Re: New Member-partly off topic

[Guest guest]

Kim,..

Regarding the developmental delays, are they accross the board or just in one area (i.e. gross motor). At her age, you are probably talking mostly motor skills anyway, but if they are in all areas versus one or two would impact how to address them. Also, how she responds to the therapy is another indicator.

I work as a school psychologist so I deal with children with disabilities. Although I don't work with infants and toddlers, I have read the records of some children who had early delays. In some cases, the delays tend to respond well to the therapy and that's the end of it. These are the children that typically test out of special services when I do their re-evaluations at age 6 (if not before). They keep up with their peers at that point. Occasionally, there are some mild learning issues, but not anything significantly different from most of us, who have our struggles in some areas.

For the most part, the children that present with global delays (delays in all areas rather than just one or two) have ended up continuing to have disabilities into elementary school. This is especially true if progress is minimal. Not to scare you, but these are some of the cases I have seen:

a child who had a mild CP that didn't get reconized right away (although this was mostly motor milestones)

a few children with chromosomal abnormalities that were identified through genetic testing - outlook and severity varied

the most common is mild to moderate mental retardation or sometimes language-based learning disabilities. Occasionally, mild Autism is present, but usually only along with the mental retardation.

With all of these, early intervention is critical. If fact, I've seen the Autism disappear in some children by elementary school and I've seen IQ points jump by about 20 between age 4 and 6 when kids got services.

Feel free to email me if you'd like to talk more about this.

Okay - back to the head shape - I would go for the free eval to get measurements. If there's no CT in your area, there may be another local place that does them as well. Present this information to your doctor along with your request for the referral. You may need to consider where you are going in June because if you go for a helmet, you will need follow-up appointments at somewhere that you are at.

Hope this helps

, 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]

,

 

Thank you for sharing all of that information with me!

 

A little background on Mia... she was born at 37 weeks after hospital bedrest.. but she spent 2 weeks in the NICU due to cyanotic episodes. She had an EKG, chest x-rays, and extensive blood work - which was all normal. She had an Upper GI and pH Probe that showed severe Reflux. She was also a poor oral feeder, couldn't coordinate her breathing/pacing, and choked repeatedly at every feeding for months. She went home on a cardio/apnea monitor and we continued feeding therapy on an outpatient basis. Because she was always very stiff (fists held tightly by her face) and had some poor muscle tone in her face, her feeding therapist suggested evals with OT and PT for Hypotonia. So she started seeing them around 4 or 5 months. But again, we can't get in more than once every few weeks. At 8 1/2 months, she is finally rolling, and she can push up on her belly a bit, but she gets tired very quickly. Her tone does seem a bit better, but she just has such horrible upper body strength.. even in something like a bumbo seat, she just falls over to the side. In a high chair, she just slides right down unless reclined. She's not even close to sitting. She can finally pick up light toys, but she can't pass them from hand to hand yet, and she also can't use her pincher grasp yet. She also has difficulty letting go of objects. She has started making more 'noise', but no actual sounds/words. She has always been a poor eater and doesn't gain weight no matter what we do (she's currently on 30 calorie formula and we also add a thickener for her Dyphagia).. so either she doesn't have the strength for endurance, or the energy. A G-Tube is really the only option left, and we're exploring doing a Nissen Fundoplication for her Reflux.. but no decision has been made yet. Her body isn't on the charts for weight or length (25 inches and 15 pounds even at 8 1/2 months), but her head is nearly off of them. She has had a cranial ultrasound to check for Hydrocephalous, which they didn't see (but the penetrance was very weak because her fontanelles starting closing up). But she has never had a CT or MRI, which I have tried pushing for. She did have an x-ray of her spine because it curves outward at the bottom (and I had my own concerns about it being Kyphosis.. or moreso, the possibility that she could possibly have some form of Dwarfism), which they said was fine - but I'm really not sure that they even did the right x-ray series (they did it laying down, and when you lay down, your spine straightens). I'm just not okay with accepting that she's delayed 'just because she is'. And I would hate to find out much later on that it was really X, and we could have known that much earlier. Part of me wonders if she has such difficulty with support and balance because of the Torticollis/Plagiocephaly, but her doctor didn't have much to say about it. She leans to one side on her belly (the opposite side of the Torticollis) and " see-saws " on her belly from top to bottom. I'm really not sure if it's because her head is so heavy, if she's too weak, if it's because of her skull/tort, or none of the above.

 

Ahhhh... my mind races like this pretty much constantly! )

 

I would love to get a (free) evaluation, I just have no idea where you can do that or what I'd even need to ask for!

 

Kim

On Tue, Apr 7, 2009 at 7:39 AM, <melanie.watson@...> wrote:

Kim,..

 

Regarding the developmental delays, are they accross the board or just in one area (i.e. gross motor). At her age, you are probably talking mostly motor skills anyway, but if they are in all areas versus one or two would impact how to address them. Also, how she responds to the therapy is another indicator.

 

I work as a school psychologist so I deal with children with disabilities. Although I don't work with infants and toddlers, I have read the records of some children who had early delays. In some cases, the delays tend to respond well to the therapy and that's the end of it. These are the children that typically test out of special services when I do their re-evaluations at age 6 (if not before). They keep up with their peers at that point. Occasionally, there are some mild learning issues, but not anything significantly different from most of us, who have our struggles in some areas.

 

For the most part, the children that present with global delays (delays in all areas rather than just one or two) have ended up continuing to have disabilities into elementary school. This is especially true if progress is minimal. Not to scare you, but these are some of the cases I have seen:

 

a child who had a mild CP that didn't get reconized right away (although this was mostly motor milestones)

a few children with chromosomal abnormalities that were identified through genetic testing - outlook and severity varied

the most common is mild to moderate mental retardation or sometimes language-based learning disabilities. Occasionally, mild Autism is present, but usually only along with the mental retardation.

With all of these, early intervention is critical. If fact, I've seen the Autism disappear in some children by elementary school and I've seen IQ points jump by about 20 between age 4 and 6 when kids got services.

 

Feel free to email me if you'd like to talk more about this.

 

Okay - back to the head shape - I would go for the free eval to get measurements. If there's no CT in your area, there may be another local place that does them as well. Present this information to your doctor along with your request for the referral. You may need to consider where you are going in June because if you go for a helmet, you will need follow-up appointments at somewhere that you are at.

 

Hope this helps

 

, 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>>>>>  >

[Guest guest]

Kim-

How far are you from Charlotte? There is a Cranial Tech there and they could do

the free eval for you. Also, their offices are staffed by physical and

occupational therapists, so might even have some insight to the other issues

your daughter is dealing with, at least with how it relates to the tort/plagio.

There is also a StarBand provider (that uses the StarScanner) in Atlanta:

Children's Healthcare of Atlanta

, CO, LO

5445 Meridian Mark Road, Suite 200

Atlanta, GA 30342

404-785-5682, FAX 404-785-5690

Email: .@...

www.choa.org

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5

> > >

> > >> 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]

,

 

Just a few hours ago, I realized that everyone here was referring to Cranial Tech by CT. I originally thought everyone meant 'a cat scan place' and I was wondering how on earth I'd know if they did those kind of evaluations. Silly me, I don't know the lingo yet.. hehe.

 

But then I checked out there site and found one in Charlotte! It would be 3 hours, and I called and asked and they said that we do not need a prescription for the evaluation, which is good news. I searched but couldn't find where Starband locations where.. so thank you for that info!

 

Is one better than another?

 

Kim

On Tue, Apr 7, 2009 at 4:54 PM, <nwilkens2275@...> wrote:

Kim-How far are you from Charlotte? There is a Cranial Tech there and they could do the free eval for you. Also, their offices are staffed by physical and occupational therapists, so might even have some insight to the other issues your daughter is dealing with, at least with how it relates to the tort/plagio.

There is also a StarBand provider (that uses the StarScanner) in Atlanta:Children's Healthcare of Atlanta , CO, LO 5445 Meridian Mark Road, Suite 200Atlanta, GA 30342404-785-5682, FAX 404-785-5690

Email: .@... www.choa.org Jake-2.5 (DOCBand Grad 9/08)Jordan-5

> > >> > >> 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]

Hi Kim,

I'm sorry to hear Mia has so many problems. I hope they will find a diagnosis

that means they know how to help her. We were blessed with a healthy strong

baby, but one thing I wanted to mention is that if you are concerned about

hydrocephalus you should push for a CT scan. My daughter's head grew very fast

from birth to 6 mo, and there was some concern for hydrocephalus. However, she

had no delays, or other symptoms (and her length/weight were at the high end of

the scale) so they opted for an ultra sound. However it will only work if they

can get a good look through the fontanels, in our case they could. Our doctor

told us a CT scan was the " gold standard " when checking for hydrocephalus, but

didn't think it was needed in our case since the chances seemed low.

-christine

sydney, 3 yrs, starband grad

>

> ,

>

> Thank you for sharing all of that information with me!

>

> A little background on Mia... she was born at 37 weeks after hospital

> bedrest.. but she spent 2 weeks in the NICU due to cyanotic episodes. She

> had an EKG, chest x-rays, and extensive blood work - which was all normal.

> She had an Upper GI and pH Probe that showed severe Reflux. She was also a

> poor oral feeder, couldn't coordinate her breathing/pacing, and choked

> repeatedly at every feeding for months. She went home on a cardio/apnea

> monitor and we continued feeding therapy on an outpatient basis. Because she

> was always very stiff (fists held tightly by her face) and had some poor

> muscle tone in her face, her feeding therapist suggested evals with OT and

> PT for Hypotonia. So she started seeing them around 4 or 5 months. But

> again, we can't get in more than once every few weeks. At 8 1/2 months, she

> is finally rolling, and she can push up on her belly a bit, but she gets

> tired very quickly. Her tone does seem a bit better, but she just has such

> horrible upper body strength.. even in something like a bumbo seat, she just

> falls over to the side. In a high chair, she just slides right down unless

> reclined. She's not even close to sitting. She can finally pick up light

> toys, but she can't pass them from hand to hand yet, and she also can't use

> her pincher grasp yet. She also has difficulty letting go of objects. She

> has started making more 'noise', but no actual sounds/words. She has always

> been a poor eater and doesn't gain weight no matter what we do (she's

> currently on 30 calorie formula and we also add a thickener for her

> Dyphagia).. so either she doesn't have the strength for endurance, or the

> energy. A G-Tube is really the only option left, and we're exploring doing a

> Nissen Fundoplication for her Reflux.. but no decision has been made yet.

> Her body isn't on the charts for weight or length (25 inches and 15 pounds

> even at 8 1/2 months), but her head is nearly off of them. She has had a

> cranial ultrasound to check for Hydrocephalous, which they didn't see (but

> the penetrance was very weak because her fontanelles starting closing up).

> But she has never had a CT or MRI, which I have tried pushing for. She did

> have an x-ray of her spine because it curves outward at the bottom (and I

> had my own concerns about it being Kyphosis.. or moreso, the possibility

> that she could possibly have some form of Dwarfism), which they said was

> fine - but I'm really not sure that they even did the right x-ray series

> (they did it laying down, and when you lay down, your spine

> straightens). I'm just not okay with accepting that she's delayed 'just

> because she is'. And I would hate to find out much later on that it was

> really X, and we could have known that much earlier. Part of me wonders if

> she has such difficulty with support and balance because of the

> Torticollis/Plagiocephaly, but her doctor didn't have much to say about it.

> She leans to one side on her belly (the opposite side of the Torticollis)

> and " see-saws " on her belly from top to bottom. I'm really not sure if it's

> because her head is so heavy, if she's too weak, if it's because of her

> skull/tort, or none of the above.

>

> Ahhhh... my mind races like this pretty much constantly! )

>

> I would love to get a (free) evaluation, I just have no idea where you can

> do that or what I'd even need to ask for!

>

> Kim

>

[Guest guest]

Sydney,

 

I waiver on the line between thinking that I just make children with giant heads (our other daughter went through the same thing, rapid growth, and had a CT to rule it out) and wondering if it really could be that. Her head growth rate has slowed down, but it's still almost off the charts (18 1/4 cm at 8 1/2 months). Her length/weight aren't even on the charts, which is how she differs from our other daughter (she was huge all over, not just her head!). And they're very different children, our other daughter had NO symptoms of it at all, Mia has many. At the time, I was really thinking that Hydrocephalus could explain EVERYTHING.. but I had to push and push and push and LEAVE our last Pediatrician's office to get it. They literally said that they were doing it just to make me happy (shutup) because they didn't think there was anything wrong. Then again, they also let her suffer desperately from RSV before finally doing the same thing (pleasing me) by admitting her (where she stayed TWO WEEKS on Oxygen). Our new pediatrician is better, but not by much. And I know that there's no way she'll send us for a CT unless maybe I can convince her therapists to say something to her (doubtful). But we'll see. I'm really trying, but I feel like such a failure sometimes (.

 

Kim

On Wed, Apr 8, 2009 at 10:45 PM, christineashok <christineashok@...> wrote:

Hi Kim,I'm sorry to hear Mia has so many problems. I hope they will find a diagnosis that means they know how to help her. We were blessed with a healthy strong baby, but one thing I wanted to mention is that if you are concerned about hydrocephalus you should push for a CT scan. My daughter's head grew very fast from birth to 6 mo, and there was some concern for hydrocephalus. However, she had no delays, or other symptoms (and her length/weight were at the high end of the scale) so they opted for an ultra sound. However it will only work if they can get a good look through the fontanels, in our case they could. Our doctor told us a CT scan was the " gold standard " when checking for hydrocephalus, but didn't think it was needed in our case since the chances seemed low.

-christinesydney, 3 yrs, starband grad >

> ,> > Thank you for sharing all of that information with me!> > A little background on Mia... she was born at 37 weeks after hospital> bedrest.. but she spent 2 weeks in the NICU due to cyanotic episodes. She

> had an EKG, chest x-rays, and extensive blood work - which was all normal.> She had an Upper GI and pH Probe that showed severe Reflux. She was also a> poor oral feeder, couldn't coordinate her breathing/pacing, and choked

> repeatedly at every feeding for months. She went home on a cardio/apnea> monitor and we continued feeding therapy on an outpatient basis. Because she> was always very stiff (fists held tightly by her face) and had some poor

> muscle tone in her face, her feeding therapist suggested evals with OT and> PT for Hypotonia. So she started seeing them around 4 or 5 months. But> again, we can't get in more than once every few weeks. At 8 1/2 months, she

> is finally rolling, and she can push up on her belly a bit, but she gets> tired very quickly. Her tone does seem a bit better, but she just has such> horrible upper body strength.. even in something like a bumbo seat, she just

> falls over to the side. In a high chair, she just slides right down unless> reclined. She's not even close to sitting. She can finally pick up light> toys, but she can't pass them from hand to hand yet, and she also can't use

> her pincher grasp yet. She also has difficulty letting go of objects. She> has started making more 'noise', but no actual sounds/words. She has always> been a poor eater and doesn't gain weight no matter what we do (she's

> currently on 30 calorie formula and we also add a thickener for her> Dyphagia).. so either she doesn't have the strength for endurance, or the> energy. A G-Tube is really the only option left, and we're exploring doing a

> Nissen Fundoplication for her Reflux.. but no decision has been made yet.> Her body isn't on the charts for weight or length (25 inches and 15 pounds> even at 8 1/2 months), but her head is nearly off of them. She has had a

> cranial ultrasound to check for Hydrocephalous, which they didn't see (but> the penetrance was very weak because her fontanelles starting closing up).> But she has never had a CT or MRI, which I have tried pushing for. She did

> have an x-ray of her spine because it curves outward at the bottom (and I> had my own concerns about it being Kyphosis.. or moreso, the possibility> that she could possibly have some form of Dwarfism), which they said was

> fine - but I'm really not sure that they even did the right x-ray series> (they did it laying down, and when you lay down, your spine> straightens). I'm just not okay with accepting that she's delayed 'just

> because she is'. And I would hate to find out much later on that it was> really X, and we could have known that much earlier. Part of me wonders if> she has such difficulty with support and balance because of the

> Torticollis/Plagiocephaly, but her doctor didn't have much to say about it.> She leans to one side on her belly (the opposite side of the Torticollis)> and " see-saws " on her belly from top to bottom. I'm really not sure if it's

> because her head is so heavy, if she's too weak, if it's because of her> skull/tort, or none of the above.> > Ahhhh... my mind races like this pretty much constantly! )> > I would love to get a (free) evaluation, I just have no idea where you can

> do that or what I'd even need to ask for!> > Kim>