Worried...

[Guest guest]

I would call your doctor again. Trish

tierneystutz <tierneystutz@...> wrote:

Hi, my name is Tierney and my son Jack is 14 months old. He was

diagnosed with when he was 9 months old, after having 105

degree fevers at months 4, 5, 6, 7, 8, and 9. When he turned 12

months, the ID doctor (that our ped referred us to at Children's

Memorial Hosptial in Chicago) prescribed Orapred to be given at the

onset of fever...just like so many of you. Well, we gave it to him

at the fever that came when he turned 13 months. And then, he got

no fever for 75 days ( I so thought we were done!) Well, at day

75...which was a week and a half ago, he got a fever of 106. I was

certain it must not be periodic fever, because there was

nothing " periodic " about it, right? Well I brought him to my ped,

who was amazed how he was still able to wave and interact a little

bit, despite this incredibly high fever. She didn't see any

warnings of other things (meningitis, uti, etc.), so she said to go

ahead and give him the orapred. So, we did. That was last friday

(8 days ago), and the fever went right away, but he still didn't

seem " himself " , he was fussy, drooling a ton (no swollen tonsils

ever). Then today, he has a high fever again. I just feel so

uncertain as to what to make of all of this. I thought some of the

expertise from this board could shed some light. Any thoughts?

Thank you so much, I've been a lurker for ages!

Tierney

mother of colson 6, caroline 2, and jack 1 ()

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

[Guest guest]

After a year of trying everything else, we finally started my 6 year old on

Prednisone last month. It takes the fever away quickly, but she is still

symptomatic for 2-3 days, which is definitely better, BUT, she is now getting

episodes every 7 days...this has gone on for the last 4 weeks. We are going back

to the ID Doc at Vanderbilt next week.

Re: worried...

I would call your doctor again. Trish

tierneystutz <tierneystutz@...> wrote:

Hi, my name is Tierney and my son Jack is 14 months old. He was

diagnosed with when he was 9 months old, after having 105

degree fevers at months 4, 5, 6, 7, 8, and 9. When he turned 12

months, the ID doctor (that our ped referred us to at Children's

Memorial Hosptial in Chicago) prescribed Orapred to be given at the

onset of fever...just like so many of you. Well, we gave it to him

at the fever that came when he turned 13 months. And then, he got

no fever for 75 days ( I so thought we were done!) Well, at day

75...which was a week and a half ago, he got a fever of 106. I was

certain it must not be periodic fever, because there was

nothing " periodic " about it, right? Well I brought him to my ped,

who was amazed how he was still able to wave and interact a little

bit, despite this incredibly high fever. She didn't see any

warnings of other things (meningitis, uti, etc.), so she said to go

ahead and give him the orapred. So, we did. That was last friday

(8 days ago), and the fever went right away, but he still didn't

seem " himself " , he was fussy, drooling a ton (no swollen tonsils

ever). Then today, he has a high fever again. I just feel so

uncertain as to what to make of all of this. I thought some of the

expertise from this board could shed some light. Any thoughts?

Thank you so much, I've been a lurker for ages!

Tierney

mother of colson 6, caroline 2, and jack 1 ()

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

[Guest guest]

Have you tried putting her on cimetidine? Azzie mom to Kianna 9

From: [mailto: ] On Behalf Of

Ssearcy69@...

Sent: Saturday, April 21, 2007 7:28 PM

Subject: Re: worried...

After a year of trying everything else, we finally started my 6 year old on

Prednisone last month. It takes the fever away quickly, but she is still

symptomatic for 2-3 days, which is definitely better, BUT, she is now

getting episodes every 7 days...this has gone on for the last 4 weeks. We

are going back to the ID Doc at Vanderbilt next week.

Re: worried...

I would call your doctor again. Trish

tierneystutz <tierneystutz@... <mailto:tierneystutz%40> >

wrote:

Hi, my name is Tierney and my son Jack is 14 months old. He was

diagnosed with when he was 9 months old, after having 105

degree fevers at months 4, 5, 6, 7, 8, and 9. When he turned 12

months, the ID doctor (that our ped referred us to at Children's

Memorial Hosptial in Chicago) prescribed Orapred to be given at the

onset of fever...just like so many of you. Well, we gave it to him

at the fever that came when he turned 13 months. And then, he got

no fever for 75 days ( I so thought we were done!) Well, at day

75...which was a week and a half ago, he got a fever of 106. I was

certain it must not be periodic fever, because there was

nothing " periodic " about it, right? Well I brought him to my ped,

who was amazed how he was still able to wave and interact a little

bit, despite this incredibly high fever. She didn't see any

warnings of other things (meningitis, uti, etc.), so she said to go

ahead and give him the orapred. So, we did. That was last friday

(8 days ago), and the fever went right away, but he still didn't

seem " himself " , he was fussy, drooling a ton (no swollen tonsils

ever). Then today, he has a high fever again. I just feel so

uncertain as to what to make of all of this. I thought some of the

expertise from this board could shed some light. Any thoughts?

Thank you so much, I've been a lurker for ages!

Tierney

mother of colson 6, caroline 2, and jack 1 ()

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Autos.

[Guest guest]

Hi Tierney my Name is Beth, My son has been on Orapred for 5 months

now and every time we give it to him (of course) it works....... But

then in 5-7 days later he gets the fever again, and again we give the

steriod..... but after the second treatment he is fine for another

month....i hope this is the case for you,,, hang in there

Beth

>

> Hi, my name is Tierney and my son Jack is 14 months old. He was

> diagnosed with when he was 9 months old, after having 105

> degree fevers at months 4, 5, 6, 7, 8, and 9. When he turned 12

> months, the ID doctor (that our ped referred us to at Children's

> Memorial Hosptial in Chicago) prescribed Orapred to be given at the

> onset of fever...just like so many of you. Well, we gave it to him

> at the fever that came when he turned 13 months. And then, he got

> no fever for 75 days ( I so thought we were done!) Well, at day

> 75...which was a week and a half ago, he got a fever of 106. I was

> certain it must not be periodic fever, because there was

> nothing " periodic " about it, right? Well I brought him to my ped,

> who was amazed how he was still able to wave and interact a little

> bit, despite this incredibly high fever. She didn't see any

> warnings of other things (meningitis, uti, etc.), so she said to go

> ahead and give him the orapred. So, we did. That was last friday

> (8 days ago), and the fever went right away, but he still didn't

> seem " himself " , he was fussy, drooling a ton (no swollen tonsils

> ever). Then today, he has a high fever again. I just feel so

> uncertain as to what to make of all of this. I thought some of the

> expertise from this board could shed some light. Any thoughts?

>

> Thank you so much, I've been a lurker for ages!

> Tierney

> mother of colson 6, caroline 2, and jack 1 ()

>

[Guest guest]

Tierney,

My daugther is 5 1/2 years old and has been having her fevers since

she was 6 months old. Her first one being 106.1. She always runs

between 105-106 and has on more than one occasion hit the 106 mark.

I have heard of others going higher. She is of course not herself

during these times, but is amazingly enough much more responsive than

I would imagine a child with a 106 temp to be. Having experienced

these fevers for 5 years now without any Physician interaction except

reccomended to ride them out and she will eventually grow out of

them. Her fevers have always followed a pattern, but there have been

a few times over the years where her pattern would skip and though

maybe this was the moment she would stop. Then she would start all

over again. This past winter was her longest break of several

months. I was so pleased to think it finally had passed. Then just

this month she started back again. I have noticed as she has gotten

older that her pattern has changed some and come not quite as

frequent but frequent enough to stay in some type of pattern. The

symptoms are always the same and able to distinguish form common

illnesses. So I do believe there can be a pause in the episode and

it once again continue. It sure would be great with all this

technology and research someone could give some spicific answers and

a cure!! So many Doctors and so many different opinions on what

should be done. It all seems to be a guessing game between

medications and procedures. If I tried everything I have read that

someone has tried with thier child we would be in continous medical

action. Some people have have great results with thier actions and

some none at all. Each child seems to respons differently. I

recognize feeling the need to resolve thier childs discomfort and

want to know why my child and how, where did it come from. Instead we

are currently dealing with each of them as they come and hopes that

one day we will have a " True " answer. At some point my husband and I

had to ask ourselves if the constant trials of medical treatment was

worse than the episodes themselves. If they were a sure thing it

would be worth it. But it seems to all be just guess work. I think

it is important as parents to continue to be each others ears and

shoulders. It is so comforting to understand your not the only one.

> Hi, my name is Tierney and my son Jack is 14 months old. He was

> diagnosed with when he was 9 months old, after having 105

> degree fevers at months 4, 5, 6, 7, 8, and 9. When he turned 12

> months, the ID doctor (that our ped referred us to at Children's

> Memorial Hosptial in Chicago) prescribed Orapred to be given at the

> onset of fever...just like so many of you. Well, we gave it to him

> at the fever that came when he turned 13 months. And then, he got

> no fever for 75 days ( I so thought we were done!) Well, at day

> 75...which was a week and a half ago, he got a fever of 106. I was

> certain it must not be periodic fever, because there was

> nothing " periodic " about it, right? Well I brought him to my ped,

> who was amazed how he was still able to wave and interact a little

> bit, despite this incredibly high fever. She didn't see any

> warnings of other things (meningitis, uti, etc.), so she said to go

> ahead and give him the orapred. So, we did. That was last friday

> (8 days ago), and the fever went right away, but he still didn't

> seem " himself " , he was fussy, drooling a ton (no swollen tonsils

> ever). Then today, he has a high fever again. I just feel so

> uncertain as to what to make of all of this. I thought some of the

> expertise from this board could shed some light. Any thoughts?

>

> Thank you so much, I've been a lurker for ages!

> Tierney

> mother of colson 6, caroline 2, and jack 1 ()

>

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

> Ahhh...imagining that irresistible " new car " smell?

> Check outnew cars at Autos.

>

>

[Guest guest]

Hi All,

I have been taking nature throid for 4 weeks now. I have been taking 1

grain in the morning and more recently half a grain in the evening

too. I started to feel great just over a week ago but have noticed a

couple of things.

Today I feel rotton, really tired, sick and have intermittant chest

pains (not very strong) just a dull ache accompanied by

breathlessness. BP is 116 / 68 heart rate is 57. I feel a bit anxious

and panicky and quite tired and generally low. I feel a bit trembly

inside and am about to go to bed. I also had an off day similar to

this in the week, although not as bad. I noticed that yesterday I was

quite manic and felt a bit too well (if you know what I mean) and so

spent 4 energetic hours in the snow, I also drank wine last night and

haven't had a drink for ages.It was also a late night. When I felt

unwell in the week I noiticed that one really energetic almost manic

day was followed by a huge slump the next. On the slump day I took 2

NAX which seemed to help me to get back on track.. But now I feel a

bit too worried to take any thing... what should I do..?

Any advice or recommendations greatly received.

Thanks emily x

[Guest guest]

Hi ,

Shaky inside does sound adrenal- as indicated by feeling

better with more NAX.

Taking Armour morning and night isn't usually recommended as the excess

T3 can cause sleep disturbances. Better to either do morning and early

afternoon ( say 2 pm) or take the lot a night ( not everyone does better

at night, but some swear by it) making sure of an empty stomach. If you

have low adrenals it can cause hyper symptoms because the thyroid meds

aren't being absorbed properly. Adrenals first then thyroid, so in your

case an increase in NAX might do the trick, then try the increase to 1

1/2 again

Worried...

Hi All,

I have been taking nature throid for 4 weeks now. I have been taking 1

grain in the morning and more recently half a grain in the evening

too. I started to feel great just over a week ago but have noticed a

couple of things.

Today I feel rotton, really tired, sick and have intermittant chest

pains (not very strong) just a dull ache accompanied by

breathlessness. BP is 116 / 68 heart rate is 57. I feel a bit anxious

and panicky and quite tired and generally low. I feel a bit trembly

inside and am about to go to bed. I also had an off day similar to

this in the week, although not as bad. I noticed that yesterday I was

quite manic and felt a bit too well (if you know what I mean) and so

spent 4 energetic hours in the snow, I also drank wine last night and

haven't had a drink for ages.It was also a late night. When I felt

unwell in the week I noiticed that one really energetic almost manic

day was followed by a huge slump the next. On the slump day I took 2

NAX which seemed to help me to get back on track.. But now I feel a

bit too worried to take any thing... what should I do..?

Any advice or recommendations greatly received.

Thanks emily x

------------------------------------

TPA is not medically qualified. Consult with a qualified medical

practitioner before changing medication.

[Guest guest]

Hi ,

I too had that upset tummy with NAX if I took more than a couple of

them and this is a problem for many people. I am glad you are

getting a lot of good advice from very knowledgeable people on this

forum. My adrenals were in a terrible state and Dr. P suggested the

larger amounts of NAX and NA as a last ditch attempt to get me sorted

out without resorting to HC. Normally you wouldn't take NAX or NA

after one pm but I was to take them throughout the day. After 3

weeks I spoke again to Dr. P who then put me onto HC because I was

still very unwell.

So I had been ill for many years, and very very ill for about

a year and a half. I am not 'well' yet but I am certainly on the

mend. I no longer have dreadful joint pain, symptoms of carpal

tunnel syndrome and extreme fatigue. This time last year I was

unable to even lift my legs to get out of bed. The NHS help -

eventually - was to provide physiotherapy and 'aids' at home...e.g

shower seat, additional handrail on my stairs, rail to help me out of

bed, risers for my sofa and a walking stick etc. I also got very

strong painkillers and that was my treatment. I've been

hospitalised, had many blood tests and they all said 'normal'.

Eventually I was diagnosed with CFS, Carpal Tunnel Syndrome and

Fibromyalgia. I was unwilling to accept that this was the way I

needed to live and with the help of the forum decided to start taking

my health into my own hands. I've been seeing Dr. P since end of

August last year. He, and the TPA members, have saved my life.

I still get tired easily because all the 'downtime' has left me very

unfit, but am leading a more normal life and am

hoping to get back to my studies and work this year. I am still

trying to find my 'sweet spot' (I love that term) I take all the vits

and minerals, 30mg of HC (10, 7.5, 5, 5, 2.5 mg) and 3 grains of

Nature Throid which I take in two doses, morning and afternoon. I am

needing to adjust again, I think, as my temps are still very low but

what a difference in my life. I am hoping to speak with Dr. P again

very soon.

Oops...this has been a long post but at least it is a positive one!

Please be careful what you are doing with the meds and don't try to

do too much at once. It took a long time to get so ill so patience

in getting well is necessary, hard thought that is. With

perseverance and good advice you will get there.

x

I have been

> taking nax but can't cope with more than 2 a day - I get an upset

> tummy, my next question for him is whether I need something more ...

> are you well now - how do you dose?

[Guest guest]

Thanks Sheila,

I will follow this advice, although I'm not looking forward to the

slump that follows the week without thyroid hormone...not sure which

is worse though the hypo or hyper symptoms...

I'm looking forward to feeling well again,

emily x

>

> HI

>

>.

>

> Some people do feel that Armour is more potent than the Nutri Throid. I

> think once your adrenals have been supported, as you are getting Ar

>

>

>

> _._,___

>

[Guest guest]

Hi ,

Now I am on NTH I find that on the 2 week approach to my period I

start to feel quite good, and then the day of my period I always feel

absolutely fab, or hyper, and then during my period and the week

following, I tend to feel pretty rough.

Sounds like it is a similar problem, unfortunately one I haven't yet

solved! Dr P has said that he feels that it is adrenal based, and

has asked me to increase my HC, not sure if it is working yet!

You can feel fairly sure that if your HR is low, then you are almost

certainly not actually going hyper..

If you find out what it is, PLEASE let me know - and I'll try and do

the same if I solve it!!

Leah xx

> 'normal' about two weeks ago. Just this last week acouple of days

> have not been so good as described - yesterday I felt rotton.

> My heart rate has been low for a long time - although on the days

> when I felt good it had crept up to 65 - 75 on one day which was

> really reassuring.