Hi from Dale

[Guest guest]

I guess maybe I should explain #2 son's life

a little better....

My son was ten years old before he was actually

diagnosed. So up until then, he felt like he was

just a " normal " kid who got sick alot. He played

travel ice hockey, travel baseball, city rec soccer,

and had earned a purple belt in Shotokan karate at

age 6. The constant antibiotics and trips to the

doctor, the repeated bouts of pneumonia and

hospitalizations, well they were just things that

his doctor said he would " grow out of " and he

constantly would state " I think he's doing a little

better, don't you? "

So then comes the hammer, the official " you're not

like other kids " . His lungs have apparently taken a

real beating from all the infections, so he's not

physically the same kid he was a couple of years ago.

No more hockey, so there is a big hole - he " lost "

the buddies he had been with (Lived with is probably the

best term for travel hockey) six months of each year

since age 5.

He takes more medication now than he ever has, and I

think he's almost in " mourning " for the life he used

to have - even if he was sick half the time.

Probably what hurts him the most are the goof ups who

say things without thinking like " Gee, and I thought

your BROTHER was SHORT " or " is such a gifted

athlete, you wouldn't know was even from the

same family " , or " With a brother like , you would

think that would be a little more athletic "

or " Oh yes, that's right, you're 's brother,

gee he did REALLY well in my class " or " is

such a good runner, we're just waiting for to

take off too " . And they say this sort of thing in front of

the boy.

I'm kind of boiling right now, the gym teacher my

youngest " just be quiet and put the jersey on, you

whiner, your brother wouldn't complain " on Monday.

A sweaty, dirty, jersey with visable mold that he

wore for 45 minutes. He had his own gym clothes,

but the teacher wanted to split them into teams,

and this shirt had been worn by at least eight other

kids on Monday alone, before my kid ever reached

gym class. So at 3pm, an hour after gym

class, when he walked into my office, his eyes were

red and swollen, rash on chest and neck, and nose

flowing like a river. By Tuesday morning the temp

was 102 and the sinuses are a lost cause. All because

" your brother wouldn't complain " .

Sorry to vent, but as you know some days just really

stink.

Conatser

conatser@...

[Guest guest]

Dear Dale, Glad s infusion went well, Alissa's did also, God Bless and

take care, I liked your advise on puberty,

annette and alissa

>From: DaleMWeath@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Hi from Dale

>Date: Wed, 27 Oct 1999 01:57:36 EDT

>

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

>

>, Just now catching up on my mail this week. The most helpful thing

>that I have done in watching my two kids hit puberty and survive is to

>listen

>carefully to other parents who have healthy kids. Guess what? They have

>the

>exact same questions. Well, ours are a little more complicated because our

>youngest is also the sick one -- but it happens to every one who has more

>than one child -- regardless of age difference, regardless of illness,

>regardless of gender. When you raise two kids, they will grow up with

>different abilities and different skills and different social skills, etc.

>and when they hit puberty we grieve for them because it's hard. But, we've

>got to give them the tools to survive and cope with life as it is and teach

>them compassion for the other fellow whether he's winning or losing.

>Don't

>pity your sick child to the point where he can't see his important role of

>being proud of his brother. If he can learn to rejoice and not resent,

>you

>will have raised a very special young man. Remember that the goal is

>always

>to raise them to be functioning adults -- learning how to respond when

>someone is better than you in a particular area is important in all aspects

>of life.

>

>Hang in there and remember -- it's a perfectly normal process called

> " growing

>up! "

>

>Katy got her IV today. I'm so pleased that I'm not hearing anything more

>from Coram about shortages. They have just kept her supplied. And our

>new

>nurse is great.

>

>Gotta get some sleep!

>

>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]

, I'd say it was conference time at the school! That kind of thing makes

me so mad.....hope it never happens again, becky

Re: Hi from Dale

>

>

> I guess maybe I should explain #2 son's life

> a little better....

>

> My son was ten years old before he was actually

> diagnosed. So up until then, he felt like he was

> just a " normal " kid who got sick alot. He played

> travel ice hockey, travel baseball, city rec soccer,

> and had earned a purple belt in Shotokan karate at

> age 6. The constant antibiotics and trips to the

> doctor, the repeated bouts of pneumonia and

> hospitalizations, well they were just things that

> his doctor said he would " grow out of " and he

> constantly would state " I think he's doing a little

> better, don't you? "

>

> So then comes the hammer, the official " you're not

> like other kids " . His lungs have apparently taken a

> real beating from all the infections, so he's not

> physically the same kid he was a couple of years ago.

> No more hockey, so there is a big hole - he " lost "

> the buddies he had been with (Lived with is probably the

> best term for travel hockey) six months of each year

> since age 5.

>

> He takes more medication now than he ever has, and I

> think he's almost in " mourning " for the life he used

> to have - even if he was sick half the time.

>

> Probably what hurts him the most are the goof ups who

> say things without thinking like " Gee, and I thought

> your BROTHER was SHORT " or " is such a gifted

> athlete, you wouldn't know was even from the

> same family " , or " With a brother like , you would

> think that would be a little more athletic "

> or " Oh yes, that's right, you're 's brother,

> gee he did REALLY well in my class " or " is

> such a good runner, we're just waiting for to

> take off too " . And they say this sort of thing in front of

> the boy.

>

> I'm kind of boiling right now, the gym teacher my

> youngest " just be quiet and put the jersey on, you

> whiner, your brother wouldn't complain " on Monday.

> A sweaty, dirty, jersey with visable mold that he

> wore for 45 minutes. He had his own gym clothes,

> but the teacher wanted to split them into teams,

> and this shirt had been worn by at least eight other

> kids on Monday alone, before my kid ever reached

> gym class. So at 3pm, an hour after gym

> class, when he walked into my office, his eyes were

> red and swollen, rash on chest and neck, and nose

> flowing like a river. By Tuesday morning the temp

> was 102 and the sinuses are a lost cause. All because

> " your brother wouldn't complain " .

>

> Sorry to vent, but as you know some days just really

> stink.

>

>

>

> Conatser

> conatser@...

>

> > 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: We ran the IVIG yesterday at slower rate and Alissa was not dizzy

until she woke up this morning. We do not know if it is the rate or the

nurse thought it is because she is ataxic and it just her bodies way of

excepting a blood product,because she said she had other patients on other

blood products that have had same symptoms. I will keep tract and let you

know,

Hope Katy is feeling better,

annette and alissa

>From: DaleMWeath@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: hi from dale

>Date: Thu, 28 Oct 1999 11:01:38 EDT

>

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

>

>Annette, Is your daughter the one who complains of dizziness and headache

>after the infusion? If so, watch closely for her comments on this " slower "

>infusion. We found that the slower we run the IV, the less crud Katy has

>afterward. There seems to be a direct relationship between speed and

>after

>effects. Watch and make notes. Glad it went well.

>

>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]

,

I have to sound like a tyrant, but I'd make it very clear to the school that

your son has health problems and the legal responsabilities that they have to

protect him....obviously the message didn't get through the first time.

Sometimes just reminding them of the out of control legal system we now have

makes them sit up any pay attention.

good luck.

sandra

[Guest guest]

Dear Dale: Glad you had such a wonderful visit with your new doctor!!! My

daughter loves hers, Has Katy ever had any bruising from inhaled steroids?

Alissa is being tested for cbc,differential and corisol level, she is just a

mass of bruising all over her body? Hope you don't mind me asking, Have a

great time at her new play and wish her well,she will do beautifully,

regards,

annette and alissa

>From: DaleMWeath@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Hi from Dale

>Date: Sat, 6 Nov 1999 14:26:10 EST

>

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

>

>, take care of yourself. It might be a good time to let the

>in-laws

>help out and take care of you!

>

>Autumn, We're praying!

>

>Our visit with new Immunologist went very well. Katy liked him which was a

>big factor. She perked up and participated in the conversation -- which

>was

>a very good sign. If she doesn't like a doctor, she just curls up inside.

> And she really liked it when he suggested she wait 6 weeks on IVIG and

>test

>trough levels -- hoping that she could spread out her doses a little more.

>Wow! That would be a treat! We'll see how it goes. He was very

>encouraging

>and optimistic about her future and yet, seems a little more cautious and

>understanding of possibilities than our ped. For example, he wants more

>blood work done each 6 months -- including checking liver function,

>platelets, etc. He's also ordered a chest x-ray and a sinus MRI just to

>get

>baselines. Yet, he didn't mention terrible predictions for the future (as

>some have done in her presence). And he really, really is excited to have

>his first CVID patient. He made her feel really special and not at all

>like

>a " sickey. " I was really impressed that each time I asked him if he had

>seen the study about.... he responded and gave me details of each one -- I

>wonder if he's been snooping in OUR ARCHIVES! Thanks again to the group

>as a whole for helping me be better informed and know what questions to

>ask.

>It looks like this guy is going to be a good fit for Katy and for me.

>

>Katy's doing the parent preview show for School House Rock Live! She's all

>excited because her Daddy and brother will get to be there. I run the

>sound

>-- so I'm not special anymore -- just Daddy and brother! She's so

>excited.

>

>

>Gotta get lunch started. Wishing all a pleasant weekend and some time to

>recuperate before another busy week.

>

>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: We took her to see the immunologist on friday and he is running

tests for cortisol level, cbc, differential,will let you know what they

conclude,

annette and alissa

>From: DaleMWeath@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Hi from Dale

>Date: Sun, 7 Nov 1999 16:20:05 EST

>

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

>

>Dear Annette, Katy has never been on inhaled steriods. She has no lung

>complications at all -- no asthma, not even a good bronchitis since we

>started IVIG. So, I can't help you there. But ask any question you wish

>--

>sorry I can't help on that one. I do know that about 6 months ago, Katy

>started bruising really badly and I took her in. Her ped was out so we saw

>another lady. She checked platelets and also some blood clotting factors.

>Apparently, bruising could be a sign of an autoimmune process that they

>were

>checking for, it could also be a reaction to medications, vitamin

>deficiency, etc. There are a lot of causes. The bruising for Katy only

>lasted for a couple of weeks. Her platelets and clotting were all fine.

>Then it has never happened again. I really suspect something in the IVIG

>set

>it off -- but of course there's no way to prove that! But because it

>disappeared, we're not pursuing it.

>

>There are several questions the doctor wanted to know if I remember

>correctly. #1 are bruises happening spontaneously? In other words can

>you

>identify what caused the bruise (bumping a chair or leaning too hard on the

>elbow) or are bruises just happening spontaneously without cause. In

>other

>words -- is she bruising too easily, or is she spontaneously bruising? #2

>Is there fresh redness around the bruises that indicates that she is

>continuing to bruise after the initial bump or cause. #3 are there any

>little tiny bright red bumps under the skin that indicate capillaries

>breaking. #4 are there any bruises on the torso. If the answer to

>any

>of those is yes -- call your doctor. Don't just " wait and see. "

>

>Hope that helps.

>

>Ursula, only you can decide whether Macey should or shouldn't go to

>school.

>What are her trough levels lately? How is she doing generally? As long as

>her trough levels are good, a few days aren't going to make a lot of

>difference. Does she visibly droop when she's needing IVIG? On the other

>hand, if she's running right on the edge of infection, everybody in the

>class

>is coughing and crouping, she's feeling tired and run-down and her trough

>levels are low -- you know the drill.

>I don't think you'll find any one rule that says you shouldn't send them to

>school if they are late for IVIG. It all depends...... Don't you just

>love

>being the mother!!!!!

>

>Autumn, we're praying and my Bible study class this morning agreed to pray

>all week for you and your hubby, for and the doctors, and for Mark.

>God bless you as you journey through this week one day at a time, one step

>at

>a time.

>

>Wishing all a worshipful Sunday.

>

>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 and others who are praying for and our family....

Thank you all so much for your continued support and prayers. I am really

starting to feel the affects of what this week brings. We have been spending

lots of time with the boys just having fun. is still under the weather

with this latest infection. His doctor phoned us this evening (Sunday

yet...) and decided that it would be best if had another PFT on Tuesday

morning the day prior to surgery. I can not imagine that it will be that

great...he is not that great when he is well. Lets keep our fingers crossed

that all goes well.

I will keep you all updated.

Thanks again,

Autumn

[Guest guest]

Dear Autumn: We continue to keep you in our prayers and and send positive

thoughts to you and your family,God Bless and take care,

annette and alissa

>From: Autti@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: Hi from Dale

>Date: Sun, 7 Nov 1999 22:43:05 EST

>

>Dear Dale and others who are praying for and our family....

>

>Thank you all so much for your continued support and prayers. I am really

>starting to feel the affects of what this week brings. We have been

>spending

>lots of time with the boys just having fun. is still under the

>weather

>with this latest infection. His doctor phoned us this evening (Sunday

>yet...) and decided that it would be best if had another PFT on

>Tuesday

>morning the day prior to surgery. I can not imagine that it will be that

>great...he is not that great when he is well. Lets keep our fingers

>crossed

>that all goes well.

>

>I will keep you all updated.

>

>Thanks again,

>

>Autumn

>

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

>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,

does get the red rashes too, but I was referring to physically swelling.

He gets lumps on his hands, feet, forearms, forehead, etc., etc., etc. The

lumps feel hard, almost like bone. Thanks for writing back. It helps to

know that there is someone out there listening.

Lee

[Guest guest]

Dale, Onelist has recently updated their site and has a very useful archives

search engine now. Go to www.onelist.com and log in. It will then list all

the Onelist email lists that you belong to. Pick the PedPID one. Then

click index. This will give you a list of all the digest. Also on this

screen will be an index search engine. Hope that helps.

Ursula - & Macey (4 yr old w/CVID) mom

Hi from Dale

From: DaleMWeath@...

from Dale, Mom to Katy, age 15, CVID

Anyone-- you have referred to the Archive and I supposed it was a collection

of past info. How do I access that? I would like to look over the info on

the Rinoflow machine -- or have it re-sent. Katy said she might -- that's

just a maybe -- be willing to look into that to help her clear her sinuses.

Thanks

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]

Annette - how did Alissa's lab results come out?

Ursula Holleman

Re: Hi from Dale

DEar Dale: We took her to see the immunologist on friday and he is running

tests for cortisol level, cbc, differential,will let you know what they

conclude,

annette and alissa

[Guest guest]

Dear Ursula: The lab lost them and the immunologist is very upset and we are

giving them till monday afternoon to locate them or I have to take her back

to be redrawn. Will let you know as soon as they get in.

How is Macey feeling? Is she making out her Santa list yet, we send her a

big hug, take care and hope you are feeing better,

God Bless,

annette and alissa

>

>Reply-To: PedPIDonelist

>To: <PedPIDonelist>

>Subject: RE: Hi from Dale

>Date: Thu, 11 Nov 1999 23:29:39 -0500

>

>Annette - how did Alissa's lab results come out?

>

>Ursula Holleman

>

> Re: Hi from Dale

>

>

>

>DEar Dale: We took her to see the immunologist on friday and he is running

>tests for cortisol level, cbc, differential,will let you know what they

>conclude,

>annette and alissa

>

>

>

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

>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 thanks. They also have a web site so I've been skimming through there.

Thanks for the information. The PedPID site is down right now but should be

back up by tomorrow. That doesn't affect the email list though since it's

run by Onelist. By all means give any and all info about the site to

whomever. Glad you had a productive meeting. We hope to get the Georgia

chapter started in January. Hope is feeling better.

Ursula Holleman

from Dale, Mom to Katy, 15, CVID

Ursula, As far as I know they are the same thing -- inflammatory bowel and

irritable bowel. There's a group that might be informative for all of you

that are dealing with this -- they really helped me out when Katy was at her

worst in malabsorption. That's the " International Foundation for Functional

Gastrointestinal Disorders. " They have a quarterly newsletter that has

really helped educate me.

You can write to them at P.O. Box 17864, Milwaukee, WI 53217, or call Toll

Free . They cover all kinds of GI problems, but really focused

on IBS.

I met with IDF group yesterday and again found a couple of families that

needed the PedPID group. Hope they will join us soon. Bonnie Doak, our

IDF

president, wants to put the PedPID web page in the IDF newsletter. Ursula

-- is that okay? I really want people to find out about the group -- but I

don't want to invite a bunch of other people unless it's okay with the group

-- and especially with you. Let me know.

In His service,

Dale

[Guest guest]

Hi Dale,

Just went through the mail. The rash that your

daughter has maybe a staph infection. Are they red

with a little white center? Try bactroban. This

usually helps . She gets them all the time when

her ANC is low and when she is starting to come down

with something. Keep it in check though. ended

up with cellulitis from it not clearing up.

=====

and

(congential neutropenia, hypogammaglobulinemia, chronic sinusitis and

leukopenia)

mom to Evan 6, 4 and Abby Rose 2

[Guest guest]

Dear Dale: Thank you for the advice and we are seeing the therapist that is

treating alissa. She gave the same advice and you are right when you get so

involved with everything that is happening around your child and the care

and insurance garbage your marriage takes a turn behind everything else.

That is exactly what has happened to us, it is funny because when his orders

were cancelled to Korea we had to look at all that has happened with our

marriage. And you are also right that going it alone is more difficult

because I did it with my other daughter who turns twenty-one in two weeks.

Alissa illness kind of hit home also, she will be with us a long time and

will need both of us not just one parent. The therapist told us yesterday

in order for a chronically ill child to remain healthier in her evironment

she needs a healthy family to be around. Thanks for sharing and again you

have a lot of faith and grace. I think the other problem is that I fight

everything and if I cannot fix it, I get frustrated. God Bless,

annette and alissa

>From: DaleMWeath@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Hi from Dale

>Date: Mon, 15 Nov 1999 14:39:01 EST

>

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

>

>Ursula, sorry I miss called the differences in irritable bowel and

>inflammed

>bowel. I only read the newsletter for the part that I need and have never

>focused on those. Katy's digestive problems don't fit either description,

>although her ped is absolutely sure she has IBS. That's a different story.

>

> and Lorin, welcome to the group. You might as well learn early on

>that immune deficiencies come in several different flavors. Some are

>acute,

>some are long term aggravating chronic. That's where my daughter is.

>She's

>never been hospitalized for anything serious -- but she's almost always

>sick

>or borderline with something. Right now we're piggy-backing viruses. She

>catches a new one before the old one leaves. And anything that takes me 3

>days to get over -- it takes her 2 or 3 weeks. Last night she was

>covered

>with a new pimply looking rash all over her torso. We still haven't solved

>the headaches, but the digestive stuff is doing much better since we

>started

>replacing the IgG. Some of the things that have helped with the

>digestion

>is: removing all lactose from her diet including everything that contains

>whey or any form of lactose. Reducing fructose intake tremendously.

>Cutting out anything with high fat content. We very seldom eat out and we

>pack her food and water to take everywhere she goes - sleepovers, etc.

>Hope that helps.

>

>Annette, I know that Allissa is your world right now, but you also deserve

>to

>have a marriage and a relationship with your husband. I get so

>discouraged

>at times and I feel like I'm pulling through quicksand even though I've got

>a

>great husband who really chips in 100% (okay, maybe only 95!). There have

>been times this last 4 years when I've just wanted him to go away and let

>me

>take care of her and not expect me to be a wife. But I've figured out

>what

>causes those feelings. It's when I've been so focused on her that I've

>forgotten that I have a life to lead too. That's when we start making

>plans

>to get out of the house. I don't know whether you can leave Allissa alone

>or

>not, but and I just about a month ago realized that our relationship

>was slipping again. So, we started walking every evening between 9 and 10.

> is usually home, or we leave her alone. When we first started

>walking, we had drifted so far apart, I didn't think we'd have anything to

>talk about, but, now I look forward to that time with my husband, away from

>my daughter. As we walk, I'm getting reacquainted with that man I fell in

>love with 27 years ago. I've learned some of his fears and worries and

>he's

>learned about some of mine. I've discovered how alone he feels as he

>juggles

>job worries that I used to share, but now he doesn't want to burden me.

>And

>we're growing again. I've found this cycle happens over and over and over

>in marriages. Regardless of whether you've got a sick child -- marriage is

>a

>journey, there's high points and there's low points. I have a personal

>theory that a marriage is totally different every 7 years because we grow

>and

>change and become. If you wake up and discover you're married to a person

>you don't recognize or understand, that's your signal to get to work.

>Marriage, thank goodness, doesn't stay stagnant. You're husband is not the

>same kid you married and neither are you. A sick child changes the woman

>more than it does the man, although in our marriage, has had the

>harder

>time because he wants so badly to fix what's broken and he can't. You

>really have a choice in whether to get reacquainted with this man you fell

>in

>love with and find out who he is, or to live life alone. Living alone may

>seem easier, but in the long run, it will have very serious consequences to

>both of you. In my experience, fussing and fighting is the signal that

>you

>both still care enough to work on it. It's when there's no use in fighting

>that there's no hope. I know that you just found a therapist for Allissa

>--

>call him and ask if he can recommend a counselor for the two of you.

>Annette, I don't know you or your circumstances, but I know that having a

>sick child has sometimes thrown my judgement off. I just want to hold her

>and be there for her and not let anyone else into our world -- and that's

>not

>healthy for Katy. The best thing a woman can do for a child is to love

>his/her Dad. Now, I'm not trying to cover abusive relationships here --

>just those that have drifted apart because of new focuses. It's sorta

>funny, but in many ways I'm the one getting left out of and Katy's

>relationship. I go to bed early and leave the two of them up watching Star

>Trek reruns. Sometimes I'm the one getting jealous! I'll be praying for

>you, Annette. May God grant you wisdom to walk this journey. May God

>supply

>you with His guidance and direction.

>

>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 Lee: Thanks for the vote of confidence, in what you said I think that

like potty training maybe my daughter will take responsibility when she is

ready to. Instead of fighting her I think I will try what we did with the

above problem, let her do it on her own time, she is a very stubborn

childk!!!!!! Which is good it has kept her fighting all along. Take care,

Is better today? I asked Dr Khamre, the doc I work for in Urgent care

about the swelling and the rash and he asked if he had a vacular work up to

see what was going on? Take care and hope your day is peaceful,

annette and alissa

>From: Kmeyer1020@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Re: Hi from Dale

>Date: Wed, 17 Nov 1999 00:58:27 EST

>

>Dear Annette,

>

>I know how difficult it is to guide the children we love so very much into

>accepting responsibility. was around 12 or 13 before he ever began to

>take any responsibility for his meds. With a lot of love, patience and

>through the help of a good therapist he finally did take the responsibility

>though. I think that sometimes they feel afraid and they desperately need

>to

>know that their parent(s) are there for them and sometimes taking control

>of

>the situation with the meds makes them feel a little safer. I think that I

>am wording this poorly. Anyway, everything that I have read which you have

>written leads to the fact that you are a terrific parent. Your child is

>very

>lucky to have you. Take care.

>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.

><< text3.html >>

[Guest guest]

Dear Annette,

Thanks for the info. No, I don't think that has ever had a vacular work

up, which is surprising because I think that he has had every other kind of

workup imaginable. I agree with you completely in that children take on

responsibility little by little as they feel they are ready to, especially

for kids who have had extra battles to deal with in life. We allowed

the time he needed to take on responsibility (and it did take awhile and we

still have a ways to go, but that's okay). Take care.

Lee

[Guest guest]

Dale,

We've had good luck w/tea tree oil shampoo, avail at the health food stores.....

At 04:37 PM 11/22/99 EST, you wrote:

>From: DaleMWeath@...

>

>from Dale, mom to Katy, 15, CVID

>

>Annette, I know NOTHING about cortisol levels. What is it?

>

>Oh, Katy's mad at all of you --- she washed her hair in Denorex shampoo -

>and it smells like ant killer!!! She had dry patches all over her scalp --

>it didn't really help and she HATES THE SMELL! We'll keep looking for

>something that works AND appeals to the teenagers sense of smell!!!

>

>Gotta get busy.

>

>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]

Dale: Cortisol controls everything it is hydrocortisone it originates in the

pituitary. Ask Katy if she has tried teatree shampoo from or

Danderest from Nexxus they smell fresh and clean and not like a medicine

head. Also if it is just dryness, biolage hydration shampoo always clears

our winter dandruff up here at home,

take care,

annette and alissa

>From: DaleMWeath@...

>Reply-To: PedPIDonelist

>To: PedPIDonelist

>Subject: Hi from Dale

>Date: Mon, 22 Nov 1999 16:37:08 EST

>

>from Dale, mom to Katy, 15, CVID

>

>Annette, I know NOTHING about cortisol levels. What is it?

>

>Oh, Katy's mad at all of you --- she washed her hair in Denorex shampoo -

>and it smells like ant killer!!! She had dry patches all over her scalp

>--

>it didn't really help and she HATES THE SMELL! We'll keep looking for

>something that works AND appeals to the teenagers sense of smell!!!

>

>Gotta get busy.

>

>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]

cvs carries a generic neutrogenia t-gel that is about 1/3 the price and works

the same.

sandra

[Guest guest]

Hi Dale,

Sorry if I scared you, anyone for that matter, I was just in need of someone

to go to my new web site chat center and shat with me to see if it worked.

It does by the way.

Anyhow, all is fine here. We go for IVIg in the morning. I think it will

go well as usual. is cutting in tooth #10 right now (bottom left

molar). He is handling it pretty well, just needed some Motrin before bed.

Hope all of your pumpkins are doing well this evening!!

;o)

Hi from Dale

>From: DaleMWeath@...

>

>from Dale, Mom to Katy, CVID

>

>, are you okay? What do you need? I'm praying for you and for

whatever

>has come up. Let me know.

>

>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]

from Dale, Mom to Katy, CVID, age 15

Katy's still hanging in there and keeps going. She won't look me in the eye,

though, and that means she's pushing way beyond her limits -- but won't quit.

With the Christmas season upon us, she's so busy with socials and

activities. She's helping with the children's choir concert at church

tonight. Oh, well..... it's that fighting spirit that keeps our kids going.

Capri -- I can imagine that is upset. His body has been violated

without warning and without preparation. At five, he's just beginning to

take charge of himself emotionally and then this happens without adequate

preparation and I imagine you've got a really angry little trouper. One

thing that helped Katy was when I quit saying " oh, please don't be angry. It

will just make you sick. Life is like that, etc. " and starting saying, " I

know you're angry. I'm angry, too. Let's be angry together. " Then she

would know that anger is an appropriate emotion if you handle it right. It

also keeps the door open for him to express feelings that you may not like --

but that he needs to express. When Katy's angry, she wants her anger

pillow. That means that (her older brother) holds a pillow and she

bashes it (and sometimes him) until the anger settles down a little. When we

accepted that anger is part of this terrible disease, we began to get a

handle on things. Emotionally if you suppress anger -- you have to also

suppress joy. Teaching him acceptable ways of dealing with his feelings is

really important so that you can enjoy the good times. God bless you on

your journey. Hope that helps.

, how about an update on Abbey? What's the pt for? Is this a result of

the meningitis?

In His service,

Dale