RE: Baby care while waiting

January 12, 2012

No you aren't ridiculous! I think any of us would try anything....I have

actually read online some of the things you are trying, but don't remember

exactly where. Just remember that anyone can post something online...but

as I don't think these things would probably hurt Lucy its worth a try

right? Just use your best judgement as you always do

-I did the massage theory also with a nice smelling baby lotion.

-Avoid prolonged periods in car seat/swing/and such that would allow her

to slump over.

-Increased tummy time if it isn't painful (my son hated this & cried as if

in pain...just one of the things my doc brushed off!)

-I read online somewhere to try the carrying thing you are doing as a form

of traction I guess....? Not really sure if that would work but the nice

skin contact & bonding will be a blessing if you do have to cast you will

miss that just a little bit.

-maybe look into PT....I thought about it when we casted to help maintain

muscle tone in cast but we didn't as my son is on the high end of the

active side & the PA didn't see a benefit in our particular situation.

Still a great idea though!

-To encourage activity & muscle tone on the curved side stand on the

opposite side of the curve to change diapers & such...I'm not sure about

this one...I've always stood on that side of Levi to change diapers & he's

still in a cast...but I did read it somewhere along the way.

-I actually read somewhere that some people believe that the whole

campaign of putting a baby " back " to sleep might actually be causing an

increase in scoliosis. As Europe has higher rates of PIS & has been doing

the " back to sleep " idea a lot longer then the USA. But that it is still

the preferred method because it really reduces SIDS. I don't know how

much of that is actually medically researched vs someone just theorizing

but it is interesting....I think its probably just genetics though.

Like I said some of these sound like old wives tales, but if they aren't

going to hurt Lucy you could try while you are waiting. Glad you are

getting another opinion set up now instead of waiting until after your

follow up to get on someones list just in case things don't

resolve...that's smart you won't be wasting any precious time if you do

need to cast.

Best of luck,

Amber

mommy to Levi

> Hi folks,

> Thanks again - I got great info from my last post. We went to Boston

> Children's and were told that Lucy's RVAD was 6 (they didn't measure

> rotation or cobb) and to come back in 4.5 mos. We're still very anxious

> about the size of the rib hump (seems hard to believe that it will

> rectify) and worried about the accuracy of the xray measurements on a

> supine 5.5 mos old, but I think the outcome would be to wait and see

> anyways. We decided that if casting is needed we want it done at

> Rochester (we have family there), so we have an appointment there in early

> March. Hopefully that's enough time (and not too much) to see what

> direction we're going in.

>

> Is there anything we should be doing at home in the meantime? (are there

> any sources of info for this?)

>

> 1) Sleeping position: she currently sleeps on her tummy (i know, what are

> we thinking - but reflux has been a big problem for us). We're going to

> train her to sleep on her back this w/e (she literally cant sleep for more

> than 10mins on her back). I'm hoping this will help to flatten the hump

> (is this ridiculous?)

>

> 2) Massages: I've been giving her rib hump a massages after she falls

> asleep - to flatten it and to push the curve back - is this ridiculous

> also?

>

> 3) Physical Therapy: I've read here that some folks do PT on their babies

> - what type of exercises? We've increased tummy time significantly.

> Should we practice sitting to strengthen her core even though she still

> slumps forward and to the side (she hates this)?

>

> 4) What should we avoid/use: Avoid Bumboo baby and car seat? We have

> been carrying her a lot in the BabyBjorn Baby r (outwards) and

> trying to increase her Jumperoo time. How about her stroller?

>

> I feel like I'm making these care actions up since I haven't found any

> literature on this. Hopefully this topic is helpful to others who are

> waiting also.

>

> Thanks again everyone.

>

> (Lucy's dad)

>

> ----------------

>> Original Message:

>>

>> Hi Everyone,

>> I'm grateful to find you and thanks for having me. There's so much good

>> information here which I'm still working through.

>>

>> My 5.5 month daughter Lucy was just diagnosed with scoliosis - we knew

>> something was wrong by the hump on the upper right of her back, but

>> we're

>> still in shock and so scared. The radiologist called it a mild curve

>> with

>> no bone abnormalities. The curve seems to extend from the top to bottom

>> of her spine. We live in Boston and are heading to Children's Hospital

>> next week for a consultation so I will get more info then.

>>

>> We have family in Rochester NY so are also considering scheduling an

>> appt

>> at Strong Hospital since they seem highly regarded and experienced in

>> the

>> Mehta process. Does anyone have any experience with either Hospital? I

>> believe Boston Children's does practice Mehta but I will confirm.

>>

>> Lucy has no other health issues that we know of. She is a long thin

>> baby,

>> so we're worried about progression (I know it has progressed in the past

>> month by looking at her). We're also worried that she has an upper right

>> thoracic curve which has a 'worse' prognosis for females per the text

>> books.

>>

>> I assume the outcome of our Tuesday appointment at Boston Children's is

>> going to be to wait and watch. How long should we wait?

>>

>> Again, thank you all.

>>

>> (Lucy's dad)

>

January 12, 2012

I don't think you are ridiculous, however as a mom who has been there, if it is going to progress it is going to progress. I don't think anything you do is going to stop or slow that. I would just try to enjoy life for these next 6 weeks.

Something I would ask rochester is if there are going to be casting the next day if they think that is the best option. I know that for many parents they do, and you may want to be prepared for a couple days there.

January 13, 2012

Hi

I’m not sure what will make a

difference. If Lucy’s scoliosis is idiopathic, that means the

people studying the condition have found no correlation between any activity or

position and existence or worsening of the condition. I’m sure all

the extra time you spend with Lucy hands on will be enjoyed by her.

However as a mom whose daughter’s muscles controlling her right shoulder

and arm were paralyzed for the first 15 weeks of her life (due to Erb’s

palsy), I found that I could drive myself crazy worrying if I was doing enough

physical therapy at home or not doing enough, doing it right or doing it wrong?….when

what you really need to focus on is feeding them and getting enough sleep!

One hypothesis proposed in the literature

was the position of the baby while nursing was thought to contribute to

scoliosis formation. This really got my goat. Like nursing isn’t

emotionally charged enough, now we’re being accused of causing scoliosis in

our precious babies by not doing it right! I think scoliosis

happens. It’s frustrating to not know why, but I really don’t

think anything you do or don’t do at home will have that big of an

impact.

You only have a few weeks til March.

It will feel like an eternity but the most important thing is enjoy the squishy

hugs between now and her first cast.

I’ve also found that once a baby

rolls over, there is nothing you can do to keep them off their stomach at

night. That is, without giving up sleep yourself. If anyone knows

different, let me know! B/c my youngest is seven weeks old and hasn’t

gotten there yet. J

Sherry

Mom to 4yr old Eden in cast #8

January 13, 2012

Hi

Please check into the Jumperoo. Our daughter was 6 months old when her ortho surgeon here told us to stop using it. I wish I could remember exactly what the concern was (it has been over 5 years); something about the hips and causing separation between the joints, even though our daughter did not have any hip problems. He also said it was too high impact all together. I remember this because she loved her Jumperoo so much and would giggle and smile so much when in it, that it would make us laugh with delight. We got rid of it.

Also, we were referred to PT and they did exercises with the big ball (sit her on top while holding her and move to the opposite side of her curve and she would have to correct and balance). They also had us doing bending exercises; they stated they hoped it would keep her spine flexible and not become rigid. She had pretty bad torticollis, so we had to do neck stretches as well. They also had us put a rolled up towel on the opposite side of the curve when she was in her car seat or swing. A professional trained us all on this. Have you checked to see if she can get PT? Every child is different, but that is what we did, and we would never have done it without a professional teaching us. It helped the torticollis, but I am not sure if it helped with her scoliosis or not.

Hope this helps. Hang in there. You definitely found a great group of people.

~

From: lucysdad2011 <lucysdad711@...>Subject: Baby care while waitinginfantile scoliosis treatment Date: Thursday, January 12, 2012, 12:30 PM

Hi folks,Thanks again - I got great info from my last post. We went to Boston Children's and were told that Lucy's RVAD was 6 (they didn't measure rotation or cobb) and to come back in 4.5 mos. We're still very anxious about the size of the rib hump (seems hard to believe that it will rectify) and worried about the accuracy of the xray measurements on a supine 5.5 mos old, but I think the outcome would be to wait and see anyways. We decided that if casting is needed we want it done at Rochester (we have family there), so we have an appointment there in early March. Hopefully that's enough time (and not too much) to see what direction we're going in.Is there anything we should be doing at home in the meantime? (are there any sources of info for this?)1) Sleeping position: she currently sleeps on her tummy (i know, what are we thinking - but reflux has been a big problem for us). We're going to train her to sleep on her back this

w/e (she literally cant sleep for more than 10mins on her back). I'm hoping this will help to flatten the hump (is this ridiculous?)2) Massages: I've been giving her rib hump a massages after she falls asleep - to flatten it and to push the curve back - is this ridiculous also?3) Physical Therapy: I've read here that some folks do PT on their babies - what type of exercises? We've increased tummy time significantly. Should we practice sitting to strengthen her core even though she still slumps forward and to the side (she hates this)?4) What should we avoid/use: Avoid Bumboo baby and car seat? We have been carrying her a lot in the BabyBjorn Baby r (outwards) and trying to increase her Jumperoo time. How about her stroller?I feel like I'm making these care actions up since I haven't found any literature on this. Hopefully this topic is helpful to others who are waiting also.Thanks again

everyone.(Lucy's dad)----------------> Original Message:> > Hi Everyone,> I'm grateful to find you and thanks for having me. There's so much good> information here which I'm still working through.>> My 5.5 month daughter Lucy was just diagnosed with scoliosis - we knew> something was wrong by the hump on the upper right of her back, but we're> still in shock and so scared. The radiologist called it a mild curve with> no bone abnormalities. The curve seems to extend from the top to bottom> of her spine. We live in Boston and are heading to Children's Hospital> next week for a consultation so I will get more info then.>> We have family in Rochester NY so are also considering scheduling an appt> at Strong Hospital since they seem highly regarded and experienced in the> Mehta process. Does anyone have any experience with

either Hospital? I> believe Boston Children's does practice Mehta but I will confirm.>> Lucy has no other health issues that we know of. She is a long thin baby,> so we're worried about progression (I know it has progressed in the past> month by looking at her). We're also worried that she has an upper right> thoracic curve which has a 'worse' prognosis for females per the text> books.>> I assume the outcome of our Tuesday appointment at Boston Children's is> going to be to wait and watch. How long should we wait?>> Again, thank you all.>> (Lucy's dad)

January 13, 2012

Hi

Have you been able to view A New Direction dvd in the youtube portion of

www.infantilescoliosis.org, yet? The pioneer of ET has a few

recommendations in not aggravating the curve while you wait. Other than

that, I would just do everything normally. Gentle massage is always good.

HRH