Update

[Guest guest]

Ursula,

Sydni's immuno said her tetnus was abnormal. What does that mean? He said

it will go up after her next shot at 18 months. She is 14 months now. Does

that cause problems? Also, She had a sinus infection and was put on

augmentin. Her ped said if it doesn't clear or comes right back, she'll need

a CT of her head(sinuses) Do you think this is a separate problem? How come

they keep saying her antibody levels are fine if she has sinus infections.

This was the first time her ears were ok.

Hope all is well,

Traci- Sydni's mom

[Guest guest]

Ursula,

Sydni's immuno said her tetnus was abnormal. What does that mean? He said

it will go up after her next shot at 18 months. She is 14 months now. Does

that cause problems? Also, She had a sinus infection and was put on

augmentin. Her ped said if it doesn't clear or comes right back, she'll need

a CT of her head(sinuses) Do you think this is a separate problem? How come

they keep saying her antibody levels are fine if she has sinus infections.

This was the first time her ears were ok.

Hope all is well,

Traci- Sydni's mom

[Guest guest]

Traci - since Sydni is so young she is just taking time to mature her immune

system and the repeated tetanus vaccinations will hopefully soon kick in.

There are umpteen million people out there with normal immune systems and

antibodies out the wazoo who get sinus infections. Take my 8 yr old

for example. We tested her system when Macey was diagnosed, it was twice

what mine was and three times her sisters. But she gets sinus infections,

so does her daddy. Sinus bacteria can just grow so nicely in that dark,

moist environment. Macey not having a Pneumococcal response just makes it

alittle harder and a little longer to clear her sinus infections.

Hope her sinuses are feeling better soon. Macey calls the CT machine the

" doughnut "

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

/group/PedPID

[Guest guest]

Traci - since Sydni is so young she is just taking time to mature her immune

system and the repeated tetanus vaccinations will hopefully soon kick in.

There are umpteen million people out there with normal immune systems and

antibodies out the wazoo who get sinus infections. Take my 8 yr old

for example. We tested her system when Macey was diagnosed, it was twice

what mine was and three times her sisters. But she gets sinus infections,

so does her daddy. Sinus bacteria can just grow so nicely in that dark,

moist environment. Macey not having a Pneumococcal response just makes it

alittle harder and a little longer to clear her sinus infections.

Hope her sinuses are feeling better soon. Macey calls the CT machine the

" doughnut "

Ursula Holleman uahollem@...

and Macey's mom (5 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

/group/PedPID

[Guest guest]

Ursula,

Should Sydni have a CT? The augmentin seems to have cleared up the stuffed

up nose and cough, but I can still hear it up there when she breaths. I'm

afraid when she stops taking it, she will start all over again(as usual!) I

still keep " missing " her ENT. I will be moving to Sarasota, FL. in august, so

I am not finding a new one here.

Thanks!!

Traci-Sydni's mom , hoping she just has sinus troubles!

[Guest guest]

Ursula,

Should Sydni have a CT? The augmentin seems to have cleared up the stuffed

up nose and cough, but I can still hear it up there when she breaths. I'm

afraid when she stops taking it, she will start all over again(as usual!) I

still keep " missing " her ENT. I will be moving to Sarasota, FL. in august, so

I am not finding a new one here.

Thanks!!

Traci-Sydni's mom , hoping she just has sinus troubles!

[Guest guest]

Ursula,

Should Sydni have a CT? The augmentin seems to have cleared up the stuffed

up nose and cough, but I can still hear it up there when she breaths. I'm

afraid when she stops taking it, she will start all over again(as usual!) I

still keep " missing " her ENT. I will be moving to Sarasota, FL. in august, so

I am not finding a new one here.

Thanks!!

Traci-Sydni's mom , hoping she just has sinus troubles!

[Guest guest]

Autumn,

We will be praying for your family and . I am so sorry he has to go thru

this.

Get some rest so that you can be strong.

We are praying,

le

[Guest guest]

Autumn,

We will be praying for your family and . I am so sorry he has to go thru

this.

Get some rest so that you can be strong.

We are praying,

le

[Guest guest]

well crud. Sign his cast for Macey.

Hows stephs breathing?

Ursula

[Guest guest]

well crud. Sign his cast for Macey.

Hows stephs breathing?

Ursula

[Guest guest]

well crud. Sign his cast for Macey.

Hows stephs breathing?

Ursula

[Guest guest]

Autumn:

I am so sorry to hear about Mark. You must be beside yourself with worry now.

I wish I lived closer and could help. I would also like to send Mark a card

if you could send me his address - I will do what I can to have cards sent to

him from our state too.

I am glad to hear that his orbit was not fractured - what a relief!

Please keep us posted after your appointment on Thursday.

Tina

Mike 15 CVID, JRA, Asthma, Pan Sinusitis

[Guest guest]

Autumn:

I am so sorry to hear about Mark. You must be beside yourself with worry now.

I wish I lived closer and could help. I would also like to send Mark a card

if you could send me his address - I will do what I can to have cards sent to

him from our state too.

I am glad to hear that his orbit was not fractured - what a relief!

Please keep us posted after your appointment on Thursday.

Tina

Mike 15 CVID, JRA, Asthma, Pan Sinusitis

[Guest guest]

Autumn:

I am so sorry to hear about Mark. You must be beside yourself with worry now.

I wish I lived closer and could help. I would also like to send Mark a card

if you could send me his address - I will do what I can to have cards sent to

him from our state too.

I am glad to hear that his orbit was not fractured - what a relief!

Please keep us posted after your appointment on Thursday.

Tina

Mike 15 CVID, JRA, Asthma, Pan Sinusitis

[Guest guest]

Autumn,

Mark's on my list to mail his card tomorrow! I hope it helps cheer him up

some.

I know that you got some good news--Praise God! I'm so sorry about the

weight loss. Can you please tell me what TPN is (sorry for my ignorance)?

What does this mean for Mark in the long run?

I'm praying for you--have you considered respite care for yourself? You

definitely need some down time also.

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan Avery, 2 months

>

>Reply-To: PedPID

>To: <PedPID >

>Subject: Update

>Date: Tue, 17 Jul 2001 19:32:25 -0400

>

>HI everyone,

>

>

>Thanks to all those that have asked about us.

>Sorry for taking so long before responding. Things have been so hectic

>here.

>

>~Yes, please feel free to send a card. Most of the cards will be

>mailed out tomorrow and we are really hoping that this is going to be a

>bright spot in Mark's life.

>My plea for cards has taken off like wild fire and the media has gotten

>hold

>of this story. Mark is going to be on the front page of the newspaper as

>their feature story. When the reporter found out that Mark had a rare

>immune defect with autoimmune complications he wanted to do a feature

>story.

>The reporter has already interviewed both our local immunologist and Dr.

>Hostoffer (the discovering physician). The paper can be accessed online so

>I

>will let everyone know the details on Thursday. We were also told that

>local news cameras want to come out on the 19th or 20th so anyone from

>Michigan stayed tune to ABC, NBC, and CBS later this week.

>

>Update on Mark. The CT revealed that Mark did not fracture the orbit of

>the

>eye. The CT revealed that there was a lot of trauma to the face and eye.

>Mark's vision is fine and the headaches have subsided. That is our good

>news. The bad news is that Mark has now lost a total of 9 pounds in the

>last 6 weeks and as of today our local immune doc and GI were going to

>discuss the possibility of placing Mark on TPN. My stomach is in knots to

>say the least. I decided not to get to worried as of yet, as this has

>happened before and we were able to bypass the TPN. On an even more

>concerning note, Mark is covered with vasculitis. We see the

>rheumatologist

>on Thursday and I do not think we are going to hear good news. I guess for

>that matter, it is a good thing that the cards will be arriving then as

>Mark

>is going to be terribly upset when they tell him that he is not going to be

>coming off the Methotrexate any time soon. I will write an update to the

>group on Thursday after our appointment.

>

>My thoughts are with all those whose pumpkins are not doing so well right

>now.

>

>A warm welcome to the newcomers!!!

>

>Autumn (Mark Cd5-Cd19 PID and )

>

>

_________________________________________________________________

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[Guest guest]

Autumn,

First, I'm glad Mark liked the ribbon. I told Hayli that he received it. I

also showed and read the article on Mark to her. Now she has seen the little

boy who needed a smile! She said Mark was handsome, like a prince! Hayli

loves the whole prince/princess thing! She may be sweet, but it is your son

who is TRULY special!! God bless him for all he has to endure! We wish him

the best and that he jumps through this hurdle. You are wonderful in your out

look of your situation! I believe what you are doing is wonderful! I hope you

get some good news soon. Hugs to your family!

Take care, you are in our prayers!

Traci, Hayli, & Sydni

[Guest guest]

Autumn,

First, I'm glad Mark liked the ribbon. I told Hayli that he received it. I

also showed and read the article on Mark to her. Now she has seen the little

boy who needed a smile! She said Mark was handsome, like a prince! Hayli

loves the whole prince/princess thing! She may be sweet, but it is your son

who is TRULY special!! God bless him for all he has to endure! We wish him

the best and that he jumps through this hurdle. You are wonderful in your out

look of your situation! I believe what you are doing is wonderful! I hope you

get some good news soon. Hugs to your family!

Take care, you are in our prayers!

Traci, Hayli, & Sydni

[Guest guest]

Autumn,

I am so sorry that the prevacid isn't working. I hate that he has to take

such a massive dose of the meds, even if it's just a trial. I hate even

more that he has to endure another ph probe. I'm sure Mark was not happy

about that at all! I'll keep you in my prayers. I think you're right about

a week off--I think ALL of you need a break!

Ray, mother to Tabitha (age 5), Autumn, age 3 (IgG def., asthma,

chronic sinusitis, and allergies), and Duncan Avery, 2 months

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Autumn - I've just recently become familiar with

Methotrexate and was wondering if Remicade infusions are

similar and if Mark might benefit just as well from the

Remicade? I've been told that Remicade treatments are

by infusion once every 6-8 weeks which to me would seem

better than weekly Methotrexate injections. Just a

thought. I hope the increased meds help.

I did want to ask a question about the Methotrexate

though, do they check Mark's blood counts every so often

or just when the dose is adjusted?

--

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]

Autumn,

I am hoping for a personal email from you to tell me more specifics about

Mark's enteral feeds and if you have contacted Oley. I am sorry to hear about

the ph probe results. I hope Mark can have many fun acitivities between medical

procedures and then a whole week with NONE.

Jan

Autti wrote:

> Well as expected, Mark's 3rd pH probe results were terrible. I knew right

> away when we went to have the probe taken out and the nurse said that the

> doctor wanted to talk to us (he usually calls). When he came in the room he

> pulled out the results and showed me that Mark is literally not responding

> to the 60 mg of Prevacid AT ALL. Mark is refluxing non-stop, hundreds of

> times. For some reason the meds are not surpressing his acid production.

> So, now the GI wants to put him on 120mg of Prevacid and do a 4th pH probe

> next week to see if that works. Anyone that is on Prevacid, Prilosec, etc,

> knows that 120mg is a massive dosage (especially for a 60 lb boy), however

> the GI reassured me that it was not toxic at that amount, but that it was an

> extremely high dose. He is also very concerned about Mark's weight loss and

> increased his enteral feeds for now and we will watch what happens with

> that. One of the things that the GI is wondering, is that perhaps the

> Methotrexate is causing a toxicity in the esophagus. Rheumatology has

> mentioned this possibility last week (but she doubted that this was the

> case). We are headed out this am to get 's allergy shot and the lab

> sheet for yet MORE blood work for Mark. I will be happy when we can have

> just one week with NO medical stuff. I am going to mark my calendar for the

> week before school starts and that's, that.....my son needs to enjoy what is

> left of summer and needs a break. Thanks for letting me vent and lets all

> keep our fingers crossed that this massive amount of Prevacid works!!!!

> Thanks~

>

> Autumn (Mom to Mark Cd5-Cd19 PID and )

>

>

> 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 everyone:

I took to the GI doctor today. Hopefully next week they will be

doing an endoscopy/colonoscopy to figure out where this stomach pain is

coming from.

They will be checking for vasculitis among other things. The lab lost his

blood work so we need to go in and redo it again. Seems like its worse after

he eats. THe doctor gave us a script for Pamine? Has anyone taken that?

Anything I should watch for?

The depression was terrible this morning again. We started the Celexa, to

only 10 mgs.

Will keep you posted. Thanks for everyone's good thoughts.

Tina

Mike 15 CVID JRA Asthma, Sinusitis, GI ? and Depression

[Guest guest]

In a message dated 8/16/01 3:04:12 PM Pacific Daylight Time, IBSNICK1@...

writes:

> We started the Celix, to

> only 10 Mx.

>

I am so sorry is having such a hard time. Does he have friends that

can encourage him?

Our ped wants to start Celexa but his counselor doesn't want to him to

start it until both my husband and I can come in. They can't get us in for

two weeks. So we are in a holding pattern now.

My is spending a lot of time resting. Although he will get up and do

gym. He just says he is tired. Let me know what you think of Celexa. My

ped was very encouraging about it.

Thanks

le

11, Selective Antibody Def., IVIG for 4 years, every 3 weeks.

Syringomyelia

6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids

removed, septic hip since IVIG 0 surgery needed!

Trailing off IVIG 6/28/01

[Guest guest]

In a message dated 8/16/01 3:04:12 PM Pacific Daylight Time, IBSNICK1@...

writes:

> We started the Celix, to

> only 10 Mx.

>

I am so sorry is having such a hard time. Does he have friends that

can encourage him?

Our ped wants to start Celexa but his counselor doesn't want to him to

start it until both my husband and I can come in. They can't get us in for

two weeks. So we are in a holding pattern now.

My is spending a lot of time resting. Although he will get up and do

gym. He just says he is tired. Let me know what you think of Celexa. My

ped was very encouraging about it.

Thanks

le

11, Selective Antibody Def., IVIG for 4 years, every 3 weeks.

Syringomyelia

6 surgeries in two years before being diagnosed: 4 sinus, tonsil and adenoids

removed, septic hip since IVIG 0 surgery needed!

Trailing off IVIG 6/28/01

[Guest guest]

good to hear from you. Sorry the pump is causing him fits. Good luck to

at school. I hope he enjoys it

immensely.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, kidney reflux,

Sensory Integration Disorder, Diabetes

Insipidus)

http://maceyh.home.att.net