Re: UNSURE

[Guest guest]

Hi , it's good to see you back!.

I'm not sure why Olivia's docs would start her on Colchicine if

they are not sure she has FMF yet but I have read that some docs will

use it almost as a diagnostic tool. If the patient responds

positively to the Colchicine, i.e. the severity and frequency of

episodes is lessened, then they could safely assume that she does

have FMF. If it has no effect, then she does not have FMF. It is

widely known that Colchicine works only on FMF, it has no effect

whatsoever on the other genetic fever disorders.

I guess you need to ask yourself, do you see a difference? By the

way, how old is Olivia and how much does she weigh? When my son

started on Colchicine at age 9, he weighed 60 pounds and was started

on a dose of 600mcg per day for a month, then increased to 900mcg. It

had the almost immediate effect of eradicating his episodes. Except

for some joint pain and occasional tummy aches, he experienced no

more fevers or other symptoms. That was the case until he outgrew his

dose and then the episodes came back full blast, his Colchicine was

increased and the episodes went away again until the next growth

spurt!

Unfortunately, the Colchicine has it's own nasty little side

effects such as cramps and diarrhea, but for my son, that only lasts

for a few days after each increase.

In Olivia's case, since it seems like you've seen at least a tiny bit

of improvement, I would say (AND PLEASE REMEMBER THAT I AM NOT A

MEDICAL PERSON!!) either she hasn't been on the increased dose long

enough, OR maybe the dose she's on isn't high enough, OR maybe she

doesn't have FMF at all!

I'm sorry you have to wait til September to get results, just hang

in there and give the Colchicine a little more time.

Pat

> Hello,

> Ive been away for a while but have been reading all post,

> recently my daughter was diagnosed with either TRAPS, HIDS or FMF

and

> she is on colchicine, she has been on this 1000mcg daily for about

1

> 1/2 months although she has been on a lower dose for longer approx

4

> months before building up to 10000mcg with not much response.

> Now she is on the higher dose I am unsure if the tablets are

working?

> she use to have fevers around the 20th of the month, since being on

> colchine started (1000mcg 1st june) she had slight headache and

joint

> pains with no fever and slept from 4 in the afternoon untill 9am

the

> next morning and that was that.

> Now in July, on the 19th she again has complained of headache &

joint

> pains and tummy hurting, no fever then agin on the 21st very touchy

> headache and backach, tummy pains still no fever, and now since the

> 27 she has had tummy pains for three days with diarhiour the third

> day being the worst, this morning she was up at 5.30 on the loo and

> has had been back several times since.

> Please if anyone has any idea as to what is happening please help.

> My husband although very good seems to think the tablet is the

right

> one if she has any of the above, but I am not sure she has, we are

> still waiting for it to be confirmed in september we go to periodic

> fever clinic.

>

> Regards and Olivia

[Guest guest]

Hi , it's good to see you back!.

I'm not sure why Olivia's docs would start her on Colchicine if

they are not sure she has FMF yet but I have read that some docs will

use it almost as a diagnostic tool. If the patient responds

positively to the Colchicine, i.e. the severity and frequency of

episodes is lessened, then they could safely assume that she does

have FMF. If it has no effect, then she does not have FMF. It is

widely known that Colchicine works only on FMF, it has no effect

whatsoever on the other genetic fever disorders.

I guess you need to ask yourself, do you see a difference? By the

way, how old is Olivia and how much does she weigh? When my son

started on Colchicine at age 9, he weighed 60 pounds and was started

on a dose of 600mcg per day for a month, then increased to 900mcg. It

had the almost immediate effect of eradicating his episodes. Except

for some joint pain and occasional tummy aches, he experienced no

more fevers or other symptoms. That was the case until he outgrew his

dose and then the episodes came back full blast, his Colchicine was

increased and the episodes went away again until the next growth

spurt!

Unfortunately, the Colchicine has it's own nasty little side

effects such as cramps and diarrhea, but for my son, that only lasts

for a few days after each increase.

In Olivia's case, since it seems like you've seen at least a tiny bit

of improvement, I would say (AND PLEASE REMEMBER THAT I AM NOT A

MEDICAL PERSON!!) either she hasn't been on the increased dose long

enough, OR maybe the dose she's on isn't high enough, OR maybe she

doesn't have FMF at all!

I'm sorry you have to wait til September to get results, just hang

in there and give the Colchicine a little more time.

Pat

> Hello,

> Ive been away for a while but have been reading all post,

> recently my daughter was diagnosed with either TRAPS, HIDS or FMF

and

> she is on colchicine, she has been on this 1000mcg daily for about

1

> 1/2 months although she has been on a lower dose for longer approx

4

> months before building up to 10000mcg with not much response.

> Now she is on the higher dose I am unsure if the tablets are

working?

> she use to have fevers around the 20th of the month, since being on

> colchine started (1000mcg 1st june) she had slight headache and

joint

> pains with no fever and slept from 4 in the afternoon untill 9am

the

> next morning and that was that.

> Now in July, on the 19th she again has complained of headache &

joint

> pains and tummy hurting, no fever then agin on the 21st very touchy

> headache and backach, tummy pains still no fever, and now since the

> 27 she has had tummy pains for three days with diarhiour the third

> day being the worst, this morning she was up at 5.30 on the loo and

> has had been back several times since.

> Please if anyone has any idea as to what is happening please help.

> My husband although very good seems to think the tablet is the

right

> one if she has any of the above, but I am not sure she has, we are

> still waiting for it to be confirmed in september we go to periodic

> fever clinic.

>

> Regards and Olivia

[Guest guest]

Hi Pat, thank you for the welcome back, Your advice is good and it sounds

like you have the experiance to know what you are talking about, I hope your son

is well! I have delt with the fevers for 4 years I am just confussed by

this new stuff, but what your saying is the same as what Olivia 'the cramps etc

so I will keep going and at least wait untill September.

Thank you once again

best regards to you and your family

, mother to Olivia

[Guest guest]

Hi Pat, thank you for the welcome back, Your advice is good and it sounds

like you have the experiance to know what you are talking about, I hope your son

is well! I have delt with the fevers for 4 years I am just confussed by

this new stuff, but what your saying is the same as what Olivia 'the cramps etc

so I will keep going and at least wait untill September.

Thank you once again

best regards to you and your family

, mother to Olivia

[Guest guest]

Hello again Pat,

Just thought I would let you know that I have just received a call from our

Proff Woo her at Great Olmond street hospital and she has confirmed that they

have found a gene mutation in Olivias make up, I am not sure what that means

yet and she said she would speake more about it when we meet in september.

thanks again

and Olivia

[Guest guest]

Hello again Pat,

Just thought I would let you know that I have just received a call from our

Proff Woo her at Great Olmond street hospital and she has confirmed that they

have found a gene mutation in Olivias make up, I am not sure what that means

yet and she said she would speake more about it when we meet in september.

thanks again

and Olivia

[Guest guest]

Carla, Which website are you referring to? Cam

>

> Dear all

>

> Feeling exceptionally discouraged as of late. I think I've

decided not to

> pursue a surgeon after all, especially after looking at the

website. The

> flatback syndrome patients weren't so fortunate. Of course, I'm

sure these results

> were about what you'd get anywhere. That being the case, I don't

know if it

> would be worth all the pain & rehab to not be as kyphotic, yet

have the

> scoliosis remain virtually the same. To have to go through 2

surgeries, be away from

> my 5yo, suffer unimaginably AGAIN, & all that biz, & not have the

scoliosis

> corrected as well as the kyphosis... I don't know. These days,

this whole mess

> seems pointless. Especially, knowing that my spine is wanting to

do its own

> thing anyhow. I mean, I have kyphosis in an area of my spine

that's been

> fused for 23+ yrs. What happens if they revise everything, put in

all this

> hardware, & my spine starts doing " tricks " again??? I know,

terrible attitude; but

> right now I feel terrible. Sorry for sounding so gloomy.

>

>

> Blessings,

> Carla Kay

> Ps. 96:1,3, & 4a Sing to the LORD a new song; sing to the LORD,

all the

> earth. Declare His glory among the nations, His marvelous deeds

among all peoples.

> For great is the LORD and most worthy of praise...

>

[Guest guest]

Dear Carla Kay,

You are just the reason I stay with the group! I am three years out from my last revision, yes it took two, but I'm doing beautifully. I know it's easy to give up, be mad that you have to go through this mess a second time, but have heart, there are tons of good outcomes out there. My spine sounds very similiar to yours, mine wanted to go hard to the right, cracked a fusion mass, but there are ways the doc's can deal with it. My doc took out my titanium hardware from my first revision and put in Stainless Steel, a much harder hardware, and put in tons of screws and three rods and bolts. I have had no movement or progression since.

I ( and this is my opinion) don't know of any other way beside surgery to correct Flat back. I was in so much pain, and progressing like crazy that I had no other choice. Look me up in the stories section. I was very limited on what I could do in a day, very depressed, and feeling hopeless, and MAD at having this come back and bite me in the !@#$$ all these years later. I have three kids, two in grammar school, and one in High School while I was going through my surgeries. I felt like I was burdening them, but they are so glad to have their Mom back, I actually go hiking with them, can shop for hours. I feel twenty, and I'm 46. I have a new granddaughter, who is a chunk, who I carry around and play with, something I couldn't do with my own kids when they were babies. This surgery has given me my life back, I'm glad every day that I did it, despite the fact that it took more than one surgery to get me this way. Being painfree, upright and level is such a blessing.

Know that there are drawbacks, I'm numb over most of my back and one thigh, and cannot bend, I find these drawbacks minor compared to the pain I had prerevision. The not being able to bend is a pain, but you can get around it.

What I want to say most to you is that once you are over grieving for your sence of well being, the loss of your health, and anger at having to go through this yet again, you'll hopefully find the strenght to fight this again. There are many great surgeons doing this work, very dedicated to getting us Harrington Rod survivors well. I'm thankful everyday that I found it in myself to give doc's another chance to get me better so I could function and take care of my family again. My two doc's, Dr. Anant Kumar and Dr. O'Brien are my heros, without them I'd be living a painful and non productive life. I'm also thankful to my family who picked up the slack, and delt with a very angry Mom for many years, pain does awful things!

I hope this message will help you, you maybe Gloomy,but you are not beaten, we are here for you, no matter how down you feel! We have all been there!

Colorado Springs

[ ] Unsure

Dear allFeeling exceptionally discouraged as of late. I think I've decided not to pursue a surgeon after all, especially after looking at the website. The flatback syndrome patients weren't so fortunate. Of course, I'm sure these results were about what you'd get anywhere. That being the case, I don't know if it would be worth all the pain & rehab to not be as kyphotic, yet have the scoliosis remain virtually the same. To have to go through 2 surgeries, be away from my 5yo, suffer unimaginably AGAIN, & all that biz, & not have the scoliosis corrected as well as the kyphosis... I don't know. These days, this whole mess seems pointless. Especially, knowing that my spine is wanting to do its own thing anyhow. I mean, I have kyphosis in an area of my spine that's been fused for 23+ yrs. What happens if they revise everything, put in all this hardware, & my spine starts doing "tricks" again??? I know, terrible attitude; but right now I feel terrible. Sorry for sounding so gloomy.Blessings,Carla KayPs. 96:1,3, & 4a Sing to the LORD a new song; sing to the LORD, all the earth. Declare His glory among the nations, His marvelous deeds among all peoples. For great is the LORD and most worthy of praise...

[Guest guest]

When she speaks, does she do it clearly? I am very curious.

Laimi

From: joanwetterhahn <joanwetterhahn@...>

Subject: [ ] UNSURE

Date: Tuesday, July 29, 2008, 4:29 AM

I was told my 4 year old has apraxia. She does not even try to talk

most of the time. She talks when she wants to and only when she wants.

She asked the theraist Can I play in there next time? meaning the gym,

she seen other kids in their and wanted to play with them. The

therapist said it was a fluke and she really can't talk. I have heard

her talk on other occasions and she sometimes talks to the neighbor

children. The therapist called me a liar and said she has apraxia,

needless to say I switched therapists and the new one thinks it might

be a psycological problem. My question is how do I find out for sure? I

don't care what label they put on her as long as she starts talking. I

have also been told she might be Autistic even though she is very

friendly and plays with other kids she is going to see a different Dr.

for that on the 18th. What tests should I ask them to run etc.? I just

don't know what to think any more, the more Drs. I see the more

confused I become.

[Guest guest]

>

> From: joanwetterhahn <joanwetterhahn@...>

> Subject: [ ] UNSURE

>

> Date: Tuesday, July 29, 2008, 4:29 AM

>

>

>

>

>

>

> I was told my 4 year old has apraxia. She does not even try to talk

> most of the time. She talks when she wants to and only when she

wants.

> She asked the theraist Can I play in there next time? meaning the

gym,

> she seen other kids in their and wanted to play with them. The

> therapist said it was a fluke and she really can't talk. I have

heard

> her talk on other occasions and she sometimes talks to the neighbor

> children. The therapist called me a liar and said she has apraxia,

> needless to say I switched therapists and the new one thinks it

might

> be a psycological problem. My question is how do I find out for

sure? I

> don't care what label they put on her as long as she starts

talking. I

> have also been told she might be Autistic even though she is very

> friendly and plays with other kids she is going to see a different

Dr.

> for that on the 18th. What tests should I ask them to run etc.? I

just

> don't know what to think any more, the more Drs. I see the more

> confused I become.

>

> She speaks very clear when she speaks, most of the time she just

doesen't speak at all except for when she wants. It is very

frustrating because she went to the therapist and she did not improve

at all she went to therapy 12 times and only talked the one time.I

tried to tell the therapist to let her play in the gym after she seen

other kids playing and she would be mad and not talk if she didn't

let her. That was on her 3rd visit she said no and would only

talk when they let her play on starfall.com . I also told the

therapist about the web site. That time she listened. spent

most of her time on starfall so why bring her to therapy? She can do

that at home.

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