Re: Diagnosis from Saint Louis Children's Hospital?

[Guest guest]

Christie,

Hi there!!! We, too, make a drive to St. Louis Children's, and we

are going back in the end of March for a follow-up. Our family

drives from Doniphan, and so it can be a long 3 hour drive. We were

originally seen by Dr. ka Haynes in Infectious Diseases, but she

immediately transferred us to Immunology/Rheumatism as she thought he

had instead of some rogue virus like my pediatrician first

thought. So now we are currently being seen by a Dr. Thatayatikom

(or Dr. Ben since nobody can pronounce his last name), and a Dr.

Beigelman. Both gentlemen were very nice and to the point. Both

also thought that my son has , but we've been doing CBC's for

the past 5 1/2 weeks to rule out cyclic neutropenia, and we had

bloodwork drawn to rule out things like TRAPS, FMF, and HIDS. My son

had a recent surprise bout of fever just this past Saturday. It was

a week and a half early, but he had all the typical symptoms. I took

him to see his pediatrician yesterday, and he said to try the

prednisolone to see if it knocked out the fever. This was after all

lab tests (CBC, CMP, Flu A & B, RSV, and Strep) came back perfect.

Sure enough, his fever was knocked out within 2 hours, and today he's

been acting as if nothing was wrong, although his lymph glands in his

neck are still puffy and tender. We are going to push for a

tonsilectomy in the next 2-3 years, and my pediatrician agrees that

it may help. But in any case, so far our experiences with SLC have

been great!

[Guest guest]

Christie,

Hi there!!! We, too, make a drive to St. Louis Children's, and we

are going back in the end of March for a follow-up. Our family

drives from Doniphan, and so it can be a long 3 hour drive. We were

originally seen by Dr. ka Haynes in Infectious Diseases, but she

immediately transferred us to Immunology/Rheumatism as she thought he

had instead of some rogue virus like my pediatrician first

thought. So now we are currently being seen by a Dr. Thatayatikom

(or Dr. Ben since nobody can pronounce his last name), and a Dr.

Beigelman. Both gentlemen were very nice and to the point. Both

also thought that my son has , but we've been doing CBC's for

the past 5 1/2 weeks to rule out cyclic neutropenia, and we had

bloodwork drawn to rule out things like TRAPS, FMF, and HIDS. My son

had a recent surprise bout of fever just this past Saturday. It was

a week and a half early, but he had all the typical symptoms. I took

him to see his pediatrician yesterday, and he said to try the

prednisolone to see if it knocked out the fever. This was after all

lab tests (CBC, CMP, Flu A & B, RSV, and Strep) came back perfect.

Sure enough, his fever was knocked out within 2 hours, and today he's

been acting as if nothing was wrong, although his lymph glands in his

neck are still puffy and tender. We are going to push for a

tonsilectomy in the next 2-3 years, and my pediatrician agrees that

it may help. But in any case, so far our experiences with SLC have

been great!

[Guest guest]

Christie,

Hi there!!! We, too, make a drive to St. Louis Children's, and we

are going back in the end of March for a follow-up. Our family

drives from Doniphan, and so it can be a long 3 hour drive. We were

originally seen by Dr. ka Haynes in Infectious Diseases, but she

immediately transferred us to Immunology/Rheumatism as she thought he

had instead of some rogue virus like my pediatrician first

thought. So now we are currently being seen by a Dr. Thatayatikom

(or Dr. Ben since nobody can pronounce his last name), and a Dr.

Beigelman. Both gentlemen were very nice and to the point. Both

also thought that my son has , but we've been doing CBC's for

the past 5 1/2 weeks to rule out cyclic neutropenia, and we had

bloodwork drawn to rule out things like TRAPS, FMF, and HIDS. My son

had a recent surprise bout of fever just this past Saturday. It was

a week and a half early, but he had all the typical symptoms. I took

him to see his pediatrician yesterday, and he said to try the

prednisolone to see if it knocked out the fever. This was after all

lab tests (CBC, CMP, Flu A & B, RSV, and Strep) came back perfect.

Sure enough, his fever was knocked out within 2 hours, and today he's

been acting as if nothing was wrong, although his lymph glands in his

neck are still puffy and tender. We are going to push for a

tonsilectomy in the next 2-3 years, and my pediatrician agrees that

it may help. But in any case, so far our experiences with SLC have

been great!

[Guest guest]

Christie,

my son nick is 3 1/2 and was fevering every 14 days

for 5 days. Our immunologist RX for cimetidine and

nick has been on that for 6 months and they only thing

that that has done was delayed the episodes to 21 days

and they episode are less severe. I keep asking the

DR about a T & A and she keeps telling me NO that it is

not a proven by studies and the studies are all

written by ENT's. I however disagree with her because

of all these posts you read. There are so many

positive results from the sources (us the parents) I

am in Bergen County NJ 10 miles outside of NYC and Iam

going to try to convince my DR that a T & A might be the

only answer to stop this madness we are living

through. The Steriod does abort the cycle but then

the cycle comes back sooner and more intense. No

Steriods for us and my DR just keeps saying he will

outgrow it eventually. but the mouth sores are bad he

doesnt eat for days. Good Luck

[Guest guest]

Christie,

my son nick is 3 1/2 and was fevering every 14 days

for 5 days. Our immunologist RX for cimetidine and

nick has been on that for 6 months and they only thing

that that has done was delayed the episodes to 21 days

and they episode are less severe. I keep asking the

DR about a T & A and she keeps telling me NO that it is

not a proven by studies and the studies are all

written by ENT's. I however disagree with her because

of all these posts you read. There are so many

positive results from the sources (us the parents) I

am in Bergen County NJ 10 miles outside of NYC and Iam

going to try to convince my DR that a T & A might be the

only answer to stop this madness we are living

through. The Steriod does abort the cycle but then

the cycle comes back sooner and more intense. No

Steriods for us and my DR just keeps saying he will

outgrow it eventually. but the mouth sores are bad he

doesnt eat for days. Good Luck

[Guest guest]

Christie,

my son nick is 3 1/2 and was fevering every 14 days

for 5 days. Our immunologist RX for cimetidine and

nick has been on that for 6 months and they only thing

that that has done was delayed the episodes to 21 days

and they episode are less severe. I keep asking the

DR about a T & A and she keeps telling me NO that it is

not a proven by studies and the studies are all

written by ENT's. I however disagree with her because

of all these posts you read. There are so many

positive results from the sources (us the parents) I

am in Bergen County NJ 10 miles outside of NYC and Iam

going to try to convince my DR that a T & A might be the

only answer to stop this madness we are living

through. The Steriod does abort the cycle but then

the cycle comes back sooner and more intense. No

Steriods for us and my DR just keeps saying he will

outgrow it eventually. but the mouth sores are bad he

doesnt eat for days. Good Luck

[Guest guest]

We have been going to St. Louis Children's Hospital for over a year,

but our initial diagnosis was elsewhere. We have seen Dr. Orscheln in

Infectious Disease. We really like her and she has been great to work

with.

We are seriously considering a T & A, but just want to be more

comfortable with the diagnosis since our son has not had much

testing to exclude other things. Dr. Orscheln has referred us to Dr.

White & his department and we will be seeing him in February. I guess

it is more like a second opinion and a little to confirm the

diagnosis for us.

Dr. White has other patients (here in the group & other) and I

have heard positive things about him. The best thing is that he is

familiar with period fevers and should be a help to you.

Would love to hear how your visit goes!

Melody

[Guest guest]

We have been going to St. Louis Children's Hospital for over a year,

but our initial diagnosis was elsewhere. We have seen Dr. Orscheln in

Infectious Disease. We really like her and she has been great to work

with.

We are seriously considering a T & A, but just want to be more

comfortable with the diagnosis since our son has not had much

testing to exclude other things. Dr. Orscheln has referred us to Dr.

White & his department and we will be seeing him in February. I guess

it is more like a second opinion and a little to confirm the

diagnosis for us.

Dr. White has other patients (here in the group & other) and I

have heard positive things about him. The best thing is that he is

familiar with period fevers and should be a help to you.

Would love to hear how your visit goes!

Melody

[Guest guest]

We have been going to St. Louis Children's Hospital for over a year,

but our initial diagnosis was elsewhere. We have seen Dr. Orscheln in

Infectious Disease. We really like her and she has been great to work

with.

We are seriously considering a T & A, but just want to be more

comfortable with the diagnosis since our son has not had much

testing to exclude other things. Dr. Orscheln has referred us to Dr.

White & his department and we will be seeing him in February. I guess

it is more like a second opinion and a little to confirm the

diagnosis for us.

Dr. White has other patients (here in the group & other) and I

have heard positive things about him. The best thing is that he is

familiar with period fevers and should be a help to you.

Would love to hear how your visit goes!

Melody

[Guest guest]

Cheryl,

Thanks for the info. I'm afraid my doctor might say the same

thing. My son Jack's sores get so bad that he can't eat, drink, or

talk. What we did was bought a big syringe from a pet supply

store. We keep vanilla pediasure on hand at all times. We have to

syringe the liquid into the back of his mouth so he can eat. The

episodes are still ultra-stressful, but knowing that he is getting

some liquid with nutritional value helps. And, you're right--the

steroids not only shortened the length between episodes but seemed

to increase their severity. The only reason we do it is to end the

really bad episodes he has. Thankfully, his fevers/sores aren't

coming as often as they used to, but I'd like to at least have the

option of the T & A if they start getting worse again. Good luck

with Nick. I hope we all find something that works for our

children. . . and soon.

Christie