Ursula

[Guest guest]

Ursula,

I am so sorry to hear of the news that you received while at Duke. I am sure

that you were hoping for better news. It is quite disheartening to hear that

Macey has Dymelination (sp?) and the possibility of MS. My heart goes out to

you and your family. I hope that the next visit will prove to be more

promising to you and your family. I know that you are in good hands with Dr.

Myers and that she will help you guys figure this all out. My best to you

and your family.

Warmly,

Autumn

[Guest guest]

*I sent this last night, but it never came through on my PedPID mail, so I'm

resending it.

Ursula, does Macey receive PT and OT services under an IEP? Here in PA, a

child needs a " diagnosis " within the DSM-IV to qualify for those services,

and the diagnosis has to include a greater than 25% delay in skill

development. I've become friends with a mom whose child is in a Headstart

program, and although it's clear that her daughter has some delays, the

school district won't accept SID (Sensory Integration Disorder) as a

diagnosis since it's not in the DSM. Does your school district accept SID as

a diagnosis for services? Or is Macey provided services under a different

diagnosis? I'd like to help this mom get some OT for her child, but I don't

know anyone whose been able to get services using a SID diagnosis. Thanks

for any information.

Debbie, Mom to , SCID post BMT, GERD w/hiatal hernia, IBD (Crohn's

Disease), CP from brain injury, CVI, developmental delays, G-tube,

non-verbal, epilepsy (hopefully controlled with VNS)

[Guest guest]

Macey has a 15 minute per month OT consult to check progress and for the OT

and her Pre-K teacher to go over what classroom activities are being used

(shaving cream, therapuddy, hands-in-the-beans). Last year when OT

evaluated her she qualified for OT services based on her delay (more than 2

standard deviations I was told) but just barely. Because Macey was on

homebound services the OT department said they didn't have the resources or

the equipment to come out to the house. They gave her homebound teacher a

program to follow and she was already receiving Speech therapy on the IEP so

they also check on something's. Macey's private OT, and her school

OT, Joanne are constantly on the phone and going over what's being tried and

used during our weekly private sessions. The big thought right now is that

if her motor skills decline or can't seem to keep progressing then the

school OT will take over alot of the " physical " part of therapy, the actual

OT therapy. Then since our private OT is SI certified she can focus on just

SI therapy. We do alot at home too. I'll be interested to hear Thursday at

the next ACT meeting what Joanne thinks of the new report.

But to actually answer your question, Macey's IEP OT services come under

Other Health Impaired and I know the other health impaired is from the CVID,

DI and asthma. She is still technically listed under special ed but goes to

general ed classes. But remember we've had this discussion before on the

SCID list about how peculiar our school system is about how they define

special ed and what services are offered. LOL

How is King 's tummy? Any improvement? I hope he's feeling better.

Ursula Holleman uahollem@...

and Macey's mom (4 yr. old with CVID, asthma, sinus disease, GERD,

kidney reflux, Sensory Integration Disorder, Diabetes Insipidus)

http://www.pedpid.com

http://www.onelist.com/community/PedPID

[Guest guest]

Ursula:

So sorry to hear about your girls. I know the chicken pox are so

uncomfortable. Its good to hear that the fever has been gone the last 48

Hours.

Poor Macey with another sinus infection. Has Macey had the chicken pox

already or is that a concern at this point for her too? You must be

exhausted! Please try and get a little rest for you too! Will keep you all

in our prayers.

Tina

Mike 14, CVID, JRA, Fibromyalgia, and EBV

[Guest guest]

Tina - Macey hasn't had the chicken pox but I found out this morning that

when they draw labs next time they will order an antibody level to the

chicken pox. This way we will see if the vaccination she had pre-diagnosis

stuck around or if she has antibodies from IVIG or if she is low and has

little protection. Thanks for the prayers.

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:

So sorry that Macey is struggling with sinus too. We were given Zithromax

twice for consecutively, zyrtec, and rhinocort nasal spray.

usually winds up on antibiotics for a month before an infection totally goes

away. I know they use Biaxin for Respiratory infections, couldn't hurt to

ask if it would help.....My daughter has been on Propulsid for several

years and her GI doc feels strongly that she needs to stay on it. We had her

evaluated for cardiac problems and there were none so we are still on it.

How are Macey's joints? I hope Macey feels better soon! How is Mommy

feeling these days? Are you ok?

Tina

[Guest guest]

Since we have tried the usual antibiotics for the sinus infection it would

be time to resort to a next generation of drugs. but again, we'd have to

see more symptoms and not just the gunk with color or something. We've

never used Zithromax with macey's sinuses so it wouldn't surprise me that it

wasn't meant for them. Macey use the Vancenase pockethaler which was a dry

type of device. they stopped making it and only make the AQ which she

doesn't tolerate very well. I'm not sure reflux is completely the culprit

with her throat and the drugs do have her usual reflux symptoms under

control so we're stalled in that area. She was on Naproxen for a NSAID but

the Rheumatologist took her off of it last week to see how she does for a

couple of weeks. The Pepcid helps offset some of the stomach effects I've

heard of because in the 5 weeks macey did take it she had no GI side

effects. Macey's knees and ankles are affected also. The EBV titers that

they draw can have a certain ratio or level. supposedly of the 5 different

EBV levels in the serology test, one or two levels showing up at a certain

range indicate an " active " virus. plus symptoms still being there. EBV

testing on IVIG patients is much more involved and needs PCR capabilities by

the lab. had/has a recent EBV episode and her docs found the right

lab to run the test so that they didn't have to worry about a false-positive

caused by the IVIG. I have a colonoscopy in December, not looking forward

to it. last year I more or less over prepped and thus ended up dehydrated,

needing 2 liters of fluid just to get started and was on potassium

supplements for a week afterwards. I took a new type of prep which came in

a pill form. hopefully this year will go alot better. my aunt was

diagnosed with colon cancer this year and had her colon and small intestine

completely removed. beautiful woman with a nasty little ostomy. they've

given her maybe 2 yrs more. anyway enough about that.

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 and Tina,

Quick reply, as I have to get some sleep! Long couple of days....

Zithromax and Biaxin are almost identical... in what they treat, how

they work, the things that are sensitive or resistant to them (in fact,

it's not unusual to get " cross-resistance " - when you're resistant to

one, you get resistant to the other - because the abx are acting to

inhibit the same point in the bacterial replication process, and when

the bacteria mutate to overcome that antibiotic action, it's mutating

the same spot the other antibiotic works on, as well). They're both

macrolides, which means they're both in the same generation of

Erythromycin derivatives. They came out within a few months of each

other, and other than past experience (good or bad), I can't see picking

one over the other for any one particular infection (unless you have

right in front of you on a culture and sensitivity that it's killed by

one but not the other). The reason for choosing one over the other is

usually simply a matter of preference - as far as I know, one's not

really considered a " bigger " gun than the other. It's just that some

people's GI tracts tolerate one better than the other, and some doctors

develop a preference for one over the other because of their own or

their patients' responses to the meds. In a few cases, if people are

allergic to the red dye in Zithro, they choose the Biaxin b/c it isn't

red. I see a lot of docs picking Zithromax b/c it's simpler to

administer and doesn't have the weird metallic taste associated with it.

The once a day dosing is really nice, particularly with a med that

should be taken with food. But in someone who will be conscientious

about giving the med on time, Biaxin is a perfectly acceptable drug to

use if there are too many GI effects with Zithro. Personally, I use

Biaxin -- because " if it ain't broke, don't fix it " (I've always taken

Biaxin, because it came out first, and I've never had a problem with

it). If I'd tried one of those and it didn't work, I wouldn't let them

put me on the other, because there's very little that one can treat that

the other can't, and it would be very close to giving the same

antibiotic twice. I hope I explained that okay...

About EBV -- there are a number of ways to test for it.... standard

" mono spot " office tests and the usual blood tests measure IgG and IgM

antibodies against EBV. In someone with a healthy immune system, you

expect to see the EBV-specific IgM rise in the first weeks after

exposure/infection, then fall again as the IgM is converted to

EBV-specific IgG. So a transient rise in EBV-IgM (with later normal

count) often signals exposure and possible infection. A threefold or

fourfold rise in EBV-IgG is usually required to make a true diagnosis,

though, because that's expected to happen a couple of weeks into the

disease and persist. That IgG level will then probably always remain

somewhat elevated, because your immune system did exactly what it was

supposed to do -- it converted the short term (IgM) response into a long

term (IgG) response (memory). That way, you have lots of EBV-specific

IgG hanging around to kill off anything in the future without that lag

period of a few weeks. Very nice model. Unfortunately, how many

people get their IgG against EBV drawn at baseline? So it's really hard

to know if or when there's been a multi-fold increase in the IgG, and

therefore difficult to diagnose EBV. The ongoing elevation of IgM

(EBV-specific) can be one piece of evidence for a diagnosis of " chronic

EBV. " But, again, all of this presumes an intact and functioning immune

system. And looking for the multi-fold rise in IgG isn't going to mean

anything in someone with an IgG deficiency (whether he is or isn't on

IVIG. So in people with PIDs or other defects of immune response, often

the best way to test for it is to look for the true viral genome hanging

out in lymphocytes, using a PCR test (a fancy test which replicates

pieces of DNA or RNA repeatedly, until there's enough to sample... then

figures out if that sample contains the sequences you're looking for).

This is a more complex test, and it generally requires an academic med

center that has some expertise in studying viruses and using them in the

experimental context... local hospitals probably will know very little

about the process and may not even have the ability to run a PCR for the

EBV genome. So, the key is that the original tests all screened for the

immune response to EBV. Now, they're realizing that may not work in

some sub-populations (like us), and the priority now is to figure out

the best ways of identifying the illness without using the most common

and accepted tests. Oops - nearly forgot - occasionally you'll see an

elevated monocyte count on a CBC differential (hence the name

'mononucleosis')... this is not enough to make a diagnosis, but it may

just be another piece of evidence, if this is true in light of a larger

clinical picture pointing toward mono. I have a case study of

" classic " chronic mono (to the extent that docs believe in it and will

actually call it that -- some won't), and when I find it, I'll post the

relevant info. It may be at school, but if I have it here, I'll post

it.

I hope that helps a bit... for the life of me, I cannot remember the

name of that PCR test, but I am sure ID docs and other immunology-minded

guys will be able to point you in the correct direction.

Let me know if I've completely messed this up.... it's late and I'm

tired! :-)

'night!

PS: Urs - I have gotten both of your messages, but my computer's been

less than cooperative. I have started responses to both, and compiled

them.... hopefully I'll get them to you quickly now! Sorry for the delay!

[Guest guest]

<< In May macey started having bad

stomach pain, throat pain, sinus stuff again and it was decided to try a

trial=course of Reglan/Pepcid (since during all this time Propulsid had been

taken off the market). The throat symptoms haven't gone away but the

stomach pain has so the ped says its a trade off and has kept macey on the

medicines. Macey's right wrist is swollen right now and she's having a hard

time gripping the swing chains on her swing set. >>

Ursula,

I've saved this post and reread it a million times. Sounds like several of

Macey's symptoms are similar to Jamey's.

If I understand correctly, Macey is taking both Reglan and Pepcid. Is Reglan

similar to Propulsid? Jamey had taken that many years ago when we thought

his rumination was behavior--but the Propulsid didn't control it and seemed

to give him stomach aches. Jamey takes Prilosec now and I'm wondering if I

should request a trial of Reglan with it?

Does Macey tell you what is going on in her throat? Jamey arches his neck

way back and holds his breath. His doctor said this is common in severe GERD

patients. Because of all Jamey's behaviors, we haven't tried a pH probe as

he's most likely to pull it out. Sometimes he makes a " throaty " sound when

he does this. Do you know why it is Macey has throat problems?

I know someone mentioned Celebrex to you, but I wanted to share our

experience with you. Several months ago, we were in the Doctors office and

Jamey was having a terrible fit which seemed very painful during the visit.

The Doctor observed how stiff he looked and suggested we try Celebrex. We

left the office with a few samples. When I got Jamey to the car, I gave him

a capsule. Thirty minutes later, Jamey was like a changed kid. I have never

seen anything make such a difference. Jamey takes 3 capsules a day, and if

I'm late in giving it I can always tell when it's worn off. Several kids I

know of--ranging in ages of 5-14 are taking Celebrex or Viox (sp?).

I was also wondering about Macey's sensory integration disorder. Do they

attribute this to the CVID? Jamey also has severe problems with sensory

integration.

Hope your feeling better since you posted this. I've noticed some of you

posts coming through late at night as that's when I'm usually on. Through

the years, I've developed my own sleep disorder. I can't take all the credit

though...Jamey was a big help!

Sincerely,

[Guest guest]

ratios were explained to me that if you took the blood and diluted it 81

times then you wouldn't find any more tetanus antibodies. the norm (1:2000)

means that you should be able to dilute it 2000 times before the antibody

gone.

Does that make sense?

Also on the antibody/bcell. I believe antibodies are a type of bcell. you

can produce bcells but not produce antibodies.

Owwww, my brain hurts!

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 Holleman wrote:

>

> ratios were explained to me that if you took the blood and diluted it 81

> times then you wouldn't find any more tetanus antibodies. the norm (1:2000)

> means that you should be able to dilute it 2000 times before the antibody

> gone.

>

OOPS -- sorry.... seems I just answered the question Ursula already

answered -- my mistake for not reading all the mail before answering!

:-)

>

> Also on the antibody/bcell. I believe antibodies are a type of bcell. you

> can produce bcells but not produce antibodies.

>

B cells are a type of lymphocyte (white blood cell). They are

non-specific when first produced, but when the body sees a bacteria, it

recruits a type of cell that tells the B cell exactly what it's

fighting. At that point, the B cell differentiates (matures) into a

plasma cell, which is specific for that bacteria the body just told the

B cell about. The plasma cell is activated by a T cell ( " helper " T

cell), then the plasma cell churns out antibodies against that

particular bacteria. Antibodies are just little proteins that are

directed against the bacteria... they can surround the germ and form a

coating of antibodies all around it (which tells the " clean up cells " -

macrophages - to come destroy and gobble up the bacteria). Antibodies

aren't cells themselves -- just proteins specific for bacteria. IgG is

an antibody, as is IgA, IgE, etc.... IVIG is just a bag of proteins that

are specific for various bacteria that the donors have made antibodies

against.