I'm frustrated...

[bmombtoo]

<span style=" font-size: small;">I've not heard anything from
Hopkins as Josh's doctor is on vacation. So......we are still in a
holding pattern for more testing.<br>
<br>
My frustration is I think he has another sinus infection; he just
had sinus surgery in May (polyps, cleared passages, removed
adenoids, and put in PE tubes). For the last week or so he has had
this off and on headache, sneezing, etc. His peaks flows are just
below his 20 % range, occasionally lower. Every once in awhile he
blows nothing (the arrow doesn't move) like he has too much mucous
in his throat......or as he said if its zero, I'm dead. Today he
has had the off and on headache, some lightheadedness, and about an
hour ago he vomited. Classic Josh sinus infection symptoms. He's
using Flonase, I started the machine(albuterol) twice a day last
week, increased his Advair ffom 250 to 500, and am doing nasal
washes every evening day. That's a lot and still we are back
at square 1, well maybe not square one, but sick again. We will
probably be at the "pedi" tomorrow (good thing is I can
stay home from school and work on my take home final that is due on
Thursday).<br>
<br>
My frustration is it seems like it never ends.....as soon as I
think we found the solution he is sick again. I feel bad for him
and me, and I just wish I could make it all go away. Not wishing he
has CF or is a carrier, but at least its an answer and maybe a new
medication regiment will help. He is suppose to do the nasal
differential test, and than genetic testing through
Quest.<br>
<br>
Just venting......compared to what some of you guys go through a
sinus infection is nothing. Thanks for giving me a place to
complain.<br>

 

[thefrogprincess]

How terrible! My sinuses have always bothered me a lot buit not that bad. I don't really have any advice for you, but I do wish you luck and I hope you get some answers soon!

 

[anonymous]

Sinuses are a pain. My son with CF is almost 2 and sinuses are our nemesis so far. He had horrific sinus disease shortly after turning one. He needed a PICC for a month and surgery. All his symptoms came back a couple weeks ago and we were at the ENT today. Antibiotics for 3 weeks and nasal rinses twice a day in addition to an hour of the VEST, 40 enzymes a day, Flonase and vitamins. He is on more meds than I have been on in my entire life! But he is happy and healthy besides that. Hopefully you will figure out soon what is going on with Josh.
Megan

 

[JazzysMom]

It is true that not knowing for sure what you are dealing with is difficult. It seems like you get into a vicious cycle & there is no end to problems. It does get better. Hold you head high & keep on chugging. No need to worry about venting. Big or small we like to offer advice & comfort!

 

[NoExcuses]

It sounds like your sun has untreated allergies. I had huge sinus problems before I treated my allergies.

And quite frankly, as long as your son's nasal terbinates keep swelling from allergy exposure, he's going to continue to have sinus problems.


1. Get a full panel allergy tests. This should be a skin test and should be done over the course of 2 days.

2. Get encasings on all pillows and matresses in the bedroom. www.allergyasthmatech.com has good allergy encasings.

3. Wash bed linens every 7 days

4. Get a HEPA air purifier to remove allergens from rooms where your son is. 8-10 hours a night is spent in his bedroom. 4-5 hours or so spent in the living room? get an air purifier there too. Must be HEPA.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.costco.com/Browse/Product.aspx?Prodid=11096642&search=HEPA&Sp=S&Mo=2&cm_re=1-_-Top_Left_Nav-_-Top_search&Nr=P_CatalogName:BC&Ns=P_Price|1||P_SignDesc1&N=0&whse=&Dx=mode+matchallpartial&Ntk=All&Dr=P_CatalogName:BC&Ne=4000000&D=HEPA&Ntt=HEPA&No=1&Ntx=mode+matchallpartial&Nty=1&topnav=&s=1
">http://www.costco.com/Browse/P...ial&Nty=1&topnav=&s=1
</a>
5. Get a good intranasalcorticosteroid. Nasacort AQ is just as effective as Flonase but it lacks the alcohol. This means less nose bleed, headaches for side effects. And Nasacort AQ doesn't have the nasty taste/smell of Flonase which will help with compliance. Do the nasal steroid EVERY DAY

6. Get a good antihistmaine. No claritin/clarinex junk. Get some Allegra or Zyrtec (if you're in the States)

7. Get a good sinus rinse to use at the end of the day with STERILE water. This will rinse the pollen out from the nasal hairs and will help avoid allergen exposure overnight from pollen collected during the day

8. Don't open any windows or doors in the house. If you need the house to cool, turn on the air.

Hope this helps!

 

[bmombtoo]

Thanks everyone. He was some better today so I kept my
co-payment.<br>
<br>
Amy:<br>
-He has been allergy tested and he might start shots this fall,
depends on how his summer went.<br>
-Takes a shot called Xolair once a month, special hot to hit asthma
on a cellular level.<br>
-Takes Singulair and Zyrtec night and has been for a least a
year.<br>
-Run a hepa filter in his room every night<br>
-Never or rarely open any windows, I have asthma and allergies
also. Keep that AC running<br>
-pillow and mattress are encased,<br>
-using the saline sinus rinse by Ayr every evening since we saw the
doctor in June, and today we started using it twice a day.<br>
<br>
Ughhhhhhhhhhhhhhhhhh<br>
School is about to start and last year he missed 12 days, not
counting half-days.<br>

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>bmombtoo</b></i>


Amy:

-He has been allergy tested and he might start shots this fall,
depends on how his summer went.
</end quote></div>


summer sounds like it's sucking. time for allergy shots ASAP. why are they waiting for fall?

But one thing that will make a huge different at the site of inflammation - is an intranasal steroid. It sounds dumb ,but I promise u will see a difference. Nasacort AQ - get your doc to call in a script ASAP.

Have you ever tried Pseudoephedrine? This will reduce swelling of the nasal terbinates as well.

 

[JRPandTJP]

Great advice Amy. I will add my 2 cents.

Some natural things that help the body not react to allergens are Quercetin (citrus bioflavanoids), stinging nettles, and Nasal Crom (which is a nasal spray and blocks histimene reaction in the nasal passages where most allergies begin.) Not sure if the NasalCrom would be overkill with his other nose stuff. I have severe fall allergies and this is working as well if not better than some prescriptions I've taken, without the side effects.

I also think inflammation is related to allergy responses. Working towards getting the body to be balanced biochemistry-wise is important in helping immune response and reducing inflammation through the whole body. Diet and supplements such as DHA, GSH (if he has CF) and probiotics all work to help reduce the acidity of the body and restore balance. Dairy can be a real problem for athma and allergy sufferers whether or not they are allergic to it, as can wheat/gluten. Playing with diet, especially during allergy season may be helpful. This is well worth researching and/or consulting with a Naturopath MD about as many of these drugs actually weaken the immune system over time, causing more problems down the road.

Hope this helps...Jody

 

[letefk]

I wish that I could offer a solution, but mostly I just identify
with your frustration.  We've had a tough summer this year;
I've heard it is a bad allergy year.  We all work so hard to
do all this... the meds, the sinus washes (I've been doing them 1-2
times a day on both girls all summer, and let me tell you, getting
a 2 year old to do a sinus wash is NOT fun). It all helps; I know
that.  But the youngest is STILL battling a sinus infection,
and I want to scream.  Okay, some mornings, I do scream.
  But behind all that, what I really feel is fear, and
anger, I suppose.  Not at them, but at what chronic illness
does to our lives.<br>
<br>