Re: Samter's in children?

[Guest guest]

Dear Anne,I'm so sorry to hear about your daughter. I think Samter's is rare in children. Poor girl. At least you know what it is and are on top of the issue, and that helps an enormous amount. My weight varies between 110 (when I'm ill) and 120 lb (am 5'9") and I take 325 mg twice a day and tolerate it well. My doctor also says people are often able to taper off the aspirin dose over a few years. I've got no polyp issues anymore (had my one and only sinus surgery a year and a half ago). i have had other issues, so it's not like being a normal person, but desense helped a lot. There is also a kind of licorice one can take to that is supposed to help coat the stomach before the aspirin -- Integrative Therapeutics makes something called Rhizinate Deglycrrhizinated Licorice. I got some, but don't really have stomach problems, so don't bother taking it and don't know if it works. It comes in regular and sugarless. Other companies may make something similar. I'd ask the doctor if he/she knows about this.Also I don't think caffeine would be a factor in Samter's but tea is high in salicylates which bothers some people pre-desense, and coffee has some salicylates as well. I personally don't think a salicylate free diet is realistic or solves the problem, but others may have different opinions on this.Good luck! That she has you as a knowledgable advocate will make all the difference in her recovery.Best,Joan On Apr 11, 2011, at 7:02 PM, Autumn wrote:

My daughter was diagnosed with Triad at 10. Had her first polyp removal surgery at age 13, Dec. 2010. They are already back, she is blocked in both nostrils. I would like to try desensitization but scared about the amount of aspirin for her size/weight 95 lbs. An allergy Dr. wanted to put her on 600mg a day down to 300mg a day for rest of life. This really scares me. Is this the proper amount? Anyone know any options for us? She takes nasonex every morning and does salt water rinses. This treatment doesn't help. For all of you thinking of smoking, coffee, alcohol elimination, my daughter has all the same symptoms as adult but she doesn't smoke or drink alcohol (at least I hope not!) will try eliminating caffeine.

Thank you,

Anne

[Guest guest]

Thank you Joan.

I also wanted to mention most toothpastes would give her really bad asthma,

would have to take rescue inhaler every night until we finally figured it out. I

think aspartame aggravates her symptoms too. Anyone else have problems with

peppermint or spearmint or aspartame?

>

> > My daughter was diagnosed with Triad at 10. Had her first polyp removal

surgery at age 13, Dec. 2010. They are already back, she is blocked in both

nostrils. I would like to try desensitization but scared about the amount of

aspirin for her size/weight 95 lbs. An allergy Dr. wanted to put her on 600mg a

day down to 300mg a day for rest of life. This really scares me. Is this the

proper amount? Anyone know any options for us? She takes nasonex every morning

and does salt water rinses. This treatment doesn't help. For all of you thinking

of smoking, coffee, alcohol elimination, my daughter has all the same symptoms

as adult but she doesn't smoke or drink alcohol (at least I hope not!) will try

eliminating caffeine.

> >

> > Thank you,

> > Anne

> >

> >

>

[Guest guest]

It may be the mint -- it's one of the worst things in terms of salicylates. Have you looked at salicylate diet websites? They may be useful until she is desensitized. Most berries for example are bad.On Apr 11, 2011, at 8:09 PM, Autumn wrote:

Thank you Joan.

I also wanted to mention most toothpastes would give her really bad asthma, would have to take rescue inhaler every night until we finally figured it out. I think aspartame aggravates her symptoms too. Anyone else have problems with peppermint or spearmint or aspartame?

>

> > My daughter was diagnosed with Triad at 10. Had her first polyp removal surgery at age 13, Dec. 2010. They are already back, she is blocked in both nostrils. I would like to try desensitization but scared about the amount of aspirin for her size/weight 95 lbs. An allergy Dr. wanted to put her on 600mg a day down to 300mg a day for rest of life. This really scares me. Is this the proper amount? Anyone know any options for us? She takes nasonex every morning and does salt water rinses. This treatment doesn't help. For all of you thinking of smoking, coffee, alcohol elimination, my daughter has all the same symptoms as adult but she doesn't smoke or drink alcohol (at least I hope not!) will try eliminating caffeine.

> >

> > Thank you,

> > Anne

> >

> >

>

[Guest guest]

Dear Anne

I’m sorry to hear about your daughter, I empathise because

I also was diagnosed with Samters when I was 10, had my first polyp surgery

when I was 13. Now I am 52. At the time, there were no medicine like Nasonex or

Rhinocord, not even Ventolin, back in the late 60’s, early 70’s. I

had numerous polyp removal surgeries, asthma attacks due to asprin and other

NSAÝDS, etc  until Samters was actually mentioned. Nevertheless, I managed to

have successful career of 30 years, am still actively working as a head teacher

and a lecturer, two sons, 27 and 21 years of age, a happy life, with all its ups

and downs. I hope your daughter keeps her spirit high, doesn’t let go, with

all the modern medication, believe me it is easier to manage Samters now. I think

a positive appoach to life is important, helps with our situation. Best of luck

Berna

From: samters

[mailto:samters ] On Behalf Of Autumn

Sent: Tuesday, April 12, 2011 4:03 AM

samters

Subject: Samter's in children?

My daughter was diagnosed with Triad at 10. Had

her first polyp removal surgery at age 13, Dec. 2010. They are already back,

she is blocked in both nostrils. I would like to try desensitization but scared

about the amount of aspirin for her size/weight 95 lbs. An allergy Dr. wanted

to put her on 600mg a day down to 300mg a day for rest of life. This really

scares me. Is this the proper amount? Anyone know any options for us? She takes

nasonex every morning and does salt water rinses. This treatment doesn't help.

For all of you thinking of smoking, coffee, alcohol elimination, my daughter

has all the same symptoms as adult but she doesn't smoke or drink alcohol (at

least I hope not!) will try eliminating caffeine.

Thank you,

Anne

[Guest guest]

Berna,

this is very encouraging to hear - thank you for sharing your story briefly with Anne and us.

Anne, i hope and believe our condition will become even more manageale with time and research,

Becky

From: Berna Bridge <bernabridge@...>samters Sent: Tue, 12 April, 2011 13:36:35Subject: RE: Samter's in children?

Dear Anne

I’m sorry to hear about your daughter, I empathise because I also was diagnosed with Samters when I was 10, had my first polyp surgery when I was 13. Now I am 52. At the time, there were no medicine like Nasonex or Rhinocord, not even Ventolin, back in the late 60’s, early 70’s. I had numerous polyp removal surgeries, asthma attacks due to asprin and other NSAİDS, etc until Samters was actually mentioned. Nevertheless, I managed to have successful career of 30 years, am still actively working as a head teacher and a lecturer, two sons, 27 and 21 years of age, a happy life, with all its ups and downs. I hope your daughter keeps her spirit high, doesn’t let go, with all the modern medication, believe me it is easier to manage Samters now. I think a positive appoach to life is important, helps with our situation. Best of luck

Berna

From: samters [mailto:samters ] On Behalf Of AutumnSent: Tuesday, April 12, 2011 4:03 AMsamters Subject: Samter's in children?

My daughter was diagnosed with Triad at 10. Had her first polyp removal surgery at age 13, Dec. 2010. They are already back, she is blocked in both nostrils. I would like to try desensitization but scared about the amount of aspirin for her size/weight 95 lbs. An allergy Dr. wanted to put her on 600mg a day down to 300mg a day for rest of life. This really scares me. Is this the proper amount? Anyone know any options for us? She takes nasonex every morning and does salt water rinses. This treatment doesn't help. For all of you thinking of smoking, coffee, alcohol elimination, my daughter has all the same symptoms as adult but she doesn't smoke or drink alcohol (at least I hope not!) will try eliminating caffeine.Thank you,Anne

[Guest guest]

Anne-

I think it stinks that even children can achieve greatness with this disease, drats!! A new doctor of mine recently told me the culprits, as more and more research is showing, are the hormonal changes that occur with puberty, and for girls that can be as early as 9 or 10, in conjunction with what they are thinking is some type of acquired virus. Many are exposed but only some are affected. Sometimes children can have a better chance to outgrow this, mine started around 15 or 16 and I am 36 now, no luck outgrowing it though for me. Science and technolgy are forever changing. I had tremendous success with pulmicourt (a sleeve of it that would typically go into a nebulizer as a liquid) I put right into my nasal rinse. Within 2 days it reduced a ton of inflammantion and brought back a significant sense of smell. Nasal rinse is done 2 times per day. This is a corti-steriod only to the nasal

area as compared to a prednisone pill taken orally that goes through the whole body, the lesser of 2 evils.

Good luck to you and your daughter!!

From: Autumn <gotautumn@...>samters Sent: Mon, April 11, 2011 9:02:38 PMSubject: Samter's in children?

My daughter was diagnosed with Triad at 10. Had her first polyp removal surgery at age 13, Dec. 2010. They are already back, she is blocked in both nostrils. I would like to try desensitization but scared about the amount of aspirin for her size/weight 95 lbs. An allergy Dr. wanted to put her on 600mg a day down to 300mg a day for rest of life. This really scares me. Is this the proper amount? Anyone know any options for us? She takes nasonex every morning and does salt water rinses. This treatment doesn't help. For all of you thinking of smoking, coffee, alcohol elimination, my daughter has all the same symptoms as adult but she doesn't smoke or drink alcohol (at least I hope not!) will try eliminating caffeine.Thank you,Anne

[Guest guest]

Anne,

Samter's in children is rare, in the sense that the condition develops on

average about the age of 25-35, but there are unfortunately a few reports of

precocious symptoms in this group.

Management in children is difficult for a number of obvious reasons ; one of

them, in my opinion, is the difficulty to keep their nose away from germs once

you manage to have it cleaned (through antibiotics, surgery, etc). Teens cannot

be expected to have the same sense of awareness about germs than adults, and no

matter how often you tell children not to pick their noses, it often is to no

avail. Therefore, I am afraid that once children get inside the vicious circle

of germ contamination/inflammation/polyps/more infection etc. it becomes very

difficult to get them out of it.

Sports such as swimming may also turn out out be problematic for a variety of

reasons : germ-infested water, chlorinated water, etc.

One easy thing to do, however, is a thorough check for allergies (food,

environmental) and have children desensitized once an allergy is evidenced.

Another good thing about children is that their immune system improves (matures)

when they turn adult, and this may sometimes help to contain germs more

efficiently.

Be sure that all irrigation material (pots, water) are sterile (use either

ready-made saline or make your own from boiled water) and, generally speaking,

disinfect everything that touches the nose. It will not kill any germs already

inside, but will help prevent more from coming in (as long as children don't

pick their nose).

>

> My daughter was diagnosed with Triad at 10. Had her first polyp removal

surgery at age 13, Dec. 2010. They are already back, she is blocked in both

nostrils. I would like to try desensitization but scared about the amount of

aspirin for her size/weight 95 lbs. An allergy Dr. wanted to put her on 600mg a

day down to 300mg a day for rest of life. This really scares me. Is this the

proper amount? Anyone know any options for us? She takes nasonex every morning

and does salt water rinses. This treatment doesn't help. For all of you

thinking of smoking, coffee, alcohol elimination, my daughter has all the same

symptoms as adult but she doesn't smoke or drink alcohol (at least I hope not!)

will try eliminating caffeine.

>

> Thank you,

> Anne

>