Re: Misc. responses and update

[Guest guest]

,

Sounds like you have had a rough week. I hope and pray that 's heart

is OK. That little guy does not need any more problems and he has already

had a lifetime of them. I will keep very positive thoughts for all of you

)

Couple of things....

On the allergy issue. While it is often times very difficult to pinpoint an

exact allergy, it is not difficult to pinpoint allergy...let me explain. A

simple nasal smear has the capability of showing eosinophils (the cells that

are associated with allergy). You do not need that much on the slide to

prove or disprove allergy. showed an abundance of eosinophils on his

nasal smears long before he tested positive to specific allergens. This

way, at least in some of the cases, one would know if that persistent runny

nose was allergy or not.

On the issue of getting sick after leaving the PED's office..BEEN THERE,

DONE THAT, LOL. Our Ped took it upon herself to establish the following

guidelines. First off, she has told me on two separate occasions that I am

to inform the girls at the desk that we are there so that we can be put into

a room immediately and thus limit exposure in the waiting room. In fact,

she has asked that we never enter the waiting room at all. Last week when

Mark was there for yet another infection, she told me that she cringed when

she saw his name on the schedule because of all the communicable things that

are going around, including RSV (Mark had RSV pneumonia two years ago that

was pretty bad). She told me to call her before coming in the next time so

that we do not expose Mark to all the other children so that she can make

arrangements for him to be seen before the office opens up to the rest of

the patient population. She is concerned not only because he has a PID, but

also because he is on Methotrexate ( a chemo drug) and has been on daily

steroids for over one year now, both which suppress the immune system even

more making Mark more vulnerable. We do not keep Mark in isolation (by

personal choice) but we do take precautions at the PED's office and in our

home by not allowing sick people over. Certain situations are out of our

control and we try to let Mark live as normal a life as possible. Strict

isolation, in my opinion could cause other problems in other areas of

development causing social issues (I guess this has to be a personal

decision on the part of each parent with no right or wrong answers). My

heart truly goes out to those that have children with SCID and cancer or

other serious illnesses who truly do not have a choice. We are concerned

with the fact that Mark is going to be on a higher doses of Methotrexate as

the months progress and we do have concerns about this. I guess we will

cross that bridge when we get there.

Perhaps, some of you might ask if you can be put into a room right away and

thus limit exposure to other things when at the doctor's office. Setting up

a plan ahead of time is sometimes half the battle.

Autumn (Mom to Mark Cd5-Cd19 PID and )

Misc. responses and update

>

>

> > Autumn: I have had personal experience with some form of a mold making

my

> > children ill. When we first moved down here, we rented a house that had

a

> > mold problem in the air conditioning/heating system. we were unaware of

> it

> > until we had the system checked--landlords refused to do it for us.

When

> > the condenser was opened, about an inch of thick, black, slimy mold was

> > found. It was all over the entire ventilation system. We were unaware

> that

> > this could happen and had only been changing the filter on the unit

every

> > month. We lived in that house for 3 years and the boys allergist and

ped

> > feel that the house itself was part of what lead to having so many

> > pneumonia's and both the boys having such hard to treat and chronic

asthma

> > problems. Needless to say, we soon left that house and were able to but

> the

> > home we now have.

> >

> > The hard part of this is that neither of the boys have tested positive

to

> > any molds or mildews, even though we know that the allergies are there

and

> > are very real. is normally the one who has the worst

illnesses--by

> > worst I mean the harder ones to deal with--and he is our allergic

child.

> > He will be starting the immunotherapy shots as soon as the serum is

mixed

> > for him, but unfortunately it is not soon enough to help him this year

> with

> > the tree pollens he's allergic too. Some of those are already in full

> > bloom! has no confirmed allergies, yet he has been classified--if

> you

> > can actually call it that!--as having severe acute/chronic allergic

> > rhinitis. He has severe allergy symptoms at least 25 days out of each

30

> > even while on medications to help ease the symptoms. However, as I

stated

> a

> > few weeks ago, the only thing that showed up positive on him--out of

over

> 60

> > pricks--was the histamine control.

> >

> > Also along the lines of allergies...someone mentioned that their child

> only

> > tested positive to cat and cockroach. and both have these

> > allergies and this is the explanation I was given about them. First

off,

> I

> > was upset about the cockroach because I keep a very clean house--my

> husband

> > calls me retentive about it--and I hated to think that it was my fault.

> We

> > also have not had a cat since was about 9 months old. The

allergist

> > explained to me that the cat allergy is to a protein in the cat's

> > saliva--since cats are constantly grooming themselves and shedding their

> > fur, the fur and therefore the protein gets mixed into the soil, grass,

> > dirt, and air. The same applies to the cockroach droppings--which is

> > actually what the test is testing for. We have palmetto bugs here--part

> of

> > the cockroach family--that are outside everywhere. They live in the

> ground

> > so overtime the dirt is disturbed, we may be disturbing the droppings

and

> > bringing them up into the air as dust.

> >

> > Regarding the genetic issues that have been raised...We were told that

> both

> > 's cancer and his PID are caused by a genetic fluke in nature. No,

> no

> > one can tell us if his cancer was caused by the dysgammaglobulinemia or

if

> > the dysgammaglobulinemia caused the cancer, but we do know that the 2 or

> > loosely related because both are humeral defects in that he has poorly

> > functioning B-cells. The chances of our other kids having these

problems

> > are almost non-existent while the chances for allergies and asthma was

> given

> > a 90% for before we even had her. Since we know that allergies

and

> > asthma have some genetic influence, we are sure has allergies like

> his

> > 2 siblings do, but he just hasn't been able to test positive to them

> because

> > of the " holes in his immune system " .

> >

> > We also went the route that many have written in about with the numbers

> > verses the illnesses for starting IVIG. Please remember that 's

> story

> > is a lot different from most because he had cancer and 3 years of chemo

> and

> > was started on IVIG during chemotherapy originally. When he had been

off

> > his chemo for 6 months, his immunologist did a trial run of him off

IVIG.

> > The numbers weren't bad at first, dropped after about 6 months off but

the

> > infection rate increased during this time. So back onto the IVIG. We

> have

> > done these trial runs on and off for several years. The last time

> was

> > off the IVIG, his numbers at 3 months were low-normal, at 6 months they

> > were low but the infection rate wasn't bad. Only a few infections at

that

> > time. However, from 6 months -12 months off, his infection rate

increased

> > significantly as well as a drastic drop in some of his numbers. He has

> now

> > been back on the IVIG for almost a year and the infection rate seems to

> > FINALLY be slowing down. So, our immunologists is looking not only at

the

> > numbers--which he has told me he really only uses as a guideline--but

also

> > at the rate of infections, what style of infections and how

> responded

> > to the treatment of the infections.

> >

> > I wanted to say this about the isolation issues...We HAD to isolate

> > during his cancer treatments, but we never went to any of the extremes

> that

> > a bone marrow transplant patient has to deal with. What we did was kept

> him

> > out of daycare--which we were doing anyway and watched what time of day

> and

> > the amount of persons he would be able to come into contact with if we

> went

> > somewhere. We went to the supermarket first thing in the morning, we

went

> > to the park before the other kids were there. We became experts at

> washing

> > our hands and we encouraged to be active. If we wanted to go

> > someplace as a family and there were going to be a lot of people around,

> > wore his " isolation mask " and was fine. That was while on chemo

and

> > we had no other choices.

> >

> > I've read where some in the group are isolating the kids and wondering

> about

> > infections that are still happening...here is a thought. I had never

had

> > more colds and illnesses than when I worked as a bank teller. People

all

> > over will lick their fingers to turn a page in a book or to count

> something

> > out--like money. I then would handle the money and rub my face and then

I

> > got sick. I have known clerks who have said the same thing...they get

> sick

> > easier because of the amount of money the handle and the fact that the

> money

> > has germs of some sort on it. So, we handle the money, then play or

pick

> > up our children and we may have just passed along some common virus or

> > something to the child. Also, parents of school-age kids work with

> > ourselves or our spouses and the we bring that along home to the kids.

> > Lastly, if you have to take the kid to the doctor, it really may not

help

> > alot if you go straight to an exam room if the child in there before you

> was

> > sick and the room hasn't had enough time to really let the air just kill

> off

> > the germs. It's nice not to have to wait in a waiting room with a bunch

> of

> > other sick kids, but if you go into an exam room after on of those sick

> > kids, how much protection is it really?My kids always seem to get sick

> about

> > 5-10 days after seeing a doctor! If we have to take in for a sick

> > visit, I try to get the first appointment of the day--I usually call the

> > afternoon before to schedule it and the office is always ready to get us

> in

> > first thing before others start arriving--so we can avoid this and then

we

> > are the guilty ones of " passig it on on the bug " . Just some thoughts.

> >

> > Now the update... had his echo and although his numbers are still

> > within normal range, there is concern because the numbers still indicate

a

> > lowered function in his left ventricle. He is on the " lower limits " and

> > when puberty hits him along with the growth spurts of it, we may be in

for

> > some unpleasant and permanent problems. We just have to sit tight and

> wait

> > to see what happens, but it seems to be the consensus that there is

damage

> > to his heart and now we just have to see how much and when.

> > I'm thinking about the kids who are sick right now and hoping that they

> all

> > get feeling better soon. Spring is here in Florida--the trees are in

> bloom

> > and so is 's allergies! Just think, 3 more months of his " bad "

> allergy

> > season!! Lovely! Need to run.

> >

> > --mom to ,8, dysgammaglobulinemia, Leukemia-in remission;

> ,9,

> > allergies, asthma; and ,2, allergies.

> >

> >

> >

> >

> > 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.

>