Hi from Dale

[Guest guest]

Dear Autti, thank you for getting the Acyclavir I.V. correctly I glad one if

us is babbling on because chickenpox was very scary for us when my daughter

reacted to it. Thank you for calm responses.

annette mom to cvid asthmatic

>From: Autti@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: Hi from Dale

>Date: Tue, 11 May 1999 10:56:07 EDT

>

>From: Autti@...

>

>Dear Sandy,

>

>I just went through this with and now have to worry about Mark getting

>them since he was exposed to his younger brother. I was told that the

> " worry " depends largely on the type of PID that each child has. A t-cell

>defect would be quite a concern as this is the cell that would help fight

>the

>virus for the most part. When got chicken pox 10 days ago his tcells

>were absent from being secondarily immunocompromised to steroid dependancy.

>There are other cases that would be questionably concerning if exposere

>took

>place, I would gather to think that it would be an individual concern.

>

>was probably at a greater risk then Mark and Mark is the one with the PID

>but

>because had no t-cells at the time his physician was really worried.

>I

>would take any case seriously, chicken pox can have secondary problems that

>are very serious. I would ask your physician what type of plan he would

>have

>if your child were exposed or came down with the chicken pox. When we

>found

>out that the boys were exposed their physician placed them on Intal

>nebulizer/Inhaler to protect their lungs as much as possible. SCID would

>most certainly be at the highest risk ( I think, Barb would know better).

>If

>Mark comes down with them he will follow the same course of treatment as

>

>did....5 days in the hospital on IV acyclovir and 7 days at home on oral

>acyclovir with Intal every 6 hours by nebulizer. Mark has some t-cell

>involvement with his PID. Don't get me wrong, a bcell PID could have

>problems as well I would imagine.

>

>OK, I am babbling now....I hope this has helped somewhat, but I am not an

>expert...only a mom!!! )

>

>Autumn mom to Cd5-Cd19 PID/ Samter's syndrome, A1A,GERD

>

>------------------------------------------------------------------------

>Having difficulty getting " in synch " with list members?

>http://www.onelist.com

>Try ONElist's Shared Calendar to organize events, meetings and more!

>------------------------------------------------------------------------

>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.

_______________________________________________________________

Get Free Email and Do More On The Web. Visit http://www.msn.com

[Guest guest]

Dear Sandy,

I just went through this with and now have to worry about Mark getting

them since he was exposed to his younger brother. I was told that the

" worry " depends largely on the type of PID that each child has. A t-cell

defect would be quite a concern as this is the cell that would help fight the

virus for the most part. When got chicken pox 10 days ago his tcells

were absent from being secondarily immunocompromised to steroid dependancy.

There are other cases that would be questionably concerning if exposere took

place, I would gather to think that it would be an individual concern.

was probably at a greater risk then Mark and Mark is the one with the PID but

because had no t-cells at the time his physician was really worried. I

would take any case seriously, chicken pox can have secondary problems that

are very serious. I would ask your physician what type of plan he would have

if your child were exposed or came down with the chicken pox. When we found

out that the boys were exposed their physician placed them on Intal

nebulizer/Inhaler to protect their lungs as much as possible. SCID would

most certainly be at the highest risk ( I think, Barb would know better). If

Mark comes down with them he will follow the same course of treatment as

did....5 days in the hospital on IV acyclovir and 7 days at home on oral

acyclovir with Intal every 6 hours by nebulizer. Mark has some t-cell

involvement with his PID. Don't get me wrong, a bcell PID could have

problems as well I would imagine.

OK, I am babbling now....I hope this has helped somewhat, but I am not an

expert...only a mom!!! )

Autumn mom to Cd5-Cd19 PID/ Samter's syndrome, A1A,GERD

[Guest guest]

Dear Sandy,

Annette is 100% correct and I cannot believe that I failed to mention that.

If there is exposure to an immunocompromised person VZIG can be given, but

the timing is crucial. It is a very important part in helping the person

with PID with Chicken Pox.

Autumn

[Guest guest]

Dear Annette,

I am curious. My son has a newly discovered form of PID. The key " red flag "

was that he did not make any response to the pneummovax...not a mark on the

page in 12 out of 12 titers (twice given). In addition he makes no response

to HIB or mennigiocococcal. There are 5 boys in the world with this...the

astonishing thing is that they have 100% of another cell (cd5+, which is a

premature bcell) that attacks the body. To date, they have yet to find a

female or an adult with this very rare PID syndrome. Please tell me more

about your daughter. There is extensive research being done right now on the

Cd5-Cd19 PID that my son has. If your daughter has this it would be

important for you to know.

Autumn mom to Mark cd5-Cd19 PID/ Samter's syndrome, AlA, GERD

[Guest guest]

Dear Dale and everyone else...

Thank you all for your continued concern for the boys. is the same..no

change. I will be talking to his physician very early tomorrow morning.

Mark had to have his Mickey -J button replaced today as the balloon had

ruptured. He began to have alot of pain and when they began the procedure

the fluoroscopy showed that the inside tubing had come out of the intestine

and coiled itself into the stomach cavity (again). The Interventional

radiologist told me that she suspects that the pseudomonas A. is eating away

at the balloon as this was Mark's 6th replacement since December and GI

bacterial overgrowth can do this (although, uncommon). She now wants to

replace Mark's button every 6 weeks to prevent any emergencies from occuring.

As of this evening, Mark was in even more pain then this morning and was

running a fever. He is to go in for a neurology appointment at 8am and then

I may have to call someone if he is not better. I am suppose to go to

Children's Hospital in Detroit to hear Mark's physician from Cleveland give a

lecture to their Immunology Department. The physicians there invited me to

attend the Grand Rounds and the lecture...they know us pretty good down there

and have been supportive of this newly discovered PID.

I will let you know how we make out at the appointment...for now I am off to

bed....I am exhausted and mornings come so fast around here.

Thanks again,

Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, A1A, GERD

[Guest guest]

Autumn,

Best wishes, we'll keep you all in our prayers.

Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD,

chronic sinusitis, IVIG,

[Guest guest]

You are so lucky that your Dr. wants you to lecture!!! Mine hasn't even

moved on anything yet, and yours actually wants you to participate! What a

wonderful feeling that must be!

I wish you luck in getting " our " point across!!

Sue G - Mom to M & M

Re: hi from Dale

>From: Autti@...

>

>Dear Dale and everyone else...

>

>Thank you all for your continued concern for the boys. is the

same..no

>change. I will be talking to his physician very early tomorrow morning.

>

>Mark had to have his Mickey -J button replaced today as the balloon had

>ruptured. He began to have alot of pain and when they began the procedure

>the fluoroscopy showed that the inside tubing had come out of the intestine

>and coiled itself into the stomach cavity (again). The Interventional

>radiologist told me that she suspects that the pseudomonas A. is eating

away

>at the balloon as this was Mark's 6th replacement since December and GI

>bacterial overgrowth can do this (although, uncommon). She now wants to

>replace Mark's button every 6 weeks to prevent any emergencies from

occuring.

> As of this evening, Mark was in even more pain then this morning and was

>running a fever. He is to go in for a neurology appointment at 8am and

then

>I may have to call someone if he is not better. I am suppose to go to

>Children's Hospital in Detroit to hear Mark's physician from Cleveland give

a

>lecture to their Immunology Department. The physicians there invited me to

>attend the Grand Rounds and the lecture...they know us pretty good down

there

>and have been supportive of this newly discovered PID.

>

>I will let you know how we make out at the appointment...for now I am off

to

>bed....I am exhausted and mornings come so fast around here.

>

>Thanks again,

>

>Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, A1A, GERD

>

>------------------------------------------------------------------------

>Where do some of the Internet's largest email lists reside?

>http://www.onelist.com

>At ONElist - the most scalable and reliable service on the Internet.

>------------------------------------------------------------------------

>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]

Dear Autumn, How are you? I hope you were able to get some rest. Sorry to

hear about Mark. I hope he is feeling better this morning before you go

see the Neurologist. I will keep you all in our prayers and things will get

better. Let us know how the rounds go what a wonderful experience to be

allowed to do that.

take care

annette mom to cvid asthmatic

>From: Autti@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: hi from Dale

>Date: Mon, 17 May 1999 23:38:27 EDT

>

>From: Autti@...

>

>Dear Dale and everyone else...

>

>Thank you all for your continued concern for the boys. is the

>same..no

>change. I will be talking to his physician very early tomorrow morning.

>

>Mark had to have his Mickey -J button replaced today as the balloon had

>ruptured. He began to have alot of pain and when they began the procedure

>the fluoroscopy showed that the inside tubing had come out of the intestine

>and coiled itself into the stomach cavity (again). The Interventional

>radiologist told me that she suspects that the pseudomonas A. is eating

>away

>at the balloon as this was Mark's 6th replacement since December and GI

>bacterial overgrowth can do this (although, uncommon). She now wants to

>replace Mark's button every 6 weeks to prevent any emergencies from

>occuring.

> As of this evening, Mark was in even more pain then this morning and was

>running a fever. He is to go in for a neurology appointment at 8am and

>then

>I may have to call someone if he is not better. I am suppose to go to

>Children's Hospital in Detroit to hear Mark's physician from Cleveland give

>a

>lecture to their Immunology Department. The physicians there invited me to

>attend the Grand Rounds and the lecture...they know us pretty good down

>there

>and have been supportive of this newly discovered PID.

>

>I will let you know how we make out at the appointment...for now I am off

>to

>bed....I am exhausted and mornings come so fast around here.

>

>Thanks again,

>

>Autumn mom to Mark Cd5-Cd19 PID/ Samter's syndrome, A1A, GERD

>

>------------------------------------------------------------------------

>Where do some of the Internet's largest email lists reside?

>http://www.onelist.com

>At ONElist - the most scalable and reliable service on the Internet.

>------------------------------------------------------------------------

>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.

_______________________________________________________________

Get Free Email and Do More On The Web. Visit http://www.msn.com

[Guest guest]

HI Sue...

I am sorry, I meant to say that Mark's doctor is giving the lecture...I was

invited to hear him speak. They wanted a parent's perspecitve. Its a start.

Hang in there and keep advocating.

I always say making a difference begins with me.

Autumn mom to Mark Cd5-Cd19 PID/ Samter's, GERD, A1A

[Guest guest]

Autumn,

Still to be invited to hear him lecture, and even know that people want to

hear a parents perspective is a long way from where I am!!!

Have a great time!

Sue G - Mom to M & M

Re: hi from Dale

>From: Autti@...

>

>HI Sue...

>

>I am sorry, I meant to say that Mark's doctor is giving the lecture...I was

>invited to hear him speak. They wanted a parent's perspecitve. Its a

start.

> Hang in there and keep advocating.

>I always say making a difference begins with me.

>

>Autumn mom to Mark Cd5-Cd19 PID/ Samter's, GERD, A1A

>

>------------------------------------------------------------------------

>ONElist: where real people with real interests get connected.

>http://www.onelist.com

>Join a new list today!

>------------------------------------------------------------------------

>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]

Dale,

You put that so eloquently. I thank you.

Autumn

[Guest guest]

Thanks Dale. I see what you mean. Our ped has been there with us from the

start and loves Ben so much. She'd never do unnecessary tests on him, she's

very conservative, I'm thankful for that. So maybe this will work out good.

Hope everyone has a good fourth, Ben will really enjoy the fireworks this

year! Take care, and thanks. Becky (mom to Ben, 21 mo. CVID, asthma)

Hi from Dale

> From: DaleMWeath@...

>

> from Dale, Mom to Katy, CVID, age 15

>

> Becky, I just read your post and you indicated that the immunologist

would

> only consult, but not make tests. We have found that to be the perfect

> arrangement. Our pediatrician and only our peditrician makes decisions

for

> Katy. We found the Immunologists wanted to treat her like a guinea pig,

> whereas the pediatrician (once we found the right one) has a more balanced

> approach to how many sticks this kid needs. So, we do that with all the

> specialists now. And we've really been able to cut back on the blood

draws,

> etc. We may see two or three different specialists, but ask the

> pediatrician to compile their requests for test and do them all at once

and

> then she usually throws in a couple of orders for things she wants checked

> out - and we're not just constantly taking blood. She also helps us to

> decide what is absolutely necessary, and what we could probably do without

> knowing. If your pediatrician is willing to work that way, it's great!

>

> I think other people in the group have their Immunologist as their primary

> doctor and everything goes through them. I think it depends on how your

> insurance works, and how complicated your case is.

>

> We have a standing appointment with our pediatrician every six months and

one

> with our local immunologist every six month - so that Katy gets a full

> physical every 3 months from one or the other. They work together very

well

> -- but only the pediatrician orders tests. Then we have " consulting "

> immunologist at UCSF, and consulting specialists.

>

> Best wishes to all our new Moms as well as all the old-timers! Try to

take

> some time out to enjoy the holidays. Sometimes chronic sickness tends to

> make us hold our breath and just live from one doctor's visit to the next

or

> from test to getting reults. That's a terrible way to spend this precious

> time. Try to practice living and learn to slow down and breathe deeply.

I

> remember when we first started the rounds of doctors I just felt like

> screaming " hurry up! " But, now that I see how complicated this disease

can

> be, I realize that they really were being wise and careful before

diagnosing.

>

>

> Happy Holidays to all. I think we're just going to try to get some rest

and

> get everyone well for a change. Katy's rashes & 's cold are both

> looking better.

>

> We're still praying for you Helen. And yes, Donna & Walt, we'd love to

hear

> from you, too.

>

> Best wishes for your vacation & Zach.

>

> In His service,

> Dale

>

> ---------------------------

[Guest guest]

Hi!

I remember those long horrible years when my son had to take prednisone. At

first he didn't know how to swallow pills, so we had to give him the liquid

form...60 mg a day. It tastes so nasty. Finally, when he learned how to

swallow pills, he would still be able to taste the medicine so we disguised

it in chocolate syrup. That worked until he was able to swallow the pills

better and faster. I just asked him about it and he said that the trick was

to swallow the pills very fast.

Lee

[Guest guest]

Before I forget.....

Big thank yous to Dale, Gail, and Kathy Antilla for the thoughtful cards and

gifts that you sent to the boys...they loved them. Your thoughtfulness was

so greatly appreciated.

Your kindness will always be remembered.

Autumn mom to Mark Cd5-Cd19 PID/ GERD, ASA, Samter's

[Guest guest]

sounds like a neat guy Lee. Macey actually took it without a second glance.

We had to give 10 cc's which was 2 syringes and she didn't bat an eye.

which was such a welcome relief after the Ceftin episode.

I should explain to everyone that Macey has oral motor delay/problems and

oral hyperdefenses. Her jaw and lower facial muscles aren't the right tone.

She does mouth exercises and her speech is affected. Her oral defenses are

heightened because of the sensory integration disorder. We hope to

introduce pills when she is in a good month where her usual meds can be

transitioned over to pill form and we can afford to miss a dose or resort

back to liquid.

Ursula - & Macey (CVID) mom

[Guest guest]

Dale-

Glad KAty had a great trip. Most have meant the work

to you when you were hearing her say more more more.

Let us kow more.

Praying for all those in Floyds path.

God Bless

===

and

(congential neutropenia, hypogammaglobulinemia, chronic sinusitis and

leukopenia)

mom to Evan 6, 4 and Abby Rose 2

__________________________________________________

[Guest guest]

Dale,

I know what you mean about never getting in to see the doctor when there was

a rash or a swelling somewhere. It can become quite frustrating! I finally

took pictures and showed them to the doctor. That helped him to be able to

understand what we had been talking about. Just an idea.

Lee

[Guest guest]

Dear Lee: Its to bad you had to have a Kodak moment to help the doctor, he

should see you anyway and believe what you describe unless the rash was that

infamous. (a little sarcastic humor this morning) Lee do you have any weight

gaining ideas for stubborn children? At this point I am so frustrated, she

lost four pounds and her right ear is infected again and off to the ent we

go. Hope your son is doing better and is not so tired. Take care and

forgive the sarcastic humor. Probably because I have to meet with my

husbands commander in an hour about demands for adequate health care without

the hassle.

sincerely,

annette and alissa

>From: Kmeyer1020@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: Hi from Dale

>Date: Thu, 23 Sep 1999 00:25:54 EDT

>

>From: Kmeyer1020@...

>

>Dale,

>

>I know what you mean about never getting in to see the doctor when there

>was

>a rash or a swelling somewhere. It can become quite frustrating! I

>finally

>took pictures and showed them to the doctor. That helped him to be able to

>understand what we had been talking about. Just an idea.

>

>Lee

>

>>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]

Dear Dale: Thank you for the suggestion, we have been giving her

milkshakes,bananas,yogurt,slushies, I have even been giving her pediasure

with icecream. She just will not finish anything and when she does the

first infection and the few pounds she puts on is gone. The only time we

had any weight gain was from the use of prednisone two years ago and then it

was all puffiness and bloat in the stomach. She gets out and plays until

she gets dizzy and her energy level is horrible. We were hoping the IVIG

would increase her stamina or her resistance, it has a bit but she has been

on it now eight months. And today she got sent home with an ear infection

again and we see our peds tomorrow. I cannot wait to see the ENT. So will

let you know. I hope Katy keeps on her schedule and enjoys all of her

activities, it gives me a goal to see my daughter in a few years also. We

also in thinking also do the vitamin bit and make sure she even has enough

fiber source intake also. Thanks again, have a nice weekend.

sincerely,

annette and alissa

>From: DaleMWeath@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Hi from Dale

>Date: Thu, 23 Sep 1999 12:10:59 EDT

>

>From: DaleMWeath@...

>

>from Dale, Mom to Katy, age 15, CVID

>

>Annette, I'm jumping in here because Katy was so very underweight between

>the ages of 7 and 12. At the time she wasn't having any problems with

>health, just enjoying life and busy with gymnastics, etc. and not gaining

>weight! I don't know whether you can use milk products or not, but a real

>weight gainer for Katy was milk-shakes. You can make them at home if you

>have a blender. Her pediatrician also recommended crispy bacon, peanut

>butter, whole milk, cheese, ice cream and lots of gooey caramel and

>chocolate syrups. I just had a fit about all the fat and cholesterol,

>etc.

>But she was adamant about getting Katy boosted. I didn't know how my

>health-conscious little girl would handle it -- but she loved it. She also

>loved what it did for her body and her gymnastics. She began building

>muscle!

>

>As I look at that list now -- I am amazed that God's timing is so perfect.

>That diet got her back on track, but today, she can't digest any of it

>because of the fat content and the lactose. But she has good memories of

>chocolate sundaies and peanut butter milk shakes!

>

>We are so health conscious, that we have trouble even thinking about these

>things for our kids. But, kids need a lot of protein and fat to build

>those

>growing muscles. I know there is going to be a lot of different opinions

>out

>there. All I know is that I gave it a chance and Katy thrived. She also

>developed an incredible sweet tooth during that time that I still can't

>curb!

> So there are down sides.

>

>Gotta get busy. Katy's beginning to knuckle down to school. She even told

>me yesterday that she " enjoyed " the new schedule. That's major progress!

>

>In His service,

>Dale

>

>>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]

,

You're welcome! It was fun writing about!

Lee

[Guest guest]

Dear Dale: Please wish Katy well and we hope she is feeling much better, her

numbers seem pretty good, she did have a good summer and remember how well

she has been doing,push lots of fluids and tell her she has an audience out

there waiting on her with her drama club. God Bless and will keep ;her in

our prayers,

annette and alissa

>From: DaleMWeath@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Hi from Dale

>Date: Wed, 6 Oct 1999 17:25:36 EDT

>

>from Dale, Mom to Katy, CVID, age 15

>

>Katy's in bed today. Her head cold has taken a more nasty route and she's

>really miserable. It's the first time she's really gone down with anything

>since last spring. It's funny how you convince yourself that this is all

>in

>the past and we're moving in a positive direction, then bang, down you go

>again. At least it's nothing serious, just looking like another possible

>sinus infection. We'll wait and see -- give it a few more days to decide

>whether it's coming or going.

>

>Her pediatrician just called with lab results from last week. ,

>thanks for your input on what they should check. Since they haven't been

>checking for anything except IgG - which is staying up nicely -- I insisted

>on their checking the IgA and IgM as well as zinc and B12.

>

>February 1997 IgA 12

> IgM 18

>

>September 99 IgA 8.8

> IgM 17

>

>So we're seeing a slight downward trend, so I'll have them keep checking it

>every 6 months, just to be informed.

>

>But her zinc was at 900 with a normal range of 580-1060. And her B12 was

>935

>with a normal range of 223-925! So I think those numbers look solid or

>better than solid.

>

>Her IgG was at 827 which is 3 points up or down from the last 6 months, so

>that seems okay to me.

>

>Looks like I'll be breaking in a new Immunologist soon. I've got to

>schedule

>an appointment.

>

>, how's the new school year going? Sounds like you're encountering

>some health problems. But what else is new? How are the seizures? It

>would just be too easy to do medical school with good health! is

>continuing to explore the medical field. He's got a field trip to the

>morgue

>scheduled for next week with the Medical Explorers group. We'll see if

>he

>stays upright for this one!

>

>Gotta answer my bell -- Katy's awake again.

>

>In His service,

>Dale

>

>

>------------------------------------------------------------------------

>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.

><< text3.html >>

[Guest guest]

Dear Dale: Did they ever check Zach's trough levels, they did Alissa's right

before she was ready to infuse. Might want to ask your immunologist. Take

care ,

annette and alissa

>

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: Hi from Dale

>Date: Wed, 06 Oct 1999 21:31:15 -0400

>

>Dale or anyone,

>

>Zach's been on IVIg for a yr in Nov. We have not have any of his levels

>checked since he started. I did ask the immuno about this once and she

>said

>it would be pointless since he's getting other's antibodies. She said that

>she won't check his levels until next summer when we take him off.... Is

>this true? Dale, Katy hasn't been off right? I noticed that you didn't

>check IGg, just the others. And was it checked w/pnumovax or just straight?

>Do you think that this is something I should ask we check? Also what's

>the

>significance of checking zinc & B12?

>

>

>

>

>At 05:25 PM 10/6/99 EDT, you wrote:

> >From: DaleMWeath@...

> >

> >from Dale, Mom to Katy, CVID, age 15

> >

> >Katy's in bed today. Her head cold has taken a more nasty route and

>she's

> >really miserable. It's the first time she's really gone down with

>anything

> >since last spring. It's funny how you convince yourself that this is all

>in

> >the past and we're moving in a positive direction, then bang, down you go

> >again. At least it's nothing serious, just looking like another possible

> >sinus infection. We'll wait and see -- give it a few more days to decide

> >whether it's coming or going.

> >

> >Her pediatrician just called with lab results from last week. ,

> >thanks for your input on what they should check. Since they haven't been

> >checking for anything except IgG - which is staying up nicely -- I

>insisted

> >on their checking the IgA and IgM as well as zinc and B12.

> >

> >February 1997 IgA 12

> > IgM 18

> >

> >September 99 IgA 8.8

> > IgM 17

> >

> >So we're seeing a slight downward trend, so I'll have them keep checking

>it

> >every 6 months, just to be informed.

> >

> >But her zinc was at 900 with a normal range of 580-1060. And her B12 was

>935

> >with a normal range of 223-925! So I think those numbers look solid or

> >better than solid.

> >

> >Her IgG was at 827 which is 3 points up or down from the last 6 months,

>so

> >that seems okay to me.

> >

> >Looks like I'll be breaking in a new Immunologist soon. I've got to

>schedule

> >an appointment.

> >

> >, how's the new school year going? Sounds like you're

>encountering

> >some health problems. But what else is new? How are the seizures?

>It

> >would just be too easy to do medical school with good health!

>is

> >continuing to explore the medical field. He's got a field trip to the

>morgue

> >scheduled for next week with the Medical Explorers group. We'll see if

>he

> >stays upright for this one!

> >

> >Gotta answer my bell -- Katy's awake again.

> >

> >In His service,

> >Dale

> >

> >>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.

> >

>

>

>------------------------------------------------------------------------

>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.

><< text3.html >>

[Guest guest]

Dale-

How is Katy feeling? I hope she recovers quickly.

Prayers and God Bless

Autumn-

I wish there was more for me to do. Your family has

been on our prayer group. Will say some more. God

Bless

=====

and

(congential neutropenia, hypogammaglobulinemia, chronic sinusitis and

leukopenia)

mom to Evan 6, 4 and Abby Rose 2

[Guest guest]

Dale or anyone,

Zach's been on IVIg for a yr in Nov. We have not have any of his levels

checked since he started. I did ask the immuno about this once and she said

it would be pointless since he's getting other's antibodies. She said that

she won't check his levels until next summer when we take him off.... Is

this true? Dale, Katy hasn't been off right? I noticed that you didn't

check IGg, just the others. And was it checked w/pnumovax or just straight?

Do you think that this is something I should ask we check? Also what's the

significance of checking zinc & B12?

At 05:25 PM 10/6/99 EDT, you wrote:

>From: DaleMWeath@...

>

>from Dale, Mom to Katy, CVID, age 15

>

>Katy's in bed today. Her head cold has taken a more nasty route and she's

>really miserable. It's the first time she's really gone down with anything

>since last spring. It's funny how you convince yourself that this is all in

>the past and we're moving in a positive direction, then bang, down you go

>again. At least it's nothing serious, just looking like another possible

>sinus infection. We'll wait and see -- give it a few more days to decide

>whether it's coming or going.

>

>Her pediatrician just called with lab results from last week. ,

>thanks for your input on what they should check. Since they haven't been

>checking for anything except IgG - which is staying up nicely -- I insisted

>on their checking the IgA and IgM as well as zinc and B12.

>

>February 1997 IgA 12

> IgM 18

>

>September 99 IgA 8.8

> IgM 17

>

>So we're seeing a slight downward trend, so I'll have them keep checking it

>every 6 months, just to be informed.

>

>But her zinc was at 900 with a normal range of 580-1060. And her B12 was 935

>with a normal range of 223-925! So I think those numbers look solid or

>better than solid.

>

>Her IgG was at 827 which is 3 points up or down from the last 6 months, so

>that seems okay to me.

>

>Looks like I'll be breaking in a new Immunologist soon. I've got to schedule

>an appointment.

>

>, how's the new school year going? Sounds like you're encountering

>some health problems. But what else is new? How are the seizures? It

>would just be too easy to do medical school with good health! is

>continuing to explore the medical field. He's got a field trip to the morgue

>scheduled for next week with the Medical Explorers group. We'll see if he

>stays upright for this one!

>

>Gotta answer my bell -- Katy's awake again.

>

>In His service,

>Dale

>

>>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]

Hi ,

Well, I am not the expert by any use of the word, but 's Immuno pretty

much checks his levels every month when we go in. She has only not done so

about 2 times and he has been getting IVIG since May (about 7-8 times now).

Re: Hi from Dale

>

>

>Dale or anyone,

>

>Zach's been on IVIg for a yr in Nov. We have not have any of his levels

>checked since he started. I did ask the immuno about this once and she

said

>it would be pointless since he's getting other's antibodies. She said that

>she won't check his levels until next summer when we take him off.... Is

>this true? Dale, Katy hasn't been off right? I noticed that you didn't

>check IGg, just the others. And was it checked w/pnumovax or just straight?

>Do you think that this is something I should ask we check? Also what's

the

>significance of checking zinc & B12?

>

>

>

>

>At 05:25 PM 10/6/99 EDT, you wrote:

>>From: DaleMWeath@...

>>

>>from Dale, Mom to Katy, CVID, age 15

>>

>>Katy's in bed today. Her head cold has taken a more nasty route and she's

>>really miserable. It's the first time she's really gone down with

anything

>>since last spring. It's funny how you convince yourself that this is all

in

>>the past and we're moving in a positive direction, then bang, down you go

>>again. At least it's nothing serious, just looking like another possible

>>sinus infection. We'll wait and see -- give it a few more days to decide

>>whether it's coming or going.

>>

>>Her pediatrician just called with lab results from last week. ,

>>thanks for your input on what they should check. Since they haven't been

>>checking for anything except IgG - which is staying up nicely -- I

insisted

>>on their checking the IgA and IgM as well as zinc and B12.

>>

>>February 1997 IgA 12

>> IgM 18

>>

>>September 99 IgA 8.8

>> IgM 17

>>

>>So we're seeing a slight downward trend, so I'll have them keep checking

it

>>every 6 months, just to be informed.

>>

>>But her zinc was at 900 with a normal range of 580-1060. And her B12 was

935

>>with a normal range of 223-925! So I think those numbers look solid or

>>better than solid.

>>

>>Her IgG was at 827 which is 3 points up or down from the last 6 months, so

>>that seems okay to me.

>>

>>Looks like I'll be breaking in a new Immunologist soon. I've got to

schedule

>>an appointment.

>>

>>, how's the new school year going? Sounds like you're

encountering

>>some health problems. But what else is new? How are the seizures?

It

>>would just be too easy to do medical school with good health! is

>>continuing to explore the medical field. He's got a field trip to the

morgue

>>scheduled for next week with the Medical Explorers group. We'll see if

he

>>stays upright for this one!

>>

>>Gotta answer my bell -- Katy's awake again.

>>

>>In His service,

>>Dale

>>

>>>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.

>>

>

>>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.