Re: We finally saw an immunologist!

[Guest guest]

Wenoka,

My daughter takes Singulair chewable every night for asthma. My son got

an increased dose in IVIG at his last immuno. appt. also - now, 20 grams

at 79 to 80 pounds. He takes Gamimune N. Has been sick a lot recently? My

son's increase in IVIG was due to increased weight.

Jan

and Wenoka wrote:

> After 1 1/2 years, finally got to see an immunologist again. Dr.

> Harville moved to our Children's hospital from Duke about 8-9 months or so

> ago. He pumped up the IVIG from 10g to 15g (Sam weighs 57 lbs), put him on

> daily abx for a year every other month - Amox and Septra. Also prescribed

> Zyrtec, Singulair, Hydroxyzine and Tussi 12. Holy Cow! He hasn't had to

> be on this many different meds since he was 17 months and in the hospital

> with the meningel encephalitus.

>

> Is this typical???

>

> Isn't Singulair an asthma medication? ( hasn't shown any signs of

> asthma, so I was just wondering if I were remembering wrong. They

> prescribed it 1 1/2 years ago when he had coughing spasms that they weren't

> sure of the cause. It didn't do any good then and the virus left as fast

> as it came.)

>

> I'm just praying that I can keep track of all the meds....

>

> God bless,

>

> Wenoka

>

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

>

>

[Guest guest]

Wenoka,

My daughter takes Singulair chewable every night for asthma. My son got

an increased dose in IVIG at his last immuno. appt. also - now, 20 grams

at 79 to 80 pounds. He takes Gamimune N. Has been sick a lot recently? My

son's increase in IVIG was due to increased weight.

Jan

and Wenoka wrote:

> After 1 1/2 years, finally got to see an immunologist again. Dr.

> Harville moved to our Children's hospital from Duke about 8-9 months or so

> ago. He pumped up the IVIG from 10g to 15g (Sam weighs 57 lbs), put him on

> daily abx for a year every other month - Amox and Septra. Also prescribed

> Zyrtec, Singulair, Hydroxyzine and Tussi 12. Holy Cow! He hasn't had to

> be on this many different meds since he was 17 months and in the hospital

> with the meningel encephalitus.

>

> Is this typical???

>

> Isn't Singulair an asthma medication? ( hasn't shown any signs of

> asthma, so I was just wondering if I were remembering wrong. They

> prescribed it 1 1/2 years ago when he had coughing spasms that they weren't

> sure of the cause. It didn't do any good then and the virus left as fast

> as it came.)

>

> I'm just praying that I can keep track of all the meds....

>

> God bless,

>

> Wenoka

>

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

>

>

[Guest guest]

Wenoka - Terry is AWESOME!!!!! He was Macey's

immunologist here in Georgia in 98 then went to Arkansas

Children's Hospital. Where do you live? He was at Duke

before he was in Georgia. The doctors at Duke that

Macey sees recommended him. Tell him Macey and Ursula

Holleman say hello.

Terry started Macey on Singulair as a stabilizing drug

for her asthma as well as lung problems. He also

started her on a daily dose in the morning of Zyrtec but

had her on Atarax (hydroxyzine) at night before bed.

He's good about preventive meds. He is by far one of

the most intelligent immunologists (and ped

rheumatologists) that I have ever known. I wish we had

him back but he was destin for bigger things.

I'll have to send you a direct email of he and Macey,

it's so cute.

Hope the meds help out. When do you have the follow up

appointment? Our first appointment with him back in 98

was 3 hrs long. He was great about answering all our

questions and even took time to look over all the past

xrays and ct scans.

--

Ursula Holleman

Macey's mom (6 yr. old with CVID,

asthma, sinus

disease, GERD, kidney reflux,

Sensory Integration

Disorder, Diabetes Insipidus)

http://home.att.net/~maceyh/

http://groups.yahoo.com/group/PedPI

D

[Guest guest]

Wenoka - Terry is AWESOME!!!!! He was Macey's

immunologist here in Georgia in 98 then went to Arkansas

Children's Hospital. Where do you live? He was at Duke

before he was in Georgia. The doctors at Duke that

Macey sees recommended him. Tell him Macey and Ursula

Holleman say hello.

Terry started Macey on Singulair as a stabilizing drug

for her asthma as well as lung problems. He also

started her on a daily dose in the morning of Zyrtec but

had her on Atarax (hydroxyzine) at night before bed.

He's good about preventive meds. He is by far one of

the most intelligent immunologists (and ped

rheumatologists) that I have ever known. I wish we had

him back but he was destin for bigger things.

I'll have to send you a direct email of he and Macey,

it's so cute.

Hope the meds help out. When do you have the follow up

appointment? Our first appointment with him back in 98

was 3 hrs long. He was great about answering all our

questions and even took time to look over all the past

xrays and ct scans.

--

Ursula Holleman

Macey's mom (6 yr. old with CVID,

asthma, sinus

disease, GERD, kidney reflux,

Sensory Integration

Disorder, Diabetes Insipidus)

http://home.att.net/~maceyh/

http://groups.yahoo.com/group/PedPI

D

[Guest guest]

Wenoka:

We're new at the sinus stuff but I can tell you that sure is a major

grouch with it. I hope the boost helps .

Just had our recheck for sinus... the double course of Omnicef has made a

dent but we're not home free by any means. So another double course and a

recheck, and if she's not all better they want to do a CT scan. Funny thing

that none of this is bothering me too much -- I've heard so many moms here

talking about sinus stuff I feel very prepared. So I'm glad you all shared,

it makes it easier to start down this path knowing what may be ahead. But

let's hope the Omnicef does its job! She's been a beast again, so I knew we

weren't out of the woods. Oh, but the great news is her lungs still sound

perfect! They think the wheezing and coughing and ER visit of last Saturday

sounded a lot like a croup thing. ????

(mom to , age 2-1/2, polysaccharide antibody def, IgA def)

[Guest guest]

Wenoka:

We're new at the sinus stuff but I can tell you that sure is a major

grouch with it. I hope the boost helps .

Just had our recheck for sinus... the double course of Omnicef has made a

dent but we're not home free by any means. So another double course and a

recheck, and if she's not all better they want to do a CT scan. Funny thing

that none of this is bothering me too much -- I've heard so many moms here

talking about sinus stuff I feel very prepared. So I'm glad you all shared,

it makes it easier to start down this path knowing what may be ahead. But

let's hope the Omnicef does its job! She's been a beast again, so I knew we

weren't out of the woods. Oh, but the great news is her lungs still sound

perfect! They think the wheezing and coughing and ER visit of last Saturday

sounded a lot like a croup thing. ????

(mom to , age 2-1/2, polysaccharide antibody def, IgA def)

[Guest guest]

Sam is constantly fighting a sinus infection. It is really the only

indication that he has a health problem, but it is a regular problem. They

had just increased his dose from 7.5 to 10g about 3 months ago when he hit

55 lbs. Dr. Harville said that if this doesn't work to get completely rid

of the sinus problem he'll increase the IVIG to 17.5 or even 20g. He

appears to be an excellent doctor though, and I was told that he was on the

cutting edge of the immunology field, so I'm not exactly worried, just a

little disconcerted. I've always been the kind who hated taking even

Tylenol and prefers natural remedies, so it's been an adjustment having a

child who needs meds so often. Oh well. I'm really looking forward to

seeing not having to deal with the sinus problem. I'm wondering if

his grouchy little self will start being less moody. 8-)

God bless,

Wenoka

At 08:33 PM 09/25/2001 -0500, you wrote:

>Wenoka,

> My daughter takes Singulair chewable every night for asthma. My son got

>an increased dose in IVIG at his last immuno. appt. also - now, 20 grams

>at 79 to 80 pounds. He takes Gamimune N. Has been sick a lot

recently? My son's increase in IVIG was due to increased weight.

> Jan

[Guest guest]

Sam is constantly fighting a sinus infection. It is really the only

indication that he has a health problem, but it is a regular problem. They

had just increased his dose from 7.5 to 10g about 3 months ago when he hit

55 lbs. Dr. Harville said that if this doesn't work to get completely rid

of the sinus problem he'll increase the IVIG to 17.5 or even 20g. He

appears to be an excellent doctor though, and I was told that he was on the

cutting edge of the immunology field, so I'm not exactly worried, just a

little disconcerted. I've always been the kind who hated taking even

Tylenol and prefers natural remedies, so it's been an adjustment having a

child who needs meds so often. Oh well. I'm really looking forward to

seeing not having to deal with the sinus problem. I'm wondering if

his grouchy little self will start being less moody. 8-)

God bless,

Wenoka

At 08:33 PM 09/25/2001 -0500, you wrote:

>Wenoka,

> My daughter takes Singulair chewable every night for asthma. My son got

>an increased dose in IVIG at his last immuno. appt. also - now, 20 grams

>at 79 to 80 pounds. He takes Gamimune N. Has been sick a lot

recently? My son's increase in IVIG was due to increased weight.

> Jan

[Guest guest]

Sam is constantly fighting a sinus infection. It is really the only

indication that he has a health problem, but it is a regular problem. They

had just increased his dose from 7.5 to 10g about 3 months ago when he hit

55 lbs. Dr. Harville said that if this doesn't work to get completely rid

of the sinus problem he'll increase the IVIG to 17.5 or even 20g. He

appears to be an excellent doctor though, and I was told that he was on the

cutting edge of the immunology field, so I'm not exactly worried, just a

little disconcerted. I've always been the kind who hated taking even

Tylenol and prefers natural remedies, so it's been an adjustment having a

child who needs meds so often. Oh well. I'm really looking forward to

seeing not having to deal with the sinus problem. I'm wondering if

his grouchy little self will start being less moody. 8-)

God bless,

Wenoka

At 08:33 PM 09/25/2001 -0500, you wrote:

>Wenoka,

> My daughter takes Singulair chewable every night for asthma. My son got

>an increased dose in IVIG at his last immuno. appt. also - now, 20 grams

>at 79 to 80 pounds. He takes Gamimune N. Has been sick a lot

recently? My son's increase in IVIG was due to increased weight.

> Jan

[Guest guest]

I live about 1 hour northeast of Little Rock, AR.

I didn't know Dr. Harville had been at Georgia, our nurse just mentioned

that he'd been at Duke. Yes. My first impression was very favorable. He

seems to be an excellent doctor. Highly intelligent. Very thorough. I

never once felt that there was a time limit on our appointment, nor did I

feel that he rushed through even the slightest thing. He even looked

behind 's eyes (and suggested we see an opthamologist, as one eye is

focusing slower than the other). And got the best night's sleep

last night in I don't know how long. I didn't hear him cough at all.

Does he usually prescribe a high dose of preventive abx? The pharmacist

mentioned that was getting an adult dose of the amox.

I was surprised at the Singulair because doesn't show symptoms of

asthma, and his lungs are always clear. I get a little anxious about meds

because just about every med they gave him for cough, antihistamine or

decongestant would make him VERY aggressive. He was NEVER like that any

other time, but put him on that stuff and he'd go bananas. We were so glad

to finally get the Notuss since it was more effective AND didn't seem to

have any adverse side effects to his mood. I'm hoping he's outgrown the

problem, but need to mention it to his teacher just in case. (He goes 1/2

days to an early learning center.) I forgot to mention that to Dr. Harville.

Sam is so proud to be able to swallow pills now instead of getting the

liquid stuff. The little ones were no problem at all, but he had a hard

time with the amox capsule. I finally dabbed some peanut butter on it and

he was able to swallow it right away. This morning I didn't even try it by

itself, just put a little pb on it and down it went the first time.

They didn't give me a follow-up appointment. His nurse usually comes

around and checks during his IVIG, so she'll probably come in next

month. If I do get to see him again anytime soon, I'll be sure and let him

know that you said hi. Would love to see the pic of Macey and him.

God bless,

Wenoka ( - Hyper IgM)

At 03:16 AM 09/26/2001 +0000, you wrote:

>Wenoka - Terry is AWESOME!!!!! He was Macey's

>immunologist here in Georgia in 98 then went to Arkansas

>Children's Hospital. Where do you live? He was at Duke

>before he was in Georgia. The doctors at Duke that

>Macey sees recommended him. Tell him Macey and Ursula

>Holleman say hello.

>

>Terry started Macey on Singulair as a stabilizing drug

>for her asthma as well as lung problems. He also

>started her on a daily dose in the morning of Zyrtec but

>had her on Atarax (hydroxyzine) at night before bed.

>He's good about preventive meds. He is by far one of

>the most intelligent immunologists (and ped

>rheumatologists) that I have ever known. I wish we had

>him back but he was destin for bigger things.

>

>I'll have to send you a direct email of he and Macey,

>it's so cute.

>

>Hope the meds help out. When do you have the follow up

>appointment? Our first appointment with him back in 98

>was 3 hrs long. He was great about answering all our

>questions and even took time to look over all the past

>xrays and ct scans.

>

> --

>Ursula Holleman

>Macey's mom (6 yr. old with CVID,

>asthma, sinus

>disease, GERD, kidney reflux,

>Sensory Integration

[Guest guest]

I live about 1 hour northeast of Little Rock, AR.

I didn't know Dr. Harville had been at Georgia, our nurse just mentioned

that he'd been at Duke. Yes. My first impression was very favorable. He

seems to be an excellent doctor. Highly intelligent. Very thorough. I

never once felt that there was a time limit on our appointment, nor did I

feel that he rushed through even the slightest thing. He even looked

behind 's eyes (and suggested we see an opthamologist, as one eye is

focusing slower than the other). And got the best night's sleep

last night in I don't know how long. I didn't hear him cough at all.

Does he usually prescribe a high dose of preventive abx? The pharmacist

mentioned that was getting an adult dose of the amox.

I was surprised at the Singulair because doesn't show symptoms of

asthma, and his lungs are always clear. I get a little anxious about meds

because just about every med they gave him for cough, antihistamine or

decongestant would make him VERY aggressive. He was NEVER like that any

other time, but put him on that stuff and he'd go bananas. We were so glad

to finally get the Notuss since it was more effective AND didn't seem to

have any adverse side effects to his mood. I'm hoping he's outgrown the

problem, but need to mention it to his teacher just in case. (He goes 1/2

days to an early learning center.) I forgot to mention that to Dr. Harville.

Sam is so proud to be able to swallow pills now instead of getting the

liquid stuff. The little ones were no problem at all, but he had a hard

time with the amox capsule. I finally dabbed some peanut butter on it and

he was able to swallow it right away. This morning I didn't even try it by

itself, just put a little pb on it and down it went the first time.

They didn't give me a follow-up appointment. His nurse usually comes

around and checks during his IVIG, so she'll probably come in next

month. If I do get to see him again anytime soon, I'll be sure and let him

know that you said hi. Would love to see the pic of Macey and him.

God bless,

Wenoka ( - Hyper IgM)

At 03:16 AM 09/26/2001 +0000, you wrote:

>Wenoka - Terry is AWESOME!!!!! He was Macey's

>immunologist here in Georgia in 98 then went to Arkansas

>Children's Hospital. Where do you live? He was at Duke

>before he was in Georgia. The doctors at Duke that

>Macey sees recommended him. Tell him Macey and Ursula

>Holleman say hello.

>

>Terry started Macey on Singulair as a stabilizing drug

>for her asthma as well as lung problems. He also

>started her on a daily dose in the morning of Zyrtec but

>had her on Atarax (hydroxyzine) at night before bed.

>He's good about preventive meds. He is by far one of

>the most intelligent immunologists (and ped

>rheumatologists) that I have ever known. I wish we had

>him back but he was destin for bigger things.

>

>I'll have to send you a direct email of he and Macey,

>it's so cute.

>

>Hope the meds help out. When do you have the follow up

>appointment? Our first appointment with him back in 98

>was 3 hrs long. He was great about answering all our

>questions and even took time to look over all the past

>xrays and ct scans.

>

> --

>Ursula Holleman

>Macey's mom (6 yr. old with CVID,

>asthma, sinus

>disease, GERD, kidney reflux,

>Sensory Integration

[Guest guest]

Wenoka,

It sounds like you are on the right path now. I hope that this dr can get

things settled and under control. It sounds like he's a great doctor.

Grace 8/97 (IgA deficiency, poor t-cell response, poor pneumococcal

antibodies, EA's, recent adenoidectomy, resolving almost total hair loss,

penicillin allergy)

Caelan 8/99 ((IgA deficiency, poor t-cell response, poor pneumococcal

antibodies,eosinophilic esophagitis, GERD, anaphylaxis milk , egg, peanut,

Biaxin, allergy to tomato, peas, carrots, squash, penicillin, EA's,

adenoidectomy)

[Guest guest]

In a message dated 9/27/2001 8:06:17 AM Pacific Daylight Time,

sandraray@... writes:

> I didn't see the original post but thought I'd chime in here about how we

> remember which meds to give

I bought a big bulletin board that is half cork board and half white (dry

erase) board. Then I used permanent marker to make the lines of a chart with

the days of the week across the top on the white board. We use the dry erase

markers to write the medications, dosages and times down the left side of the

board and we put a check in each as we give Kody his medicine. I also have a

spot to write medications that will need re-fills, and I have all of Kody's

doctors and phone numbers written down there as well. The cork board side

comes in handy for the appointment cards, prescriptions slips, etc. This

works great because we can see at a glance what medication is due, and we

just erase the check marks Saturday night after the last dosage and start

over the next week. This is very handy for the rare occasion that we have a

sitter and for Grandma when she is here.

Diane, Mom to Kody, IgG subclass def. 2 & 3, seizure disorder, asthma, GERD,

acute sinus disease. Osteomylitis 2/2000, 4 sets ear tubes, port placement

1/2001, tonsils and adenoids 5/2001, IVIG since 6/2000.

[Guest guest]

> > I'm just praying that I can keep track of all the meds....

Wenoka,

I didn't see the original post but thought I'd chime in here about how we

remember which meds to give. I made up a chart on the computer with the

medicines, & days of the week & typical times (a.m., noon, p.m.). Then, I

put an X in the box when Autumn is supposed to get the med. I made another

box next to it for us to check mark when we actually gave it to her. We

stick it to the refrigerator with a magnet so each of us knows what she is

supposed to get & what she got the last time. is the worst about

remember to tell me what he gave her & when, so this helps a lot! Plus,

since it's on computer, it's easy to update when the meds change.

Ray, mother to Tabitha (age 6), Autumn, age 3 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan Avery, 4 months

[Guest guest]

What a great idea! My girls love to play with markers & I'm afraid they

would add to the board, though.

Ray, mother to Tabitha (age 6), Autumn, age 3 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan Avery, 4 months

> I bought a big bulletin board that is half cork board and half white (dry

erase) board.

[Guest guest]

In a message dated 9/27/2001 1:03:01 PM Pacific Daylight Time,

sandraray@... writes:

> My kids would get the stool! LOL! I come in the house all the time & find

> things that were on shelves I know they couldn't reach & they are playing

> with them or on the table/counter, etc. I've lectured them many times about

> climbing, but to no avail. What's more, I never see them do this! Sneaky

> kids. . .!

>

>

ROFL! Too funny! I don't have that problem with Kody anymore. When he was 3

he was a perpetual climber until once he fell off the counter and gave

himself a concussion, and then just a few days later he was trying to climb

on the bathroom counter, fell off the toilet he was standing on and cracked

his mouth on the side of the tub! He had to have stitches in his lip and his

two front teeth are dead (I can't wait for those baby teeth to fall out!).

Anyway, he learned his lesson and has never climbed up on anything since!

Diane, Mom to Kody, IgG subclass def. 2 & 3, seizure disorder, asthma, GERD,

acute sinus disease. Osteomylitis 2/2000, 4 sets ear tubes, port placement

1/2001, tonsils and adenoids 5/2001, IVIG since 6/2000.

[Guest guest]

In a message dated 9/27/2001 1:03:01 PM Pacific Daylight Time,

sandraray@... writes:

> My kids would get the stool! LOL! I come in the house all the time & find

> things that were on shelves I know they couldn't reach & they are playing

> with them or on the table/counter, etc. I've lectured them many times about

> climbing, but to no avail. What's more, I never see them do this! Sneaky

> kids. . .!

>

>

ROFL! Too funny! I don't have that problem with Kody anymore. When he was 3

he was a perpetual climber until once he fell off the counter and gave

himself a concussion, and then just a few days later he was trying to climb

on the bathroom counter, fell off the toilet he was standing on and cracked

his mouth on the side of the tub! He had to have stitches in his lip and his

two front teeth are dead (I can't wait for those baby teeth to fall out!).

Anyway, he learned his lesson and has never climbed up on anything since!

Diane, Mom to Kody, IgG subclass def. 2 & 3, seizure disorder, asthma, GERD,

acute sinus disease. Osteomylitis 2/2000, 4 sets ear tubes, port placement

1/2001, tonsils and adenoids 5/2001, IVIG since 6/2000.

[Guest guest]

In a message dated 9/27/2001 1:03:01 PM Pacific Daylight Time,

sandraray@... writes:

> My kids would get the stool! LOL! I come in the house all the time & find

> things that were on shelves I know they couldn't reach & they are playing

> with them or on the table/counter, etc. I've lectured them many times about

> climbing, but to no avail. What's more, I never see them do this! Sneaky

> kids. . .!

>

>

ROFL! Too funny! I don't have that problem with Kody anymore. When he was 3

he was a perpetual climber until once he fell off the counter and gave

himself a concussion, and then just a few days later he was trying to climb

on the bathroom counter, fell off the toilet he was standing on and cracked

his mouth on the side of the tub! He had to have stitches in his lip and his

two front teeth are dead (I can't wait for those baby teeth to fall out!).

Anyway, he learned his lesson and has never climbed up on anything since!

Diane, Mom to Kody, IgG subclass def. 2 & 3, seizure disorder, asthma, GERD,

acute sinus disease. Osteomylitis 2/2000, 4 sets ear tubes, port placement

1/2001, tonsils and adenoids 5/2001, IVIG since 6/2000.

[Guest guest]

Autumn is the perpetually bruised child. . .she's always got some new bruise

from some " adventure " she went on. Usually that means climbing the castle

(at day care--large outdoor toy), swinging from the tree, etc. She always

tells me how she got them.

Tabitha's more sneaky than Autumn--probably because she's the oldest & used

to testing limits. Autumn just follows her along. They never do anything

dangerous--in fact, my husband & I were just saying last night that they

crack us up with their adventures! Too funny!

Ray, mother to Tabitha (age 6), Autumn, age 3 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan Avery, 4 months

[Guest guest]

Autumn is the perpetually bruised child. . .she's always got some new bruise

from some " adventure " she went on. Usually that means climbing the castle

(at day care--large outdoor toy), swinging from the tree, etc. She always

tells me how she got them.

Tabitha's more sneaky than Autumn--probably because she's the oldest & used

to testing limits. Autumn just follows her along. They never do anything

dangerous--in fact, my husband & I were just saying last night that they

crack us up with their adventures! Too funny!

Ray, mother to Tabitha (age 6), Autumn, age 3 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan Avery, 4 months

[Guest guest]

Autumn is the perpetually bruised child. . .she's always got some new bruise

from some " adventure " she went on. Usually that means climbing the castle

(at day care--large outdoor toy), swinging from the tree, etc. She always

tells me how she got them.

Tabitha's more sneaky than Autumn--probably because she's the oldest & used

to testing limits. Autumn just follows her along. They never do anything

dangerous--in fact, my husband & I were just saying last night that they

crack us up with their adventures! Too funny!

Ray, mother to Tabitha (age 6), Autumn, age 3 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan Avery, 4 months