/Garrett

[Guest guest]

Hi,

Im Valarie,and you have just painted an exact picture of my two sons,

Donovan,6 and Brennan,4. They both have severe asthma as well. The

chronic cough sounds SO familiar......does he ever sound like he is

barking? has he ever had a bronchoscopy done? Donovan coughed until he

was 3 yrs old......all the time....eating, drinking, sleeping, etc.

all the time. Garretts back is probably hurting from coughing all the

time. Imagine how we feel when we get sick and cough a lot, and our

backs and chests hurt......and how these kids must feel to do that for

YEARS. It does make us hurt for our babies.

After we got a good pulmo, we found that both boys have airway

malacia's and this is part of what caused the cough. Another thing is

they both had severe reflux. In fact, they both had to have surgery to

stop it, meds didnt help. Also, they both had a low IgG level, that we

found when Donovan was 2 and Brennan was 8 months old. We watched it

for a couple of yrs, to see if it was the " transient " variety......its

not. Theyre number continued to drop.......and once Brennan hit 200,

he was put on IVIG therapy within weeks. This is very important!! A

nurse saying he isnt sick is.just.ignorant. If your child has been

diagnosed with hypogammaglobulinemia, then he has been diagnosed with

a primary immune disorder. Last January, my 8 yr old daughter, also

with severe asthma, was found to have low IgG, IgA, and IgM...which is

considered CVID. Based on her tests, we now believe that this is what

both boys have as well. Donovan now has normal IgG, and low IgA and

IgM. So it can fluctuate. But with Brennan, his IgG level has been

dropping since we started testing, and 200 is a dangerous number. This

means he isnt able to fight infections and needs help. With an IgG of

200, Brennan could die from an infection. IVIG is an IV replacement

of IgG. Brennan started in April, and now his IgG level is up over

600!! He has done so well, his constant cough is gone, he had one

major infection over the summer that cleared with FIVE days of zithro.

That is nothing short of a miracle for him.....a kid who regularly

took antibiotics every single day to try to fight infections and still

got them constantly anyhow. He hasnt needed steroids for his asthma

since May. This is the longest stretch of time EVER, in 4 yrs, he

hasnt been on prednisone. Both Brennan and Savannah do IVIG once a

month at our hospital. It only takes about 6 hrs for us.......a small

trade for endless months of illness and round the clock nebs.

In addition, constant bouts of lung infections can cause permanent

scarring and damage in the lungs, which is what happened with Savannah

since we werent aware of the problem soon enough.

I remember when Donovan constantly had a gray appearance, and would

sleep 13 hrs a night, only to get up and lay on the floor for another

4 or more hours coughing. It was so sad.

I have fired some drs in this long journey. In the beginning, I had

no idea what was going on. First it was, " a little reactive thing in

the lungs " then it was " mild asthma " (um, the kid would wake up in

resp. distress at least 3 times a month.....dunno if I would call that

mild--he turned BLUE)then it was recurrent " croup " ---never heard of

croup that lasts for a solid yr, have you?.....finally, every time we

went to the hospital, and we tried several locally, I asked the nurses

and drs who was the best pulmo in the state.......and then verified

that with our family dr......and waited 5 months to see her.......and

our lives have improved dramatically. I think what you need here is a

different dr(but thats just my opinion, from what you have said). He

shouldnt just diagnose and then leave you hanging with no action plan.

I've learned a lot!!NOthing I ever wanted to learn, though. My kids

are on basically the same meds Garrett is on, with a few

exeptions--have you ever tried adding Foradil to his pulmicort nebs?

We have found great improvement with the coughing from that. Its a

long lasting bronchodilator. It comes in a capsule, and for older kids

you put it in a dry inhale device, but for littler ones, you can open

the capsule and sprinkle it in the pulmicort twice a day. This has

REALLY helped as well. Another idea that comes to mind is Atrovent.

This is another neb med, and while its not a " rescue " med, like

xopenex, used in conjunction with xopenex can relieve symptoms

dramatically.

We've had all 3 kids tested for CF...a couple times. Negative.

However, if he presents like a CF kid....with lots of mucous, he may

benefit from an airway clearance device. This shakes up the mucous and

then the xopenex can get into the airways better. Savannah has found

great relief with this. She just blows into it, and when she breathes

back in, it sends down little vibrations. It doesnt hurt, and its

relatively cheap.

I am really hoping that this winter isnt as bad as the last several,

now that at least two of the kids are on the IVIG. I ALMOST(almost)

wish that Donovan's IgG would drop again so he could get the benefit

of it as well. We are watching him.

I wonder if anyone else on the board is in your area and could

recommend a good immuno? were you seeing an allergy/immuno or a

regular immunologist or infectious disease dr?

Gosh.......I can just picture my boys(and now your Garrett) at that

age........just the exact image of what my boys have gone

thru......and it really robs them(and you) of the joy and memories of

what should be a really happy time in your life. Heck, when the boys

had that constant cough, they couldnt even stop long enough to smile

for pictures!!

And........I think I speak collectively here to say that each of us on

this board have had at least one person in our family(even a spouse)

who would rather think this is just normal.........its a case of just

not wanting it to be. BUT.......ignoring it wont make it go away,and

your child will just get sicker.

I really, really, really think from what you have written that Garrett

would benefit from IVIG. I hated, hated, hated the thought of it at

first.....but now, its just " pokie day " and they get a happy meal, and

watch some movies and then its done. This is the first yr we have been

able to go on a real vacation......w/o anyone sick!!

Please, please look into this option....and other drs in the area.

Many of us drive a long distance to get a good dr......we drive 70

miles, several times a month....but its worth it. and I think we have

about the lowest drive of most of us!!

Feel free to email me personally if you want to talk.......I

understand what you are going thru.....we all do.

Valarie

mom to

Olivia, asthma

Savannah, Donovan, Brennan, CVID, asthma