Frustrated

[Guest guest]

,

Unfortun ately 3 weeks is soon to get in with a pedi ns! Please let me know

what you find out when you go. I hope you got my email!

Dobbs <ohana_is_love@...> wrote:

>Hi everyone,

>

>My daughter Kaitlyn was dianosed with Chiari Malformation, when she got her MRI

last week.

>Dr. S in Chicago wants us to see the Neurosurgen 1st, before we start casting.

>To see if she'll need surgery or just have it watched.  I'm beside myself

because the soonest apt. time I could get with our local Chilrens Hospital is

the 30th of June.  like 3 1/2 wks away...

>and I know we can't loose that time...with her scoli.

>Not sure what to do...I want a pediatric Neuro.  for sure...and Childrens

Hosp. here at home seems to be the only option. 

>Should I go and call around to find another...who can get her in sooner?

>Any advance?

>Thanks

>

>Mommy to Isaac (3 1/2) and Kaitlyn (11 months) 39 deg curve and Chiari..

>

>

>

[Guest guest]

Terry,

I'm new here. I would search under residential treatment centers instead of

group homes. Residential treatment centers are treatment based and my son has

been in 2 of them. I'm in CO so I can't help you with Florida but I picked one

in NM because it was the best on for him. Don't limit yourself to just one area.

Group homes tend to be less theraputic. Hope that helps some.

Jackie

>

> i didnt want to start a debate on group homes...that was not my intention.all

i asked was if anyone knew of any group homes in south florida...i havent

recieved any responses to that question.

>

[Guest guest]

> >

> > i didnt want to start a debate on group homes...that was not my

intention.all i asked was if anyone knew of any group homes in south florida...i

havent recieved any responses to that question.

> >

>

thank you for your help

[Guest guest]

, I'm not sure if you remember my story with , but I know exactly how you feel. struggled with a runny nose until we started Singulair and Zyertec for allergy type symptoms. Under the age of 2 they will not diagnosis allergies or asthma but treat them the same way. She had a runny nose continuously until we started treating and zero runny nose since then and she goes to daycare. It is worth a try with your pediatrician if they think it is right for her.Let me know if you have any other questions b/c we have been through it if it could happen. Alyssa Sent from my iPhone 4On Aug 24, 2010, at 8:20 AM, <ohana_is_love@...> wrote:

Hi all,

Just feeling frustrated this morning.

Thought I would share with people who understand..

Kaitlyns nose is still running, if you all remember, she was cabcelled for her 1st cast back on the 10th...for being sick..fever ect.

She hasn't ran a fever in almost two weeks, however her nose is still runny.

I'm doing all I know to do..to stop it.

Breathing treatments (in hopes of clearing any possible congestion) and saline drops.

Maybe it's allergies??? I'm just really nervous about her new cast date..on the 2nd. I reallly don't want them to cancel again!

Just seems like a lot has stood in our way for getting her casted.

I mean we've known about this since May. Ugh...I know it's getting worse..you can see little changes.

Any prayers and good thoughts for Kaity are welcomed

Thx for letting me vent

-mommy to Kaitlyn (13months) 1st cast Sep 2nd (fingers crossed)

Sent from my iPod

[Guest guest]

Hi Alyssa,Thx that is helpful.I was thinking it could be allergies, i'm going toGet benydril today and try it, until she can seeher Ped. I will ask him about those allergy meds.Thx Mommy to Kaitlyn (13months) 1st cast Sep 2ndSent from my iPodOn Aug 24, 2010, at 9:30 AM, Alyssa <rogersalyssa12@...> wrote:

, I'm not sure if you remember my story with , but I know exactly how you feel. struggled with a runny nose until we started Singulair and Zyertec for allergy type symptoms. Under the age of 2 they will not diagnosis allergies or asthma but treat them the same way. She had a runny nose continuously until we started treating and zero runny nose since then and she goes to daycare. It is worth a try with your pediatrician if they think it is right for her.Let me know if you have any other questions b/c we have been through it if it could happen. Alyssa Sent from my iPhone 4On Aug 24, 2010, at 8:20 AM, <ohana_is_love@...> wrote:

Hi all,

Just feeling frustrated this morning.

Thought I would share with people who understand..

Kaitlyns nose is still running, if you all remember, she was cabcelled for her 1st cast back on the 10th...for being sick..fever ect.

She hasn't ran a fever in almost two weeks, however her nose is still runny.

I'm doing all I know to do..to stop it.

Breathing treatments (in hopes of clearing any possible congestion) and saline drops.

Maybe it's allergies??? I'm just really nervous about her new cast date..on the 2nd. I reallly don't want them to cancel again!

Just seems like a lot has stood in our way for getting her casted.

I mean we've known about this since May. Ugh...I know it's getting worse..you can see little changes.

Any prayers and good thoughts for Kaity are welcomed

Thx for letting me vent

-mommy to Kaitlyn (13months) 1st cast Sep 2nd (fingers crossed)

Sent from my iPod

[Guest guest]

If you are going to do benedryl I would consider Zyertec it is over the counter like benedryl but it will not make her sleepy or as sleepy. It is recommended for 2 and older I think on the bottle but our ped just cut the dose in half. We take 2 cc( ml). We take it at night before bed. AlyssaSent from my iPhone 4On Aug 24, 2010, at 8:43 AM, <ohana_is_love@...> wrote:

Hi Alyssa,Thx that is helpful.I was thinking it could be allergies, i'm going toGet benydril today and try it, until she can seeher Ped. I will ask him about those allergy meds.Thx Mommy to Kaitlyn (13months) 1st cast Sep 2ndSent from my iPodOn Aug 24, 2010, at 9:30 AM, Alyssa <rogersalyssa12@...> wrote:

, I'm not sure if you remember my story with , but I know exactly how you feel. struggled with a runny nose until we started Singulair and Zyertec for allergy type symptoms. Under the age of 2 they will not diagnosis allergies or asthma but treat them the same way. She had a runny nose continuously until we started treating and zero runny nose since then and she goes to daycare. It is worth a try with your pediatrician if they think it is right for her.Let me know if you have any other questions b/c we have been through it if it could happen. Alyssa Sent from my iPhone 4On Aug 24, 2010, at 8:20 AM, <ohana_is_love@...> wrote:

Hi all,

Just feeling frustrated this morning.

Thought I would share with people who understand..

Kaitlyns nose is still running, if you all remember, she was cabcelled for her 1st cast back on the 10th...for being sick..fever ect.

She hasn't ran a fever in almost two weeks, however her nose is still runny.

I'm doing all I know to do..to stop it.

Breathing treatments (in hopes of clearing any possible congestion) and saline drops.

Maybe it's allergies??? I'm just really nervous about her new cast date..on the 2nd. I reallly don't want them to cancel again!

Just seems like a lot has stood in our way for getting her casted.

I mean we've known about this since May. Ugh...I know it's getting worse..you can see little changes.

Any prayers and good thoughts for Kaity are welcomed

Thx for letting me vent

-mommy to Kaitlyn (13months) 1st cast Sep 2nd (fingers crossed)

Sent from my iPod

[Guest guest]

Oh, so Zyertec is over the counter?I don't know why, but I thought that was prescriptionmedication. Well, in that case I will try Zyertec, I hatehow tired benedryl makes you. I will double check with her Ped. thoughThank you! Sent from my iPodOn Aug 24, 2010, at 10:01 AM, Alyssa <rogersalyssa12@...> wrote:

If you are going to do benedryl I would consider Zyertec it is over the counter like benedryl but it will not make her sleepy or as sleepy. It is recommended for 2 and older I think on the bottle but our ped just cut the dose in half. We take 2 cc( ml). We take it at night before bed. AlyssaSent from my iPhone 4On Aug 24, 2010, at 8:43 AM, <ohana_is_love@...> wrote:

Hi Alyssa,Thx that is helpful.I was thinking it could be allergies, i'm going toGet benydril today and try it, until she can seeher Ped. I will ask him about those allergy meds.Thx Mommy to Kaitlyn (13months) 1st cast Sep 2ndSent from my iPodOn Aug 24, 2010, at 9:30 AM, Alyssa <rogersalyssa12@...> wrote:

, I'm not sure if you remember my story with , but I know exactly how you feel. struggled with a runny nose until we started Singulair and Zyertec for allergy type symptoms. Under the age of 2 they will not diagnosis allergies or asthma but treat them the same way. She had a runny nose continuously until we started treating and zero runny nose since then and she goes to daycare. It is worth a try with your pediatrician if they think it is right for her.Let me know if you have any other questions b/c we have been through it if it could happen. Alyssa Sent from my iPhone 4On Aug 24, 2010, at 8:20 AM, <ohana_is_love@...>

wrote:

Hi all,

Just feeling frustrated this morning.

Thought I would share with people who understand..

Kaitlyns nose is still running, if you all remember, she was cabcelled for her 1st cast back on the 10th...for being sick..fever ect.

She hasn't ran a fever in almost two weeks, however her nose is still runny.

I'm doing all I know to do..to stop it.

Breathing treatments (in hopes of clearing any possible congestion) and saline drops.

Maybe it's allergies??? I'm just really nervous about her new cast date..on the 2nd. I reallly don't want them to cancel again!

Just seems like a lot has stood in our way for getting her casted.

I mean we've known about this since May. Ugh...I know it's getting worse..you can see little changes.

Any prayers and good thoughts for Kaity are welcomed

Thx for letting me vent

-mommy to Kaitlyn (13months) 1st cast Sep 2nd (fingers crossed)

Sent from my iPod

[Guest guest]

Oh I forgot to tell you that like Tylenol, Zyertec was recalled, so I buy the store brand version like CVS or Target brand that is similar. AlyssaSent from my iPhone 4On Aug 24, 2010, at 9:13 AM, <ohana_is_love@...> wrote:

Oh, so Zyertec is over the counter?I don't know why, but I thought that was prescriptionmedication. Well, in that case I will try Zyertec, I hatehow tired benedryl makes you. I will double check with her Ped. thoughThank you! Sent from my iPodOn Aug 24, 2010, at 10:01 AM, Alyssa <rogersalyssa12@...> wrote:

If you are going to do benedryl I would consider Zyertec it is over the counter like benedryl but it will not make her sleepy or as sleepy. It is recommended for 2 and older I think on the bottle but our ped just cut the dose in half. We take 2 cc( ml). We take it at night before bed. AlyssaSent from my iPhone 4On Aug 24, 2010, at 8:43 AM, <ohana_is_love@...> wrote:

Hi Alyssa,Thx that is helpful.I was thinking it could be allergies, i'm going toGet benydril today and try it, until she can seeher Ped. I will ask him about those allergy meds.Thx Mommy to Kaitlyn (13months) 1st cast Sep 2ndSent from my iPodOn Aug 24, 2010, at 9:30 AM, Alyssa <rogersalyssa12@...> wrote:

, I'm not sure if you remember my story with , but I know exactly how you feel. struggled with a runny nose until we started Singulair and Zyertec for allergy type symptoms. Under the age of 2 they will not diagnosis allergies or asthma but treat them the same way. She had a runny nose continuously until we started treating and zero runny nose since then and she goes to daycare. It is worth a try with your pediatrician if they think it is right for her.Let me know if you have any other questions b/c we have been through it if it could happen. Alyssa Sent from my iPhone 4On Aug 24, 2010, at 8:20 AM, <ohana_is_love@...>

wrote:

Hi all,

Just feeling frustrated this morning.

Thought I would share with people who understand..

Kaitlyns nose is still running, if you all remember, she was cabcelled for her 1st cast back on the 10th...for being sick..fever ect.

She hasn't ran a fever in almost two weeks, however her nose is still runny.

I'm doing all I know to do..to stop it.

Breathing treatments (in hopes of clearing any possible congestion) and saline drops.

Maybe it's allergies??? I'm just really nervous about her new cast date..on the 2nd. I reallly don't want them to cancel again!

Just seems like a lot has stood in our way for getting her casted.

I mean we've known about this since May. Ugh...I know it's getting worse..you can see little changes.

Any prayers and good thoughts for Kaity are welcomed

Thx for letting me vent

-mommy to Kaitlyn (13months) 1st cast Sep 2nd (fingers crossed)

Sent from my iPod

[Guest guest]

,

Londynn was the same way and she now takes Singulair and Zyrtec - we also had

tubes put in her ears, as she was cancelled for her 1st casting because of an

ear infection (most likely caused by constant the eustachian tubes not being

able to drain all of the fluid from the allergies) - Get started right away if

you can - Singulair is a preventative medicine not an immediate fix kind.

I thought in a previous post you may have mentioned that you just started her on

milk - maybe another mom?- but if so - you may try alleviating the milk for a

week to see if that makes a difference.

Wishing you the best!

Cyndy

>

> >

> > Hi all,

> > Just feeling frustrated this morning.

> > Thought I would share with people who understand..

> > Kaitlyns nose is still running, if you all remember, she was cabcelled for

her 1st cast back on the 10th...for being sick..fever ect.

> > She hasn't ran a fever in almost two weeks, however her nose is still runny.

> > I'm doing all I know to do..to stop it.

> > Breathing treatments (in hopes of clearing any possible congestion) and

saline drops.

> > Maybe it's allergies??? I'm just really nervous about her new cast date..on

the 2nd. I reallly don't want them to cancel again!

> > Just seems like a lot has stood in our way for getting her casted.

> > I mean we've known about this since May. Ugh...I know it's getting

worse..you can see little changes.

> > Any prayers and good thoughts for Kaity are welcomed

> > Thx for letting me vent

> > -mommy to Kaitlyn (13months) 1st cast Sep 2nd (fingers crossed)

> > Sent from my iPod

> >

> >

>

[Guest guest]

There's Children's Claritin too. My son, and a few other kids I know, have adverse reactions to Benadryl (makes him bounce off the walls!), but my understanding from our doctor and pharmacist, Claritin is the gentlest of all those types of meds.

Just my $.02

Jane

From: Alyssa <rogersalyssa12@...>"infantile scoliosis treatment " <infantile scoliosis treatment >Sent: Tue, August 24, 2010 7:01:13 AMSubject: Re: Frustrated

If you are going to do benedryl I would consider Zyertec it is over the counter like benedryl but it will not make her sleepy or as sleepy. It is recommended for 2 and older I think on the bottle but our ped just cut the dose in half. We take 2 cc( ml). We take it at night before bed.

AlyssaSent from my iPhone 4

On Aug 24, 2010, at 8:43 AM, <ohana_is_love@...> wrote:

Hi Alyssa,

Thx that is helpful.

I was thinking it could be allergies, i'm going to

Get benydril today and try it, until she can see

her Ped. I will ask him about those allergy meds.

Thx

Mommy to Kaitlyn (13months) 1st cast Sep 2ndSent from my iPod

On Aug 24, 2010, at 9:30 AM, Alyssa <rogersalyssa12@...> wrote:

,

I'm not sure if you remember my story with , but I know exactly how you feel. struggled with a runny nose until we started Singulair and Zyertec for allergy type symptoms. Under the age of 2 they will not diagnosis allergies or asthma but treat them the same way. She had a runny nose continuously until we started treating and zero runny nose since then and she goes to daycare. It is worth a try with your pediatrician if they think it is right for her.

Let me know if you have any other questions b/c we have been through it if it could happen.

Alyssa Sent from my iPhone 4

On Aug 24, 2010, at 8:20 AM, <ohana_is_love@...> wrote:

Hi all,Just feeling frustrated this morning.Thought I would share with people who understand..Kaitlyns nose is still running, if you all remember, she was cabcelled for her 1st cast back on the 10th...for being sick..fever ect.She hasn't ran a fever in almost two weeks, however her nose is still runny.I'm doing all I know to do..to stop it.Breathing treatments (in hopes of clearing any possible congestion) and saline drops. Maybe it's allergies??? I'm just really nervous about her new cast date..on the 2nd. I reallly don't want them to cancel again! Just seems like a lot has stood in our way for getting her casted. I mean we've known about this since May. Ugh...I know it's getting worse..you can see little changes.Any prayers and good thoughts for Kaity are welcomed :)Thx for letting me vent -mommy to Kaitlyn (13months) 1st cast Sep 2nd (fingers crossed) Sent from my

iPod

[Guest guest]

Hi Cyndy,Yes, I was the mama who was talking about milk.She was on soy formula until 12 months and then herPed. put her on whole milk to see how it was going to go.We recently switched her back to soy, to see ifthat would help. Her nose did slow down, with the switchback. Do you think taking her off of milk altogether untilher casting is over, would help? I'm open toany suggestions! I just gave her some of her brothers Claratin, it's allI havecurrently. Her bro. has allergies too.ThxSent from my iPodOn Aug 24, 2010, at 10:45 AM, "mckinneys" <clmckinney64@...> wrote:

,

Londynn was the same way and she now takes Singulair and Zyrtec - we also had tubes put in her ears, as she was cancelled for her 1st casting because of an ear infection (most likely caused by constant the eustachian tubes not being able to drain all of the fluid from the allergies) - Get started right away if you can - Singulair is a preventative medicine not an immediate fix kind.

I thought in a previous post you may have mentioned that you just started her on milk - maybe another mom?- but if so - you may try alleviating the milk for a week to see if that makes a difference.

Wishing you the best!

Cyndy

>

> >

> > Hi all,

> > Just feeling frustrated this morning.

> > Thought I would share with people who understand..

> > Kaitlyns nose is still running, if you all remember, she was cabcelled for her 1st cast back on the 10th...for being sick..fever ect.

> > She hasn't ran a fever in almost two weeks, however her nose is still runny.

> > I'm doing all I know to do..to stop it.

> > Breathing treatments (in hopes of clearing any possible congestion) and saline drops.

> > Maybe it's allergies??? I'm just really nervous about her new cast date..on the 2nd. I reallly don't want them to cancel again!

> > Just seems like a lot has stood in our way for getting her casted.

> > I mean we've known about this since May. Ugh...I know it's getting worse..you can see little changes.

> > Any prayers and good thoughts for Kaity are welcomed

> > Thx for letting me vent

> > -mommy to Kaitlyn (13months) 1st cast Sep 2nd (fingers crossed)

> > Sent from my iPod

> >

> >

>

[Guest guest]

Thank you Jane,I agree, my son already takes it.As a matter of fact, I gave Kaity some this morning.We will see how she does Sent from my iPodOn Aug 24, 2010, at 10:56 AM, Jane Bigler <janemhar@...> wrote:

There's Children's Claritin too. My son, and a few other kids I know, have adverse reactions to Benadryl (makes him bounce off the walls!), but my understanding from our doctor and pharmacist, Claritin is the gentlest of all those types of meds.

Just my $.02

Jane

From: Alyssa <rogersalyssa12@...>"infantile scoliosis treatment " <infantile scoliosis treatment >Sent: Tue, August 24, 2010 7:01:13 AMSubject: Re: Frustrated

If you are going to do benedryl I would consider Zyertec it is over the counter like benedryl but it will not make her sleepy or as sleepy. It is recommended for 2 and older I think on the bottle but our ped just cut the dose in half. We take 2 cc( ml). We take it at night before bed.

AlyssaSent from my iPhone 4

On Aug 24, 2010, at 8:43 AM, <ohana_is_love@...> wrote:

Hi Alyssa,

Thx that is helpful.

I was thinking it could be allergies, i'm going to

Get benydril today and try it, until she can see

her Ped. I will ask him about those allergy meds.

Thx

Mommy to Kaitlyn (13months) 1st cast Sep 2ndSent from my iPod

On Aug 24, 2010, at 9:30 AM, Alyssa <rogersalyssa12@...> wrote:

,

I'm not sure if you remember my story with , but I know exactly how you feel. struggled with a runny nose until we started Singulair and Zyertec for allergy type symptoms. Under the age of 2 they will not diagnosis allergies or asthma but treat them the same way. She had a runny nose continuously until we started treating and zero runny nose since then and she goes to daycare. It is worth a try with your pediatrician if they think it is right for her.

Let me know if you have any other questions b/c we have been through it if it could happen.

Alyssa Sent from my iPhone 4

On Aug 24, 2010, at 8:20 AM, <ohana_is_love@...> wrote:

Hi all,Just feeling frustrated this morning.Thought I would share with people who understand..Kaitlyns nose is still running, if you all remember, she was cabcelled for her 1st cast back on the 10th...for being sick..fever ect.She hasn't ran a fever in almost two weeks, however her nose is still runny.I'm doing all I know to do..to stop it.Breathing treatments (in hopes of clearing any possible congestion) and saline drops. Maybe it's allergies??? I'm just really nervous about her new cast date..on the 2nd. I reallly don't want them to cancel again! Just seems like a lot has stood in our way for getting her casted. I mean we've known about this since May. Ugh...I know it's getting worse..you can see little changes.Any prayers and good thoughts for Kaity are welcomed :)Thx for letting me vent -mommy to Kaitlyn (13months) 1st cast Sep 2nd (fingers crossed) Sent from my

iPod

[Guest guest]

I'm not sure about taking her off of milk completely - if you have put her back

on soy there may be other environmental things that she has become sensitive to.

Before giving her another dose of Claritin check with your ped or pharmacist -

Londynn is under 2 and they do not recommend us giving her Claritin - they

wanted us to use Zyrtec - not sure why - but the Pharmacist may be able to

explain.

If her lungs are clear they will most likely cast - I know it is a roller

coaster hoping for perfect timing to get them in. Our next casting is the end

of September - already worried about whether she will stay well.

Does she have frequent ear infections? The tubes seemed to help alot for us.

Cyndy

> >

> > >

> > > Hi all,

> > > Just feeling frustrated this morning.

> > > Thought I would share with people who understand..

> > > Kaitlyns nose is still running, if you all remember, she was cabcelled for

her 1st cast back on the 10th...for being sick..fever ect.

> > > She hasn't ran a fever in almost two weeks, however her nose is still

runny.

> > > I'm doing all I know to do..to stop it.

> > > Breathing treatments (in hopes of clearing any possible congestion) and

saline drops.

> > > Maybe it's allergies??? I'm just really nervous about her new cast

date..on the 2nd. I reallly don't want them to cancel again!

> > > Just seems like a lot has stood in our way for getting her casted.

> > > I mean we've known about this since May. Ugh...I know it's getting

worse..you can see little changes.

> > > Any prayers and good thoughts for Kaity are welcomed

> > > Thx for letting me vent

> > > -mommy to Kaitlyn (13months) 1st cast Sep 2nd (fingers crossed)

> > > Sent from my iPod

> > >

> > >

> >

>

[Guest guest]

Sorry, ..This is very frustrating...I cant tell you how many times

this happened to all of us...Not that that makes it any easier for

you...But, lil Kaitlyn will get in....Its been so long since I had a baby

in the house, I have no advice...I just wanted to reassure you that she

will get casted when the time is right....and that will be very soon.

Just keep doin what you're doin....She'll get in.

4 sure.

hRH

>

> Hi all,

> Just feeling frustrated this morning.

> Thought I would share with people who understand..

> Kaitlyns nose is still running, if you all remember, she was cabcelled for

> her 1st cast back on the 10th...for being sick..fever ect.

> She hasn't ran a fever in almost two weeks, however her nose is still

> runny.

> I'm doing all I know to do..to stop it.

> Breathing treatments (in hopes of clearing any possible congestion) and

> saline drops.

> Maybe it's allergies??? I'm just really nervous about her new cast

> date..on the 2nd. I reallly don't want them to cancel again!

> Just seems like a lot has stood in our way for getting her casted.

> I mean we've known about this since May. Ugh...I know it's getting

> worse..you can see little changes.

> Any prayers and good thoughts for Kaity are welcomed

> Thx for letting me vent

> -mommy to Kaitlyn (13months) 1st cast Sep 2nd (fingers crossed)

> Sent from my iPod

>

>

>

>

[Guest guest]

Thank you ! :)Sent from my iPodOn Aug 24, 2010, at 3:57 PM, heather@... wrote:

Sorry, ..This is very frustrating...I cant tell you how many times

this happened to all of us...Not that that makes it any easier for

you...But, lil Kaitlyn will get in....Its been so long since I had a baby

in the house, I have no advice...I just wanted to reassure you that she

will get casted when the time is right....and that will be very soon.

Just keep doin what you're doin....She'll get in.

4 sure.

hRH

>

> Hi all,

> Just feeling frustrated this morning.

> Thought I would share with people who understand..

> Kaitlyns nose is still running, if you all remember, she was cabcelled for

> her 1st cast back on the 10th...for being sick..fever ect.

> She hasn't ran a fever in almost two weeks, however her nose is still

> runny.

> I'm doing all I know to do..to stop it.

> Breathing treatments (in hopes of clearing any possible congestion) and

> saline drops.

> Maybe it's allergies??? I'm just really nervous about her new cast

> date..on the 2nd. I reallly don't want them to cancel again!

> Just seems like a lot has stood in our way for getting her casted.

> I mean we've known about this since May. Ugh...I know it's getting

> worse..you can see little changes.

> Any prayers and good thoughts for Kaity are welcomed

> Thx for letting me vent

> -mommy to Kaitlyn (13months) 1st cast Sep 2nd (fingers crossed)

> Sent from my iPod

>

>

>

>

[Guest guest]

Hopes & Prayers coming your way! Sierra had seasonal allergies just before she got 1st cast! Everything went fine & she got it on April 22nd. She is now on 3rd cast. I know you want to get that 1 st cast under your belt! It will happen!Kristi Mommy to Summer 16 mo. Old 3rd cast 34 degrees down to 17 in cast.Sent From Kristi's i-PhoneOn Aug 25, 2010, at 8:53 AM, <ohana_is_love@...> wrote:

Thank you ! :)Sent from my iPodOn Aug 24, 2010, at 3:57 PM, heather@... wrote:

Sorry, ..This is very frustrating...I cant tell you how many times

this happened to all of us...Not that that makes it any easier for

you...But, lil Kaitlyn will get in....Its been so long since I had a baby

in the house, I have no advice...I just wanted to reassure you that she

will get casted when the time is right....and that will be very soon.

Just keep doin what you're doin....She'll get in.

4 sure.

hRH

>

> Hi all,

> Just feeling frustrated this morning.

> Thought I would share with people who understand..

> Kaitlyns nose is still running, if you all remember, she was cabcelled for

> her 1st cast back on the 10th...for being sick..fever ect.

> She hasn't ran a fever in almost two weeks, however her nose is still

> runny.

> I'm doing all I know to do..to stop it.

> Breathing treatments (in hopes of clearing any possible congestion) and

> saline drops.

> Maybe it's allergies??? I'm just really nervous about her new cast

> date..on the 2nd. I reallly don't want them to cancel again!

> Just seems like a lot has stood in our way for getting her casted.

> I mean we've known about this since May. Ugh...I know it's getting

> worse..you can see little changes.

> Any prayers and good thoughts for Kaity are welcomed

> Thx for letting me vent

> -mommy to Kaitlyn (13months) 1st cast Sep 2nd (fingers crossed)

> Sent from my iPod

>

>

>

>

[Guest guest]

Prayers are headed your way! Patty, mom of Isabella, 3 years old, in 7th scoli cast (Rochester) & mom to (9) & Evan(6)From: <ohana_is_love@...>"infantile scoliosis treatment " <infantile scoliosis treatment >Sent: Tue, August 24, 2010 9:20:06 AMSubject: Frustrated

Hi all,

Just feeling frustrated this morning.

Thought I would share with people who understand..

Kaitlyns nose is still running, if you all remember, she was cabcelled for her 1st cast back on the 10th...for being sick..fever ect.

She hasn't ran a fever in almost two weeks, however her nose is still runny.

I'm doing all I know to do..to stop it.

Breathing treatments (in hopes of clearing any possible congestion) and saline drops.

Maybe it's allergies??? I'm just really nervous about her new cast date..on the 2nd. I reallly don't want them to cancel again!

Just seems like a lot has stood in our way for getting her casted.

I mean we've known about this since May. Ugh...I know it's getting worse..you can see little changes.

Any prayers and good thoughts for Kaity are welcomed

Thx for letting me vent

-mommy to Kaitlyn (13months) 1st cast Sep 2nd (fingers crossed)

Sent from my iPod

[Guest guest]

Hi nn,

My daughter has had systemic Jra for 11 years, and she came down with

it in 5th grade. You aren't being wimpy. Being a parent of a systemic

is like being a soldier in a battle. You fight and fight, but one can

and does get weary. Also, I have found one of the most difficult parts

of this disease are the decisions we have to make.

n has been on enbrel and kineret. We had to stop both because the

enbrel quit working and the kineret never did work. As you know, each

child is different. And yes, I do know a systemic who is on enbrel and

is doing well. (I will meet him tonight for the first time in 11

years. His name is Josh)

No decision is in black and white with this disease. All have their

pros and cons. Perhaps, writing the pros and cons down on paper might

help. Also, your daughter might have a preference. We always

discussed things with n. Take care, (n,21,systemic)

Sent from my iPod

On Aug 27, 2010, at 8:11 AM, " nn " <rosannwinn@...> wrote:

> Happy Friday everyone,

> I guess I'm looking for some encouragement today. is finishing

> her 2nd week of school so far this year - just started 4th grade.

> Things are okay, but not great. I hate that she is struggling with

> JIA. As parents I guess Greg and I are in the frustration/anger

> stage of this systemic JIA diagnosis. It's been only 10 months I

> know, but it's hitting us that this is chronic now, that it will

> stay with for God knows how many years, maybe forever. She's

> been on max dose methotrexate for almost 4 months - the last three

> weeks injectible. She's still on the 5mg pred with no current plan

> to reduce. We switched to Mobic (from Ibuprofen) and while it's

> great to dose only 1x per day instead of 3-4 I'm thiking the Mobic

> isn't working as well. We've seen breakthrough low grade fevers, a

> slight rash again, and definitely joint pain and swelling. We have

> labs on Monday - the first time we've gone a full 4 weeks between

> draws - much better than when it was 2x per week! Maybe it's that

> sinking feeling a few days before blood draws that's bumming me out

> today. There are always more decisions, more medications to add, and

> I know I should be thankful that we have choices, options. Usually

> our Rheumy would try Enbrel next but of course recent research on

> Kineret shows it is very effective with systemic. Has anyone here

> found relief from systemic on Enbrel? We are wondering if we should

> try it before the Kineret, or just make the jump to the daily shot

> with a medication that might have a better chance at being

> effective. I apologize if I sound weak and wimpy today - just

> looking for some encouragement from those who know what this is

> like. It's hard to put on the bus with a low grade fever and

> joint aches, with all the other kiddos (including my 5 year old)

> bouncing around and not having to deal with what lives with

> daily.

>

> nn

> mom to , age 9, SO-JIA, diagnosed Nov 09

>

>

[Guest guest]

I sure hope that they can get things smoothed out for soon. I know how

tough it is to watch one child bounce and laugh when the other has difficulty

just getting where they need to go. It breaks your heart every single day, and

you do not get used to it. I understand your frustration completely. Life for

a child should not be like this but it is and we have to do the best we can to

help them. My daughter has had many different health issues basically all of

her life. These issues have made her the strong positive person that I dearly

love. We do not deal with the systemic. Jaye is poly. I do not know much

about systemic other then the posts I read and then I do not keep all that

information in my head. Jaye is on methotrexate, hydroxichloroquine,

mobic, folic acid, prevacid & Keppra. When she was on steroids a few weeks ago

for a severe bout of poisin ivy she was feeling pretty good. After they weined

her off the steroids she has so much less energy. I hope you can get past the

fear of her having to deal with this for all of her life. None of us know if we

will be able to get to an unmedicated remission or not. I pray for that for my

daughter as well as all the other kids on this list. I just fight for the best

and stay positive most of the time. We like that we have to get the labs drawn

just every two or three months now and not more often. I make sure that I

coordinate her lab draws with each of her doctors so that they take all they

need at one time to satisfy both the neurologoist and rheumy. I hope the

injectible mtx will work better then the oral did for you. We never did take it

orally, we started with the shots and it took six weeks to see some improvement

and a full three months to see alot of improvement. Patience is a wonderful

thing but it is very difficult when you are trying to fix a child.

Veri & Jaye 16 poly

frustrated

Happy Friday everyone,

I guess I'm looking for some encouragement today. is finishing her 2nd

week of school so far this year - just started 4th grade. Things are okay, but

not great. I hate that she is struggling with JIA. As parents I guess Greg and I

are in the frustration/anger stage of this systemic JIA diagnosis. It's been

only 10 months I know, but it's hitting us that this is chronic now, that it

will stay with for God knows how many years, maybe forever. She's been on

max dose methotrexate for almost 4 months - the last three weeks injectible.

She's still on the 5mg pred with no current plan to reduce. We switched to Mobic

(from Ibuprofen) and while it's great to dose only 1x per day instead of 3-4 I'm

thiking the Mobic isn't working as well. We've seen breakthrough low grade

fevers, a slight rash again, and definitely joint pain and swelling. We have

labs on Monday - the first time we've gone a full 4 weeks between draws - much

better than when it was 2x per week! M aybe it's that sinking feeling a few days

before blood draws that's bumming me out today. There are always more decisions,

more medications to add, and I know I should be thankful that we have choices,

options. Usually our Rheumy would try Enbrel next but of course recent research

on Kineret shows it is very effective with systemic. Has anyone here found

relief from systemic on Enbrel? We are wondering if we should try it before the

Kineret, or just make the jump to the daily shot with a medication that might

have a better chance at being effective. I apologize if I sound weak and wimpy

today - just looking for some encouragement from those who know what this is

like. It's hard to put on the bus with a low grade fever and joint aches,

with all the other kiddos (including my 5 year old) bouncing around and not

having to deal with what lives with daily.

nn

mom to , age 9, SO-JIA, diagnosed Nov 09

[Guest guest]

I have been down your road. My arthritis is polyarticular but it is everywhere

except my shoulders. I am on 1mL of MTX. I was forced off of prednisone and

after that I was miserable. I have been on MTX. since February I am not going

to say it hasn't helped, but it hasn't helped to the point of making flares less

miserable. I think all of you know that I may start the biologics soon, but if I

were you I would do what you think will help . Ask your rhuemy what will

be the next step will be if the mtx. won't work. I wish I could tell you that it

will be easy. But for me medication lingo isn't easy at all. I hope that this

helps.

Sending hugs!

Best wishes Shea Reasoner

________________________________

From: nn <rosannwinn@...>

Sent: Fri, August 27, 2010 11:11:14 AM

Subject: frustrated

Happy Friday everyone,

I guess I'm looking for some encouragement today. is finishing her 2nd

week of school so far this year - just started 4th grade. Things are okay, but

not great. I hate that she is struggling with JIA. As parents I guess Greg and

I are in the frustration/anger stage of this systemic JIA diagnosis. It's been

only 10 months I know, but it's hitting us that this is chronic now, that it

will stay with for God knows how many years, maybe forever. She's been on

max dose methotrexate for almost 4 months - the last three weeks injectible.

She's still on the 5mg pred with no current plan to reduce. We switched to

Mobic (from Ibuprofen) and while it's great to dose only 1x per day instead of

3-4 I'm thiking the Mobic isn't working as well. We've seen breakthrough low

grade fevers, a slight rash again, and definitely joint pain and swelling. We

have labs on Monday - the first time we've gone a full 4 weeks between draws -

much better than when it was 2x per week! Maybe it's that sinking feeling a few

days before blood draws that's bumming me out today. There are always more

decisions, more medications to add, and I know I should be thankful that we have

choices, options. Usually our Rheumy would try Enbrel next but of course recent

research on Kineret shows it is very effective with systemic. Has anyone here

found relief from systemic on Enbrel? We are wondering if we should try it

before the Kineret, or just make the jump to the daily shot with a medication

that might have a better chance at being effective. I apologize if I sound weak

and wimpy today - just looking for some encouragement from those who know what

this is like. It's hard to put on the bus with a low grade fever and

joint aches, with all the other kiddos (including my 5 year old) bouncing around

and not having to deal with what lives with daily.

nn

mom to , age 9, SO-JIA, diagnosed Nov 09

[Guest guest]

Hi nn-

 

is on the noney... It is like a battle and it can wear you down.  But you

are way ahead of the game in how you are dealing with it... it took me much

longer to come out of my period of denial.  So you are doing a fantastic job!

 

While I do know a couple of systemic kids who are doing well on Enbrel... and as

you know, everybody responds differently...

If I had had the option of Kineret early in Caitlin's disease, I would have

tried that before Enbrel.  Please understand that the statement comes from the

fact that Caitlin failed all 3 TNF modifiers.... but also from the fact that

there is strong research indicating that kineret can halt the disease in

systemic kids.

Here's a recent article:

http://www.medpagetoday.com/MeetingCoverage/EULAR/20818

 

That being said - it was not an easy administration.  It was a very difficult

period of time when we had to do those daily shots... I would be lying if I said

it was.  I know that if it had worked well, Caitlin would have tolerated it

much better.  Unfortunately, it didn't work for her.  But I know several

severe systemic kids who have had great success and learn to tolerate the shots

simply because they feel so much better all of the time.

 

It's such a tough decision - but I admire that you are moving on to a biologic,

whichever one you choose.  It's not easy, but by being aggressive, you are

probably saving your daughter from damage and even more problems down the

road.....

 

My best hopes to you and please know that we are always here for you!

 

Colleen - mom to Caitlin, 12, systemic

From: nn <rosannwinn@...>

Subject: frustrated

Date: Friday, August 27, 2010, 8:11 AM

 

Happy Friday everyone,

I guess I'm looking for some encouragement today. is finishing her 2nd

week of school so far this year - just started 4th grade. Things are okay, but

not great. I hate that she is struggling with JIA. As parents I guess Greg and I

are in the frustration/anger stage of this systemic JIA diagnosis. It's been

only 10 months I know, but it's hitting us that this is chronic now, that it

will stay with for God knows how many years, maybe forever. She's been on

max dose methotrexate for almost 4 months - the last three weeks injectible.

She's still on the 5mg pred with no current plan to reduce. We switched to Mobic

(from Ibuprofen) and while it's great to dose only 1x per day instead of 3-4 I'm

thiking the Mobic isn't working as well. We've seen breakthrough low grade

fevers, a slight rash again, and definitely joint pain and swelling. We have

labs on Monday - the first time we've gone a full 4 weeks between draws - much

better than when it was 2x

per week! Maybe it's that sinking feeling a few days before blood draws that's

bumming me out today. There are always more decisions, more medications to add,

and I know I should be thankful that we have choices, options. Usually our

Rheumy would try Enbrel next but of course recent research on Kineret shows it

is very effective with systemic. Has anyone here found relief from systemic on

Enbrel? We are wondering if we should try it before the Kineret, or just make

the jump to the daily shot with a medication that might have a better chance at

being effective. I apologize if I sound weak and wimpy today - just looking for

some encouragement from those who know what this is like. It's hard to put

on the bus with a low grade fever and joint aches, with all the other kiddos

(including my 5 year old) bouncing around and not having to deal with what

lives with daily.

nn

mom to , age 9, SO-JIA, diagnosed Nov 09

[Guest guest]

Yes,n,  it is hard, but, I have had to remind myself, and I have had

plenty

of days that others have had to reinstate to me that God needed someone special

to take care of his little and he picked YOU. that makes You as a

family special and strong enough to fight through it. My daughter is now 37,

Sasha, her names was in a  magazine while I was in labor with her delivery.

The

caption said   " Sasha, child of Joy

" when I woke up and the nurse asked me to put her name on the birth certificate

I opened my mouth and all of a sudden she was " SASHA, child of joy "   She was

diagnosed at the ripe old age of three!  " WOW " I thought, " what about the

joy " ? 

She was fused in her hips and knees by the age of 5. The JRA specialist said he

had never before seen such a rapid destruction and permanent damage done from

the disease in his entire career. He was at the time the President of the

Arthritis foundation for children and an aggressive practicing Doctor. When

Sasha's insurance ran out he got her placed with the Shriner's hosp for Crippled

Children here in Houston and donated his time there to take care of her til she

was to old for the children's hospital. The hospital even extended her care til

she was 19 so he could still try to help her. She has since had bi-lateral hip

and knee replacements and is still mobile.She has much difficulty but she is

truly a child of joy. These things I tell you to confirm the doubt I have had at

many times " where is God? "   You probably can relate even if you don't allow

yourself to say it out loud, no one wants to hinder anyone Else's belief in Him

but sometimes it is hard to keep the pain of a parent totally inside and

private. I was at the theater watching the movie JOHN Q with Denzel Washington

when it released and I cried through the whole movie because even though Sasha

had the best of care when she was a child the fight was still to begin. I was

fighting for her to get her needs met medically as well as other ways, living,

money, education, rehabilitation etc., when much to my surprise, sitting right

in that theater, crying my eyes out, the movie ended and the credits began with

" FOR SASHA " wow the He was " God again! " It never stops but He is always right

on

time! You are special and your child is special, do not forget that!  It takes

a

tough person to do a tough job. I am still waiting to see what Sasha is going to

be able to do for the JRA world but I am certain of one thing, she is willing

and wanting to help any one else's cause!  Today I have two perfectly healthy

happy Grandsons from Sasha, 9 and 10 years old, beautiful in every way. It is no

telling what they might accomplish in society as they grow to be men. That is

one more thing I have to remember while working with the daily struggles and

pain of helping Sasha be all she can be! This message comes to you with love

from a tired, irate, happy, loving, inquisitive, fighting Mom, just like

yourself! keep on keepin on!

" PRECISION HEADLINER & AUTO TRIM "     Sandy Hanson- @ 281-487-1919

________________________________

From: nn <rosannwinn@...>

Sent: Fri, August 27, 2010 10:11:14 AM

Subject: frustrated

 

Happy Friday everyone,

I guess I'm looking for some encouragement today. is finishing her 2nd

week of school so far this year - just started 4th grade. Things are okay, but

not great. I hate that she is struggling with JIA. As parents I guess Greg and I

are in the frustration/anger stage of this systemic JIA diagnosis. It's been

only 10 months I know, but it's hitting us that this is chronic now, that it

will stay with for God knows how many years, maybe forever. She's been on

max dose methotrexate for almost 4 months - the last three weeks injectible.

She's still on the 5mg pred with no current plan to reduce. We switched to Mobic

(from Ibuprofen) and while it's great to dose only 1x per day instead of 3-4 I'm

thiking the Mobic isn't working as well. We've seen breakthrough low grade

fevers, a slight rash again, and definitely joint pain and swelling. We have

labs on Monday - the first time we've gone a full 4 weeks between draws - much

better than when it was 2x per week! Maybe it's that sinking feeling a few days

before blood draws that's bumming me out today. There are always more decisions,

more medications to add, and I know I should be thankful that we have choices,

options. Usually our Rheumy would try Enbrel next but of course recent research

on Kineret shows it is very effective with systemic. Has anyone here found

relief from systemic on Enbrel? We are wondering if we should try it before the

Kineret, or just make the jump to the daily shot with a medication that might

have a better chance at being effective. I apologize if I sound weak and wimpy

today - just looking for some encouragement from those who know what this is

like. It's hard to put on the bus with a low grade fever and joint aches,

with all the other kiddos (including my 5 year old) bouncing around and not

having to deal with what lives with daily.

nn

mom to , age 9, SO-JIA, diagnosed Nov 09

[Guest guest]

Hi ,

Just saw your post. My son josh is now 5 (emma's brother) and has been sick for

5 years with a constant sinus infection, ear tubes twice and tonsilectomy to

clear up his chronic congestion. I had him to countless allergist and all his

tests were negative. he was on alimentum formula as an infant due to blood in

his stool. when he turned one he wnet straight to soy milk. anyway he had a

constnat runny nose that would turn into a sinus infection. he would briefly

clear and then boom again the nose, croup , cough etc.

finally this year an ent wanted to drill holes in his sinuses to clear him I

freaked!!

took him to an alternative md who took blood tests that conventional md do not

say is valid...anyway his antibodies were off the chart for wheat, egg, soy and

milk. took him off those foods in february and whala no runny nose!!!!!!!!! he

did get an ear infection over the summer when he swam alot in camp and my

parents fed him the wrong food over the weekend. so too coincidental that he did

get so sick when he ate food with soy and milk in it!!!

just my two cents!

good luck. just feel strongly about finding out what works and cnat believe he

suffered for 5 eyars and monthly antibiotics for nothing. he is on singular,

flonase and zyrtec for his allergies too. hoping to wean him off one day soon

too. i know it is the food too and not the meds helping him as well.

aimee

emma's mommy waiting for her 9th cast shriners greenville

>

>

> Hi all,

> Just feeling frustrated this morning.

> Thought I would share with people who understand..

> Kaitlyns nose is still running, if you all remember, she was cabcelled for her

1st cast back on the 10th...for being sick..fever ect.

> She hasn't ran a fever in almost two weeks, however her nose is still runny.

> I'm doing all I know to do..to stop it.

> Breathing treatments (in hopes of clearing any possible congestion) and saline

drops.

> Maybe it's allergies??? I'm just really nervous about her new cast date..on

the 2nd. I reallly don't want them to cancel again!

> Just seems like a lot has stood in our way for getting her casted.

> I mean we've known about this since May. Ugh...I know it's getting worse..you

can see little changes.

> Any prayers and good thoughts for Kaity are welcomed

> Thx for letting me vent

> -mommy to Kaitlyn (13months) 1st cast Sep 2nd (fingers crossed)

> Sent from my iPod

>

[Guest guest]

For our exp, Timmy has been casted, xrayed, and then as long as everything is okay, we are on our own. We go 3 months in between castings, but Timmy is 33 months. I know that some little ones go 2 months with castings. Timmy has sores on his hips, but nothing terrible. They have told us to just see how he is doing and take it day by day. Hope this helps.

From: shannonclune <shannonclune@...>Subject: frustratedinfantile scoliosis treatment Date: Wednesday, September 29, 2010, 10:34 PM

Hi!I was just wondering what the typical protocol was for casting. I feel like we are being a little neglected. He was casted in mid July (first cast) and he has not been checked by his orthopedic doctor since then. The doctor wanted to have xrays in September but when I called about it his assistant just said to wait until his October 14th appointment. I just hope everything is ok. I have taken him to his pediatrician but this is his first patient with a cast like this so I feel like I am on my own with this one. He has been having sores on his hips and I just want to make sure he has not outgrown his cast, if that is possible. I appreciate any input you all may have!Thanks, Clunen's mom, 1st cast

[Guest guest]

I think younger kids usually go 3 months in a cast and older (my son is 3) go 4 months. We used to have to always put cream on my son's hips- to keep rubbing at bay. We use baby calendula cream, but others use Aquaphor- whatever works for your child's skin. There should never be pain in a cast, but tight is actually good for correction- "anchored" on the hips. Hope this helps! Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast)From: shannonclune <shannonclune@...>infantile scoliosis treatment Sent: Wed, September 29, 2010 3:34:07 PMSubject: frustrated

Hi!

I was just wondering what the typical protocol was for casting. I feel like we are being a little neglected. He was casted in mid July (first cast) and he has not been checked by his orthopedic doctor since then. The doctor wanted to have xrays in September but when I called about it his assistant just said to wait until his October 14th appointment. I just hope everything is ok. I have taken him to his pediatrician but this is his first patient with a cast like this so I feel like I am on my own with this one. He has been having sores on his hips and I just want to make sure he has not outgrown his cast, if that is possible. I appreciate any input you all may have!

Thanks,

Clune

n's mom, 1st cast