Update on Niko...FMF???

[Guest guest]

Hi again all!

Well we received the results from the full gene analysis and still

only 1 mutation came up heterozygus (carrier). We brought the results

to the Ped. Rheum. yesterday and she said because he has the monthly

fevers she wants to treat him with the colchicine even though he is

showing only carrier status. She said some carriers can actually have

symptoms of FMF. She said if he responds to the colichicine then she

will diagnose him FMF. If he does not respond she will diagnose him

. She wants to see him in 3 mos. She seemed very knowledgeable

about all of the periodic fever syndromes. She said it sounds like he

clinically presents but because of the heterogygus mutation

coming up she wants to treat as if FMF - because the only way to rule

out FMF is if there is a response to colichicine. Any thoughts out

there on this approach?

Thanks all!

- Niko (monthly fevers since 6 mos old - now almost 3)

[Guest guest]

My son's doctor too wanted him to take the colchicine, as a way to rule out FMF,

but we refused this medication. There are a few reasons:

1. His genetic testing was completely negative.

2. We have absolutely no Mediterranean ancestry. I know in a blended world this

is becoming more and more irrelevant.

3. I really thought and still think my son has classic .

4. I am lucky to still live in a place with a local pharmacy that actually

consults you about the medications you are being prescribed. I brought the med

to the pharmacist and asked her about it and she sent me away and told me she

was going to take a night and read up on colchicine use in children and get back

to me. I returned the next day and she informed me that colchicine is not FDA

approved for pediatrics and that colchicine has the known side effect of

arresting or retarding cell division. Based on this information and the fact

that my 18mos old at the time was growing at a fast rate and cells dividing by

the thousands or millions a day, there was no way I was going to risk that. I

aksed if she would give it to her toddler and her response was only if it was a

critical medical situation. The Rheumatologist at the NIH informed me that

colchicine was completely safe and no monitoring was required. This was

completely in contradiction of what the pharmacist said. On top of that the

pharmacist told me that when a child is on colchicine, they need labs run 2-4

times a year to make sure the child it tolerating the drug.

Since my son's urine was tested fairly frequently for protien build up, I could

safely rule out Amyloidosis and no current need for the colchicine.

Take with with a grain of salt beause I am extremely conservative with

medications because I have had a family member who was devastated by being on a

supposedly common and safe drug for a long period of time. It was a huge

wake-up call to me that pharmaceuticals should only be taken with careful

consideration. I am at a far end of the spectrum for caution.

With that said, I have read many places colchicine is a miracle for many people

suffering from a host of problems including FMF and can be a lifesaver in many

cases. I have read many stories where this drug was completely benign. However

for us, when I weighed the risks, I really did not want to use colchicine given

our negative testing results and my gut instinct.

Good luck, it is so hard to make these decisions.

[Guest guest]

My son's doctor too wanted him to take the colchicine, as a way to rule out FMF,

but we refused this medication. There are a few reasons:

1. His genetic testing was completely negative.

2. We have absolutely no Mediterranean ancestry. I know in a blended world this

is becoming more and more irrelevant.

3. I really thought and still think my son has classic .

4. I am lucky to still live in a place with a local pharmacy that actually

consults you about the medications you are being prescribed. I brought the med

to the pharmacist and asked her about it and she sent me away and told me she

was going to take a night and read up on colchicine use in children and get back

to me. I returned the next day and she informed me that colchicine is not FDA

approved for pediatrics and that colchicine has the known side effect of

arresting or retarding cell division. Based on this information and the fact

that my 18mos old at the time was growing at a fast rate and cells dividing by

the thousands or millions a day, there was no way I was going to risk that. I

aksed if she would give it to her toddler and her response was only if it was a

critical medical situation. The Rheumatologist at the NIH informed me that

colchicine was completely safe and no monitoring was required. This was

completely in contradiction of what the pharmacist said. On top of that the

pharmacist told me that when a child is on colchicine, they need labs run 2-4

times a year to make sure the child it tolerating the drug.

Since my son's urine was tested fairly frequently for protien build up, I could

safely rule out Amyloidosis and no current need for the colchicine.

Take with with a grain of salt beause I am extremely conservative with

medications because I have had a family member who was devastated by being on a

supposedly common and safe drug for a long period of time. It was a huge

wake-up call to me that pharmaceuticals should only be taken with careful

consideration. I am at a far end of the spectrum for caution.

With that said, I have read many places colchicine is a miracle for many people

suffering from a host of problems including FMF and can be a lifesaver in many

cases. I have read many stories where this drug was completely benign. However

for us, when I weighed the risks, I really did not want to use colchicine given

our negative testing results and my gut instinct.

Good luck, it is so hard to make these decisions.

[Guest guest]

I respect your choice. I have been on this board a long time my daughter is 7

and has been fevering since birth. I wont get into her history but I do have to

reply to what your pharmacy said, while respecting his/her info at the same

time!

Colchicine has been in use in children for over 20 years. It does have some

heavy digestive side effects(stomach cramping, ). These tend to ease as the body

adjusts to med. My daughter took it for over 4 years and we only weaned her off

when we introduced a new med. It is FDA approved for kids if it was not health

insurance companies would not cover it. I for one was very nervous about it

when we first heard about it. My pharmacy also ? the use of it in an infant.

They had only dispensed it to adults with GOUT. I do not want to seem like I

am negative I respect your choice I just want to make sure that this does not

cause a 'rolling panic' on the board. This subject comes up often when we must

choice to medicate or not. Some children have more severe than others(my

daughter can hit 107.8 in 30 minutes, severe mouth sore joint pain etc etc)

I have added 2 links the first is a great one ! Your right this is a hard

choice and I wish none of us were here making these!

http://www.mayoclinic.com/health/familial-mediterranean-fever/DS00766

http://www.umm.edu/ency/article/000363.htm

[Guest guest]

I respect your choice. I have been on this board a long time my daughter is 7

and has been fevering since birth. I wont get into her history but I do have to

reply to what your pharmacy said, while respecting his/her info at the same

time!

Colchicine has been in use in children for over 20 years. It does have some

heavy digestive side effects(stomach cramping, ). These tend to ease as the body

adjusts to med. My daughter took it for over 4 years and we only weaned her off

when we introduced a new med. It is FDA approved for kids if it was not health

insurance companies would not cover it. I for one was very nervous about it

when we first heard about it. My pharmacy also ? the use of it in an infant.

They had only dispensed it to adults with GOUT. I do not want to seem like I

am negative I respect your choice I just want to make sure that this does not

cause a 'rolling panic' on the board. This subject comes up often when we must

choice to medicate or not. Some children have more severe than others(my

daughter can hit 107.8 in 30 minutes, severe mouth sore joint pain etc etc)

I have added 2 links the first is a great one ! Your right this is a hard

choice and I wish none of us were here making these!

http://www.mayoclinic.com/health/familial-mediterranean-fever/DS00766

http://www.umm.edu/ency/article/000363.htm