a referral from a specialist.

 

, mom to , 19.5 months

20 weeks in STARband plus CST

land

  

Re: New Member,Thank you so much for taking the time to respond!Unfortunately, she recieves OT, PT, and SLP (for feeding).. but we can never

get in more than once every two weeks because their schedule is constantlycompletely booked with new evaluations. It really grates my nerves.. how canthey accept new patients for evaluations when their current patients can't

get the therapy they need because of it? Makes no sense! When we see ourpediatrician today, I told her that I didn't see how 2 minutes of stretchingevery 2 weeks was going to do any good (I do what I can at home, but I was

trying to make a point!).. but like everything else, she didn't have much tosay. Sigh.My husband is a Naval officer, so we'll only be here until June, which iswhy it's kind of pointless to try to find a new pediatrician now. This is

actually our second pediatrician here who.. well.. doesn't seem to be ableto do more than handle immunizations and runny noses, and not actual medicalproblems. I just worry constantly that she's getting more behind, and I hate

not knowing WHY she has these issues (the developmental delays, especially).I really pushed for an MRI today in regard to her delays (she's at about a 4month level at 9 months and has such weak upper body strength).. but again,

she just shrugged and said we'd wait. I don't get it. Wait for what,exactly? I've been waiting her whole life! Blah. Our old pediatrician reallycared, not just because it was her job. She was the kind of doctor who would

go above and beyond, call you herself on the weekend to check on things,consult with specialists just to 'be sure', and so on. We really need adoctor like that, but there doesn't seem to be any here! So we would have to

go into Atlanta (which I would do, even though it would be 2 hours roundtrip!) to find someone who can handle actual problems.. but by the time wegot in, we'd be moving and I'm not sure we'd make any progress.

I'm rambling, sorry! You're right, though.. lately I feel so much pressureto look more into it because of her age - but our pediatrician just doesn'tsee any reason to investigate anything further, ever (did I say that

already? ha!). She just wants to 'wait and see', even though that's clearlynot working! I can tell you that her head isn't completely flat, which iswhy I would use the word 'mild' - I have seen much worse. But at the same

time, you can also tell that there's 'more head' on the left than the rightwhen looking from the back (if that makes sense), and her weak side inregard to the Torticollis is also the left. She did refer to that kind of

skull deformity as something that I can't recall now, but meaning how it'smisshapen and in the front there's even more to one side - but sheessentially brushed it off. I always leave more frustrated than when I go

in!I had no idea that CT offices would measure at no cost, do you have any ideahow I would find out or what I would need to ask?I did try to take some pictures.. I'm not sure how well they came out (it's

so hard to capture the true angle of things, I tried - I give you all majorkudos!), but I'll try to upload them here!On Mon, Apr 6, 2009 at 2:00 PM, Lina Gabriev <lina.gabriev@...> wrote:

>    If she has been in PT for quite some time and there isn't much> improvement on the tort, it might not be mild.  I would push to get a> referral to a craniofacial plastic surgeon for a second opinion on both the

> tort and plagio.  Hopefully others here know of some good people in your> area to see.>> My daughter had bad tort and while PT was helping, it wasn't helping> enough.  She went in for surgery (botox to relax the muscle) at 6 months old

> to help resolve it.  At this point they are considering a second one, but> are giving PT two more months to work out what's left first.  We've been in> PT 2-3 times a week since she was a couple weeks old.  She's now considered

> to have a mild case of tort, but if there continues to be no improvement in> the knot that's left, we'll help it along with botox.>> For her plagio, has she been measured?  Various places (think all CT

> offices) will do an evaluation and measure her for free.  Measurements> aren't the whole picture, but they will give you and the doctors a better> idea of how mild or not she really is and if banding is a good option.

> Generally banding is recommended if the asymmetry is 10mm or more.>> I would push for a referral ASAP because if banding is an option for you,> you're quickly leaving the stage with the fastest growth.  You can band for

> some time yet, but the earlier the better your results will be.>> > Elaine (twin A), plagio & tort, 10mos, 2nd band since 1/5/09>> On Mon, Apr 6, 2009 at 2:08 PM, kjacquegk <kjnellamore@...> wrote:

>>>   Hello everyone! I somehow came upon this group through a blog, and I am>> so glad to have found it.>>>> Our sweet girl, Mia (almost 9 months), has several issues - including

>> Plagiocephaly and Torticollis. We moved late last year and left our fabulous>> pediatrician, and our new pediatrician really isn't proactive about any of>> her medical needs. Unfortunately, we don't really have time to find another

>> one here (and we would need to travel at least an hour).. but I simply don't>> want to waste time if this can be corrected.>>>> She is in physical therapy (for this and other issues) and has been for

>> quite some time, but even with positioning and stretches, her Torticollis is>> still apparent. Her head tilts down to the left, and the flatness on her>> head is mostly on the back right and toward the middle, clearly from having

>> more pressure on that side over time because of developmental delays. Our>> pediatrician basically wrote it off as 'normal' these days due to the back>> to sleep campaign, and that it's more prevalent now, do more tummy time

>> (does she not think we've tried that?), etc. She agrees that her head is>> mishapen, she just doesn't want to do anything about it (or anything else).>> Needless to say, that's not exactly helpful - but this is unfortunately how

>> she approaches all of her issues.>>>> Anyway, my question is - has anyone's child dealt with both Torticollis>> and Plagiocephaly, both in a mild form? How did you treat it?>>

>> And of course, if anyone lives in Georgia, please let me know!>>>> Kim>>>>>  >