We found an answer- at least part of one!

[Guest guest]

Hi everyone,

I know it has been a long time since I have written, though I read the posts

every day! Many of you probably don't even remember me. LOL I have a

daughter with a PID as well as HIV who gets monthly IVIG and has been doing

FANTASTIC.

I also have a son, who as of yet has an undiagnosed problem. I say problem

because he does well at times on the immune studies and other times, does

poorly. So there is no way to say it is definately an immune problem.

However, I just wanted to share some wonderful news for us. has

battled, like so many of the kids here, one sinus infection after another

(several surgeries). One ear infection after another (2 sets of tubes) and

recently 2 pneumonias in only 2 months. I finally gave up on many of the

doctors seeing him and decided that we would see the same pulmonologist that

sees my daughter. The doctor took one look at 's history and knew

there was definately a serious issue, but didn't know what. So after chest

x-rays and x-rays of his throat and a sweat test and a DNA work-up for CF and

many different stool tests and tons of blood tests. We definatley know he

does NOT have CF. LOL We decided against doing a PH probe, but would agree

to trying some reflux meds to see if there were any improvement in the

infection rate. We started on Prilosec 20mg daily. (Mind you, neither the

doctor nor I held out much hope for this treatment) Well, I have to say, with

the exception of the pneumonias we had NO sinus OR ear infections in the

entire 4 weeks!!! has never been off an antibiotic for more than 3

weeks in the past 4 years of his life for one or both of those infections.

So that was a big step! So after treating the chest infections we decided to

go to the next step, we added Reglan to the mix. Since the addition of the

Reglan (given in the am and right before bed) he has had NO stuffy nose,

still no sinus or ear infections and his wheezing and chest congestion have

all dissapeared and hasn't had a single episode of croup in 2 months. The

pulomunologist treats kids all the time with GERD and aspiration etc, but he

said that was the worst case of severe GERD with none of the " typical "

symptoms ie. bleching, vomitting, wet burping, heartburn, etc. he has ever

seen. He had the fluid behind 's ear analyzed after aspirating a tiny

bit and lo and behold, it was 90% pepcid (stomach acid). So many of my

baby's issues have been caused by Reflux! Looking back now, I can see many

of the symptoms of infantile reflux that had, but after his brain

tumor, there didn't seem any reason to think that reflux was in the picture

anymore, because he did not have one single " typical " symptom for an older

child. Reflux doesn't explain all of 's hx, like the several

cellulitis' and severe reactions to immunizations, but it certainly will

impact on his quality of life. Soooooooo, for all of those babies (big and

small) who have chronic sinus and ear infections, I would encourage you to at

least open the lines of communication regarding reflux. I do realize that

many of the kids on this list are already treated but many aren't and PID and

reflux can work in tandem. By this I mean, that the acid can cause tissue

breakdown making a breeding ground for bacteria and viruses and even

yeast/fungi ( has cultured this out of his ears several times) that a

weakened immune system would not be able to control. And vis-a-versa, if

there is a constant infection in the body, then the immune system breaksdown

even further in its futile attempt to contain the problem, drawing resources

away from other areas of the body, resulting in fatigue, irritability and

other health related problems. I am just so excited that my son has been

" healthy " now for over 4 weeks that I have delved into every ounce of

research I can on reflux.

I'll stop rambeling now! LOL

I am so sorry to hear of the troubles of so many of the Pumpkins, prayers and

good thoughts are flooding their way!!!

Take Care and God Bless.

Mommy to Annette 11 (Selective Antibody Deficiency-IGG 2 and 4, CP,

Developmental Delay, g-tube, HIV+), 5 (Brain tumor survivor, severe

hearing loss, chronic sinus and ear infections, asthma, seizure disorder,

GERD) and Trayvon 2.5 (Ivemark Syndrome, severe congenital heart defects,

asplenia, situs inversus) All wonderful!!!!!

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