Need Advice

[Guest guest]

My pediatrician also said to wait until the 9 month appointment and they would reevaluate then but I wasn't satisfied with his head shape at his 6 month appointment and didn't want to wait 3 more months so he recommended I go to a neurosurgeon for a second opinion. You could do that or go directly to a cranial technologies, starband or hanger place and get your free evaluation. I actually went to cranial technologies and after seeing the numbers of asymmetry in his head made my own decision to get the band without seeking out a specialist. I had actually seen a neurosurgeon when he was 4 months old and she had said then to reposition and if I wasn't happy in 2 months that she would see him again and if I wasn't happy she would recommend me to CT so I felt comfortable in the fact that she would probably have just sent me there anyways. I did send the neurosurgeon the results of my consult in case I decide to follow up with her at a

later date. When CT sent my pediatrician the results of the consult which included pictures, measurements and a statement saying my son was a good candidate, my pediatrician wrote the prescription that day. Pediatricians are great but are not specialists. My son is 7.5 months old and has been in his band for 4 days. It takes about 2 to 3 weeks to get the consult, casting and then finally get the band in and fitted. You could even go to CT, starband or hanger and get their evalution since it is free and bring that to a specialist and see what they think as well. It probably will only take a week to get into one of the above but may take longer to get in to see a specialist so it would be something you could get over with while waiting for a specialist appointment. Hope this helps. Sybil michelle710

<michelle710@...> wrote: My sons doctor keeps telling me that there is nothing wrong with his head shape, and that it will round out....Im very concerned...when I look in the mirror I can see one of his cheeks is much fuller than the other. His PT also said that his ears are not symmetrical. Since my pedi is not helping me what other options do I have? I dont even know where to start....can anyone offer advice??

Never miss a thing. Make your homepage.

[Guest guest]

You could go for an evaluation at a banding location for their opinion. Or maybe another dr for a second opinion. Where are you located? Maybe we have someone in your area that has a doctor that is plagio knowledgable. My dr thought my daughter had plagio but was not real familiar with it. So he sent us to a pediatric cranio plastic surgeon for an opinion. I hope this helps.

Angie

Need advice

My sons doctor keeps telling me that there is nothing wrong with his head shape, and that it will round out....Im very concerned...when I look in the mirror I can see one of his cheeks is much fuller than the other. His PT also said that his ears are not symmetrical. Since my pedi is not helping me what other options do I have? I dont even know where to start....can anyone offer advice??

[Guest guest]

Your story is all to familiar... alot of parents have to search and fight for diagnosis and treatment.

If your ped is not helpful - get a referral (if needed) or just go and see a Craniofacial dr. SOme people see Neurosurgeons.

If you live near a Cranial Tech they do free evaluations to see if a band is needed and would help. You can also take that info to your ped. If the measurements show plagio your ped may write the script after seeing that info.

We were also told it would round out and not to worry. My gut was screaming that it wasn't ok to just wait and see. I wanted to do everything I could to help my daughter while I could. I knew if we waited too long then it would be too late to treat, and that was not ok with me.

Follow your gut - look for the answers... if the drs aren't listening then find one who will.

:-D

Jen and Luli - 27 months

Left tort - Right Plagio - Hanger Band Grad - CA

http://www.babiesonline.com/babies/j/jens5th/

Need advice

My sons doctor keeps telling me that there is nothing wrong with his

head shape, and that it will round out....Im very concerned...when I

look in the mirror I can see one of his cheeks is much fuller than the

other. His PT also said that his ears are not symmetrical. Since my

pedi is not helping me what other options do I have? I dont even know

where to start....can anyone offer advice??

Planning your summer road trip? Check out AOL Travel Guides.

[Guest guest]

Hi ,

This doesn't offer up much advice, but I just wanted to let you know

that we are in the same boat. I see assymetry in my baby's cheeks &

she also has a a bit of tort & her pediatrician yesterday offered up

no help or concern at all! Needless to say we are switching

pediatrician's & seeking a 2nd opinion

& Kaylie 4 1/2 months

>

> My sons doctor keeps telling me that there is nothing wrong with his

> head shape, and that it will round out....Im very concerned...when I

> look in the mirror I can see one of his cheeks is much fuller than

the

> other. His PT also said that his ears are not symmetrical. Since

my

> pedi is not helping me what other options do I have? I dont even

know

> where to start....can anyone offer advice??

>

[Guest guest]

I would go get another opinon. My first son Kaden is three now they

told me the same thing that it will round out itself. Well he still

has the flat spot and has a cross bite due to it. My son Connor is

five months and I told his ped. about it and they said it will

usually fix it self. He started to listen when his face was noticable

at three months. He has received his helmet and i will hopefully see

inprovement soon. I wish I was more pushy with my first son. Also I

would check into sacral cranial therapy it has done wonders.

> >

> > You could go for an evaluation at a banding location for their

> opinion. Or maybe another dr for a second opinion. Where are you

> located? Maybe we have someone in your area that has a doctor that

> is plagio knowledgable. My dr thought my daughter had plagio but

was

> not real familiar with it. So he sent us to a pediatric cranio

> plastic surgeon for an opinion. I hope this helps.

> >

> > Angie

> > Need advice

> >

> >

> > My sons doctor keeps telling me that there is nothing wrong

with

> his

> > head shape, and that it will round out....Im very

> concerned...when I

> > look in the mirror I can see one of his cheeks is much fuller

> than the

> > other. His PT also said that his ears are not symmetrical.

Since

> my

> > pedi is not helping me what other options do I have? I dont

even

> know

> > where to start....can anyone offer advice??

> >

>

[Guest guest]

We are all here because we need someone else to talk to. I think she would be

grateful to

hear from others, I know I was!

>

> Hi everyone,

>

> I need your wisdom on something. I participate in a non-profit organization as

a

volunteer in a leadership position. When reviewing a newsletter this month, I

read a story

on the front page that could have been my own.

>

> The Mom was talking about being grateful for our children and the things we go

through. She began describing what she had endured over the last few weeks. She

talked

about taking her son to a specialist for a flat spot on his head. She felt they

were shuffled

through the system and sought a 2nd opinion. At the 2nd specialist, she was

given the it

will round out on its' own speech and they have decided not to seek treatment.

>

> I'm not sure in my position that it is entirely appropriate for me to contact

her to tell my

story, but we were given that same speech by a " specialist " when Trentyn was 4

months

old and we almost missed the window of treatment, not to mention that he will

not achieve

100% correction.

>

> What do you'll think? Is it entirely inappropriate for me to email this Mom?

To offer

support, advice, anything??? I would really love everyone's advice. Thanks in

advance!

>

> Jen- TX

> Trentyn- 16 mo. DocBand 06/12/03 & 09/17/03

>

[Guest guest]

I agree, I know that I would want advice from someone if I was in

her situation. I really believe that if my son would have just been

left to let his head round out it would have really been a problem

> >

> > Hi everyone,

> >

> > I need your wisdom on something. I participate in a non-profit

organization as a

> volunteer in a leadership position. When reviewing a newsletter

this month, I read a story

> on the front page that could have been my own.

> >

> > The Mom was talking about being grateful for our children and

the things we go

> through. She began describing what she had endured over the last

few weeks. She talked

> about taking her son to a specialist for a flat spot on his head.

She felt they were shuffled

> through the system and sought a 2nd opinion. At the 2nd

specialist, she was given the it

> will round out on its' own speech and they have decided not to

seek treatment.

> >

> > I'm not sure in my position that it is entirely appropriate for

me to contact her to tell my

> story, but we were given that same speech by a " specialist " when

Trentyn was 4 months

> old and we almost missed the window of treatment, not to mention

that he will not achieve

> 100% correction.

> >

> > What do you'll think? Is it entirely inappropriate for me to

email this Mom? To offer

> support, advice, anything??? I would really love everyone's

advice. Thanks in advance!

> >

> > Jen- TX

> > Trentyn- 16 mo. DocBand 06/12/03 & 09/17/03

> >

>

[Guest guest]

I also think you should send her a message telling her about your

story. Unfortunately these babies don't come with a manual or a list

of " what could happen " so I'm sure any help would be appreciated. I

know I would appreciate the feedback because not all situations play

out like we would hope so.

Tammy

Mother to Christian (8mos)

> > >

> > > Hi everyone,

> > >

> > > I need your wisdom on something. I participate in a non-profit

> organization as a

> > volunteer in a leadership position. When reviewing a newsletter

> this month, I read a story

> > on the front page that could have been my own.

> > >

> > > The Mom was talking about being grateful for our children and

> the things we go

> > through. She began describing what she had endured over the last

> few weeks. She talked

> > about taking her son to a specialist for a flat spot on his head.

> She felt they were shuffled

> > through the system and sought a 2nd opinion. At the 2nd

> specialist, she was given the it

> > will round out on its' own speech and they have decided not to

> seek treatment.

> > >

> > > I'm not sure in my position that it is entirely appropriate for

> me to contact her to tell my

> > story, but we were given that same speech by a " specialist " when

> Trentyn was 4 months

> > old and we almost missed the window of treatment, not to mention

> that he will not achieve

> > 100% correction.

> > >

> > > What do you'll think? Is it entirely inappropriate for me to

> email this Mom? To offer

> > support, advice, anything??? I would really love everyone's

> advice. Thanks in advance!

> > >

> > > Jen- TX

> > > Trentyn- 16 mo. DocBand 06/12/03 & 09/17/03

> > >

> >

>

[Guest guest]

Dear Jen,

I would also go ahead and contact her, as I think advice and info

from parents who've experienced identical problems are as valuable as

the competent specialist's opinion. Not to mention the incompetent or

nonchalant specialist's one, which is obviously the case in the front

page story you mention. If I were that mom, I would have loved to

have someone like you, who'd call with advice and support and real

caring.

With best wishes

Ivanka

(mother to Klara, just starting exams and consultations for treatment

of plagio)

> > > >

> > > > Hi everyone,

> > > >

> > > > I need your wisdom on something. I participate in a non-

profit

> > organization as a

> > > volunteer in a leadership position. When reviewing a newsletter

> > this month, I read a story

> > > on the front page that could have been my own.

> > > >

> > > > The Mom was talking about being grateful for our children and

> > the things we go

> > > through. She began describing what she had endured over the

last

> > few weeks. She talked

> > > about taking her son to a specialist for a flat spot on his

head.

> > She felt they were shuffled

> > > through the system and sought a 2nd opinion. At the 2nd

> > specialist, she was given the it

> > > will round out on its' own speech and they have decided not to

> > seek treatment.

> > > >

> > > > I'm not sure in my position that it is entirely appropriate

for

> > me to contact her to tell my

> > > story, but we were given that same speech by a " specialist "

when

> > Trentyn was 4 months

> > > old and we almost missed the window of treatment, not to

mention

> > that he will not achieve

> > > 100% correction.

> > > >

> > > > What do you'll think? Is it entirely inappropriate for me to

> > email this Mom? To offer

> > > support, advice, anything??? I would really love everyone's

> > advice. Thanks in advance!

> > > >

> > > > Jen- TX

> > > > Trentyn- 16 mo. DocBand 06/12/03 & 09/17/03

> > > >

> > >

> >

>

[Guest guest]

Hi Lindsey:Sounds like your little one has been through a lot.... I hope that all her other issues are resolved.I'm sorry your're seeing some changes.. I just wanted to say that you should probably call any specialist you saw (if you did) prior to doing the helmet (neurosurgeon, plastic surgeon, crainalfacial expert, etc.) first and tell them what you are seeing -- then your doctor (and just call your doctor first, of course, if you didn't see a specialist beforehand). I know it's tempting, but don't put the old helmet on your child -- especially if it has been several weeks. Have you taken any pictures recently? You might want to compare right after the helmet came off to right now. -- you might find there really hasn't been as much change as it looks. A doctor can help you determine what, if anything, has changed.Take care.mom to Quinn, born 11/99 - DOCband grad 10/00 f

or scaphocephalic head shape>------- Original Message ------->From : linnytoth[mailto:linnytoth@...]>Sent : 7/23/2008 11:51:07 PM>To : Plagiocephaly >Cc : >Subject : RE: need advice>>My name is Lindsey and I have an eleven month old with plagio. She was fitted for a helmet back in March and only wore the helmet for about four months until the doctor said that she no longer had to wear it. However, I have noticed that her head seems to be "going back" or growing in the wrong direction again. I have also noticed a facial distortion and her right eye is seemingly "lazy" and a bit droopy. She has not worn the helmet now for weeks, should I try putting it back on her? She was a mild plagio case and the doctor was very pleased with the results of the helmet but I just d

on't want this to get worse. All those doctor visits and endless helmet cleanings would be for nothing. Oh yes, and I forgot to mention that she has had countless problems with ear infections and colds and she even had to have an MRI to get a better look into her cronic constipation issues. I am worried about the long-term effects of this condition if we do not have her re-evaluated. Any advice you may have to shed some light on my situation would be much appreciated. ------------------------------------For more plagio info

[Guest guest]

Hi Lindsey,

I am sorry to hear what you little girl is going through. Definitely don't put the helmet back on. An ill fitting helmet can cause more harm than good. And do call your doc/specialists as was reccomended. If you haven't seen a cranofacial specialist or neurosurgeon, it's always worth a visit for peace of mind if nothing else.

Good Luck and keep us posted.

Audra

need advice

My name is Lindsey and I have an eleven month old with plagio. She was fitted for a helmet back in March and only wore the helmet for about four months until the doctor said that she no longer had to wear it. However, I have noticed that her head seems to be "going back" or growing in the wrong direction again. I have also noticed a facial distortion and her right eye is seemingly "lazy" and a bit droopy. She has not worn the helmet now for weeks, should I try putting it back on her? She was a mild plagio case and the doctor was very pleased with the results of the helmet but I just don't want this to get worse. All those doctor visits and endless helmet cleanings would be for nothing. Oh yes, and I forgot to mention that she has had countless problems with ear infections and colds and she even had to have an MRI to get a better look into her cronic constipation issues. I am worried about the

long-term effects of this condition if we do not have her re-evaluated. Any advice you may have to shed some light on my situation would be much appreciated.

[Guest guest]

Hi Lindsey,

You shouldn't put the helmet on unless you visit the ortho & /or doctor

to see if it fits properly and would help. Usually kids have more or

less outgrown their helmet by the time they graduate. Also you would

want a professional to assess her head to see if she has really

regressed before decided to start treating her yourself. Sometimes we

just get used to looking for problems, and can see things that aren't

really there (becuase we tend to become a little paranoid).

Please check back with your doctor & /or ortho and let us know what

they say.

-christine

sydney 2.5 yrs starband grad

>

> My name is Lindsey and I have an eleven month old with plagio. She was

> fitted for a helmet back in March and only wore the helmet for about

> four months until the doctor said that she no longer had to wear it.

> However, I have noticed that her head seems to be " going back " or

> growing in the wrong direction again. I have also noticed a facial

> distortion and her right eye is seemingly " lazy " and a bit droopy. She

> has not worn the helmet now for weeks, should I try putting it back on

> her? She was a mild plagio case and the doctor was very pleased with

> the results of the helmet but I just don't want this to get worse. All

> those doctor visits and endless helmet cleanings would be for nothing.

> Oh yes, and I forgot to mention that she has had countless problems

> with ear infections and colds and she even had to have an MRI to get a

> better look into her cronic constipation issues. I am worried about

> the long-term effects of this condition if we do not have her re-

> evaluated. Any advice you may have to shed some light on my situation

> would be much appreciated.

>

[Guest guest]

I would go to your doc and have the miralax changed to every 5 or 6 days since

it is a laxitive. Or ask him if you can also take a daily stool softner.

[ ] need advice

Many of the meds I take cause constipation. Also the high dose of

calcium causes it, too so I take supplemental magnesium to balance

that. Right now take 3000mg calcium each day and only 1200 magnesium.

Also am trying to each a more high fiber diet so use Miralax every 10

days or so. I am always thirsty from being on a diuretic so do drink

plenty of clear fluids. Despite this, my GI slows way down and I have

to strain to have a BM. It is very painful to do that though since I

have internal hemorroids.

Is there anything else I can do or take to keep my system running

properly? I appreciate any feedback.

thanks,

Debbie L

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[Guest guest]

Colace.

****~**** Kami ****~****

[ ] need advice

Many of the meds I take cause constipation. Also the high dose of

calcium causes it, too so I take supplemental magnesium to balance

that. Right now take 3000mg calcium each day and only 1200 magnesium.

Also am trying to each a more high fiber diet so use Miralax every 10

days or so. I am always thirsty from being on a diuretic so do drink

plenty of clear fluids. Despite this, my GI slows way down and I have

to strain to have a BM. It is very painful to do that though since I

have internal hemorroids.

Is there anything else I can do or take to keep my system running

properly? I appreciate any feedback.

thanks,

Debbie L

[Guest guest]

Take generic stool softeners daily with a full glass of liquid.

It takes 2-3 days after first dose but is a blessing after that.

Raniolo

From: ~ Kami ~ <kamilleon@...>

Subject: Re: [ ] need advice

Date: Tuesday, September 30, 2008, 9:27 PM

Colace.

****~**** Kami ****~****

[ ] need advice

Many of the meds I take cause constipation. Also the high dose of

calcium causes it, too so I take supplemental magnesium to balance

that. Right now take 3000mg calcium each day and only 1200 magnesium.

Also am trying to each a more high fiber diet so use Miralax every 10

days or so. I am always thirsty from being on a diuretic so do drink

plenty of clear fluids. Despite this, my GI slows way down and I have

to strain to have a BM. It is very painful to do that though since I

have internal hemorroids.

Is there anything else I can do or take to keep my system running

properly? I appreciate any feedback.

thanks,

Debbie L

[Guest guest]

Angie,

I have insomnia really bad. The pain, along with the meds tend to keep

me up. I do have Ambien, and it does help. I don't take it all the

time, only when I really need it. Tawny

>

> Hi guys

>

> I could use some help I told you guys a couple of weeks ago about the

> fatique and achiness. Well this is still going on. but I am also

> having trouble sleeping at night I am having dreams of me progressing

> to the point I cann't hardly move. Is this normal to be having dreams

> like this or should I talk to the doctor. Also the doctor said he

> would up my medicine anytime I told him I need it I am wondering if

> I should do that to help with the pain adn everything. Thanks for any

> help I have to go now talk with you later

>

> Thanks

> Angie

>

[Guest guest]

Hi Debbie

Prunes (or prune juice) and/or kiwifruit (or kiwifruit juice) are very good.

Also try switching to a high fibre cereal and bread (>10% fibre cereal and

>5% wholegrain bread).

If this isn't enough, the best laxative (believe me - I've tried them all)

is colloxyl with senna (not intended to be used daily however...) For

emergency use, have a few Fleet glycerin suppositories on hand!

Good luck

[Guest guest]

Angie,

Are you taking prednisone? If I take more than 10mg it does that to

me.

I hope things get better soon.

Shirley

>

> >

> > Hi guys

> >

> > I could use some help I told you guys a couple of weeks ago

about the

> > fatique and achiness. Well this is still going on. but I am also

> > having trouble sleeping at night I am having dreams of me

progressing

> > to the point I cann't hardly move. Is this normal to be having

dreams

> > like this or should I talk to the doctor. Also the doctor said he

> > would up my medicine anytime I told him I need it I am wondering

if

> > I should do that to help with the pain adn everything. Thanks

for any

> > help I have to go now talk with you later

> >

> > Thanks

> > Angie

> >

>

[Guest guest]

Hi Debbie

I'm like you with my meds and constipation. I take a natural laxative

with stool softner - just a laxative is no use - it's a herb called

senna.

I also found out that taking high doses of Vitamin C can give a similar

affect - and I was already taking some anyway. Depending on your

personal situation upwards of 2000mg will probably start to give you

some noticable help.

Best of luck!

>

> Many of the meds I take cause constipation. Also the high dose of

> calcium causes it, too so I take supplemental magnesium to balance

> that. Right now take 3000mg calcium each day and only 1200 magnesium.

>

> Also am trying to each a more high fiber diet so use Miralax every 10

> days or so. I am always thirsty from being on a diuretic so do drink

> plenty of clear fluids. Despite this, my GI slows way down and I have

> to strain to have a BM. It is very painful to do that though since I

> have internal hemorroids.

>

> Is there anything else I can do or take to keep my system running

> properly? I appreciate any feedback.

>

> thanks,

>

> Debbie L

>

[Guest guest]

Hi Debbie - I understand your discomfort. The pain meds are what does

it to me. I find that if I eat things that are higher in fiber, I

don't have as difficult of a time. Grapes have worked really well

recently and as while I am not a big grape eater, three or four grapes

at a time is all it takes. Orange juice used to be another good one.

I have found that I just try to pay attention to what I eat and the

end results so that I know when to repeat a particular food. I bought

some Miralax as well, but I haven't used it as I am afraid of becoming

laxative dependent which would make things ever worse.

You might want to check with your Rheumy, too, about the additional

magnesium you are taking. I can't remember off the top of my head, but

I read where magnesium can affect the effectiveness of a certain RA

medication.

I also might suggest you get in touch with a Gastro doctor. If you

have internal hemorrhoids that are painful, it is possible that your

GI problems could be related to stress. Knowing that elimination is

going to be painful, you could be unconsciously holding back which

would in turn increase the solidity of the end result as the longer it

stays in the large intestine, the more liquid is absorbed back into

the body. Hope this helps.............Doreen

>

> Many of the meds I take cause constipation. Also the high dose of

> calcium causes it, too so I take supplemental magnesium to balance

> that. Right now take 3000mg calcium each day and only 1200

> magnesium.

>

> Also am trying to each a more high fiber diet so use Miralax every

> 10 days or so. I am always thirsty from being on a diuretic so do

> drink plenty of clear fluids. Despite this, my GI slows way down

> and I have to strain to have a BM. It is very painful to do that

> though since I have internal hemorroids.

>

> Is there anything else I can do or take to keep my system running

> properly? I appreciate any feedback.

>

> thanks,

>

> Debbie L

>

[Guest guest]

Hi...

I have had the same problem. My soultion was a strict sleep schedule, same time

every night, no caffine drinks six hours before sleep, and a very mild sleep to

help me dall asleep (not know me out) and that seems to work. Your body will

evenutally learn to adjust to the clock once you have set it. Hope this helps.

Stan

-------------- Original message --------------

From: " tdianaok " <tdianaok@...>

Angie,

I have insomnia really bad. The pain, along with the meds tend to keep

me up. I do have Ambien, and it does help. I don't take it all the

time, only when I really need it. Tawny

>

> Hi guys

>

> I could use some help I told you guys a couple of weeks ago about the

> fatique and achiness. Well this is still going on. but I am also

> having trouble sleeping at night I am having dreams of me progressing

> to the point I cann't hardly move. Is this normal to be having dreams

> like this or should I talk to the doctor. Also the doctor said he

> would up my medicine anytime I told him I need it I am wondering if

> I should do that to help with the pain adn everything. Thanks for any

> help I have to go now talk with you later

>

> Thanks

> Angie

>

[Guest guest]

I spoke to my pharmacist about this very subject. Senokot-S is approved

to take with medications. Regular Senokot isn't. Fiber-laiden cereal

isn't my bag so I am gnawing on Fiber Choice plus Calcium chewable

tablets.

Lest I mislead you...the Senokot-S will help you 'quickly' as in take

it in the morning. I was able to quit taking the Senokot-S and am

trying the Fiber Choice to see if that helps.

I also have some nasty 'roids so I feel your pain.

Dalanne

>

> Many of the meds I take cause constipation. Also the high dose of

> calcium causes it, too so I take supplemental magnesium to balance

> that. Right now take 3000mg calcium each day and only 1200 magnesium.

>

> Also am trying to each a more high fiber diet so use Miralax every 10

> days or so. I am always thirsty from being on a diuretic so do drink

> plenty of clear fluids. Despite this, my GI slows way down and I have

> to strain to have a BM. It is very painful to do that though since I

> have internal hemorroids.

>

> Is there anything else I can do or take to keep my system running

> properly? I appreciate any feedback.

>

> thanks,

>

> Debbie L

>

[Guest guest]

Hi Bonnie,

I am so sorry you are going thru all of this.

I do not know anything about reMacade. However, I think the best thing for you

to do is contact your doc first thing Monday. Please keep us posted!

Take care,

in SC

Sent from my iPhone

On Oct 4, 2009, at 11:28 AM, " tiredtaz " <tiredtaz@...> wrote:

I've got a problem... or at least I think I do...

I had my first Remicade infusion on Wednesday 9/30.... That night I ended up in

the emergency room bent over in pain... Turned out to be Kidney stones... I

passed the ones on my right side and I'm still attempting to pass the ones on

the left...

Anyway, I woke up yesterday very weak but pushed myself to shower and continue

to move as I had promised my 13 yr old daughter to take her shopping. I did

however call in for re-enforcements by asking my mother to drive us to the

mall.. We made a fairly quick trip and I took a two hour nap when we got home...

(I rarely take naps).

Last night, I slept better then I had in months and woke up refreshed.

However, I quickly noticed that I can hardly move without my heart beat racing

and becoming out of breath very quickly. Even at rest after moving from one

chair to the next, I feel as if I just ran a tri-athalon!

I'm very afraid as this is very unusual and I don't know what to do...

Please send advice...

Bonnie

[Guest guest]

Hi Bonnie,

I would put a call in to the rheumy NOW, if I really felt it was serious I would

go to the ER, what could it hurt if you have insurance.

I did Remicade for a year, didn't agree with me for other reasons and didn't

really help much. I've also been down the kidney stone lane and boy, that's

something, you don't know how to spell pain till you've had a stone.

Just my 2 cents,

in PA

[ ] Need advice

I've got a problem... or at least I think I do...

I had my first Remicade infusion on Wednesday 9/30.... That night I ended up

in the emergency room bent over in pain... Turned out to be Kidney stones... I

passed the ones on my right side and I'm still attempting to pass the ones on

the left...

Anyway, I woke up yesterday very weak but pushed myself to shower and continue

to move as I had promised my 13 yr old daughter to take her shopping. I did

however call in for re-enforcements by asking my mother to drive us to the

mall.. We made a fairly quick trip and I took a two hour nap when we got home...

(I rarely take naps).

Last night, I slept better then I had in months and woke up refreshed.

However, I quickly noticed that I can hardly move without my heart beat racing

and becoming out of breath very quickly. Even at rest after moving from one

chair to the next, I feel as if I just ran a tri-athalon!

I'm very afraid as this is very unusual and I don't know what to do...

Please send advice...

Bonnie

[Guest guest]

Thanks for the replies... When my husband came home he felt that it would be a

good idea to get checked out, so we went to the ER... Six hours later and what

felt like a million tests, they couldn't find anything other then elevated white

blood cells... My heart rate was at a pretty constant 105 at rest and the

second I tried to move it would shoot up to 130... They seemed concerned about

this at first, and then decided that the tests didn't come back with anything so

I must be fine. The Doctor says its probably due to lack of exercise. A--hole!

I get around plenty and I try very hard to stay as active as the pain allows and

most of the time I walk through the pain too... I really can't stand some

people!

Needless to say, I feel a little bit better this morning, I'm not nearly as out

of breath as I was. So, I guess its business as usual. And once again, no

answers for the weary!

Thanks again for the support..

Bonnie

>

> Hi Bonnie,

>

> I would put a call in to the rheumy NOW, if I really felt it was serious I

would go to the ER, what could it hurt if you have insurance.

>

> I did Remicade for a year, didn't agree with me for other reasons and didn't

really help much. I've also been down the kidney stone lane and boy, that's

something, you don't know how to spell pain till you've had a stone.

>

> Just my 2 cents,

>

> in PA

> [ ] Need advice

>

>

> I've got a problem... or at least I think I do...

> I had my first Remicade infusion on Wednesday 9/30.... That night I ended up

in the emergency room bent over in pain... Turned out to be Kidney stones... I

passed the ones on my right side and I'm still attempting to pass the ones on

the left...

> Anyway, I woke up yesterday very weak but pushed myself to shower and

continue to move as I had promised my 13 yr old daughter to take her shopping. I

did however call in for re-enforcements by asking my mother to drive us to the

mall.. We made a fairly quick trip and I took a two hour nap when we got home...

(I rarely take naps).

> Last night, I slept better then I had in months and woke up refreshed.

> However, I quickly noticed that I can hardly move without my heart beat

racing and becoming out of breath very quickly. Even at rest after moving from

one chair to the next, I feel as if I just ran a tri-athalon!

> I'm very afraid as this is very unusual and I don't know what to do...

> Please send advice...

> Bonnie

>

>

>

>

>

>