Wednesday, October 3, 2007

Behind again! And Chase's allergy test results.

Gosh! Time just won't slow down for me to catch up! So let's see...I was gonna write about Chase, Brenden's 12th b-day and our Labor Day beach trip.
So I will start with Chase. As most of you know Chase has battled with eczema, asthma and severe allergy since he was pretty much born. We've been to almost every kind of doctor including a naturopath/homeopathic doc. Including one out of state. They've all said the same thing...he has eczema and he'll grow out of it. (Still waiting for that day!) And then they push the prescription meds that I'm sure they get kickbacks on...antibiotics, oral steroids, steroid creams, antihistamines, cancer causing creams like protopic and elidel and so on. All of these seemed to make him worse, not better unfortunately.
So these past 2 yrs. he has been med free except for an occasional asthma treatment of Xopenex. Besides his eczema, asthma and allergy he's very healthy. The only thing he's ever had is the fly-by 24 hour tummy virus and mycoplasma pnuemonia (walking pnuemonia). They say it is not bacterial or viral but fungal. He has gotten that each year since he was 2 except last year. But it got him again this year in August which is usaully when he gets it. When he was little they used to put him in the hospital for 3 days. That always sucked. But now that he's older it doesn't get him as bad and we are able to treat him at home. They put him on Zithromax, Oripred (oral steroid) and a codeine cough med. I knew he needed the antibiotic, but the oral steroid I should have not given because while it does work very well and clears up his eczema it also causes him to rebound when he finishes the course. So when he's done he gets worse again before he gets better. And the codeine cough med I was hesitant to give because codeine is pretty strong and it had phenergan in it as well and I didn't want to zonk him out.
Okay so we went for allergy testing on Sept. 14. He'd been before when he was about 9 months. They did the prick test on his back and nothing showed up which I thought was very strange. At that time they did not do the RAST since he was so young. Then again about 2 years ago we went for bloodwork but the stupid lady could not find a vein and was literally jamming it in and around while Chase was screaming bloody murder. I finally had to tell her to stop and just forget it so we walked out with nothing but a screaming child in pain who is now deathly afraid of having blood taken. So this time we are seeing an ENT. We'd never been to that one before. And honestly I never would have if it had not been for us meeting a lady at Walmart who was an ENT nurse. She saw Chase and asked me about him and then told me that she would really like to help him. We exchanged phone numbers and the next week she called me with an appt. set up and everything. So we went to the ENT and she was shocked to see how bad off he was. She said they had a little boy with bad eczema before and allergy shots helped him and she's hoping they can help Chase too. So then she sends us for the blood work. Well, we explained to the lady in the office how scared Chase was and that it is very hard to get a vein. I told her that if she didn't feel comfortable to please just let me know and to send us to the hospital's lab where they are used to taking blood all day long. So she did take a look and decided that we should go to the hospital. So we get there and there is like 25 people in the waiting room! It was lunch time, I had all 3 kids with me and Chase was already crying just thinking about getting blood taken! It was so sweet, while waiting an older lady noticed Chase crying and asked him what was wrong. He told her he was scared to get blood taken. She told him not to worry that he would be fine. She left for a second and then came back up to him and handed him a $5 bill and told him to go pick out a treat at the toy store when he was done. That was just SO sweet =) So after waiting about 45 minutes with 3 hungry kids they took us back. We go into the room and it's a very young pregnant girl! Not that I have a problem with that, if it was me no problem...but I needed someone with lots of experience that could get the vein with one poke as fast as possible! So after looking for a while she decided to go get another tech, I was so happy. An older black woman came in and I can tell right then she's the one. But while holding Chase who was still crying I forgot to tell them one important alcohol wipe! EEK! I had my head turned looking at Logan who was trying to run around like a maniac and didn't realize she was about to wipe him. See, being he scratches so much the eczema is open like a sore and we all know how alcohol feels on a bo bo! So he screams and I'm like they didn't even poke you! Then I see the wipe and let them know what they just did! They said they were very sorry, they weren't even thinking! So then the lady sticks him and it's not so bad afterall. She got it perfect on the first poke, thank goodness! They used a butterfly, so it was small and had a small tube that ran to where they change the tube to make it easier. It went quickly and we were outta there.
A week later we got the results back. I also had them run a CBC (Complete Blood Count, just in case someone's not sure what that means) with a differential. I'm gonna post the results here just in case someone knows what I'm talking about or if a doctor or nurse read this and thinks they can help!!
CBC- the # and the H & L stand for High & Low
WBC- 16.1 H
RBC- 4.31
Hgb- 12.9 L
Hct- 38.8
MCV- 90
MCHC- 33.2
RDW- 12.3
Plts- 681 H
MPV 5.5 L

Manual Differential-
Segs- 35 L
Bands- 1
Lymphs- 25 L
Monos- 11 H
Eos- 27 H
Basos- 1

Platelet Evaluation- Normal
RBC Morph- Normal

IgE- Immunoglobulin E Level-
> 26000.0 Ref. Range [0.0-90.0]
(as you can see here this number is almost unbelievable! More about this at the end)

He tested very high for every inhalant, most at >100 (i.e grass, trees)
Cow's milk- 95.60
Beef- 14.00
Chicken- 9.88
Egg (yolk & white)- 25.70
Wheat- >100
Rice- >100
Soy- >100

Anything above 17.50 is considered Very High.

So as you can see he tested very high for everything! His doctor was astonished! As was everyone else in the office! So now she wants him to start allergy shots. Which we are supposed to start this Friday. I'm still a little unsure though. I am wondering if it will even work, if he will get worse or even have a bad allergic reaction? Which is why I have to go pick up his Epi pen prescription tomorrow. They say he will do 2 shots per week for 20 or more weeks! Then after that he will do maintenance shots for another few years. That's a lot of shots and a lot of money and a lot of going back and forth to the hospital which is not really that close and a real bitch to get to! I guess we are going to go Friday and I just hope all goes well. I will keep everyone posted.

And one more thing! I know this is very long already but there is more. After getting his results back and seeing how allergic he is and how high his IgE levels are I did some research on the net. I came across an extremely rare disease called Hyper IgE Syndrome or Job's Syndrome. He presents with many of the symptoms. They think they have identified the cause but there is no cure or treatment at this time. It was very interesting so I printed out some info for his doc. She was very open to reading it which is a good thing because we all know that most docs these days think they know it all and usually just blow me off! So she read it and did admit that she had never heard of it (most docs haven't) and thought I might be on to something. So now we have been referred to a Genetic Counselor. I need to make that appt. as soon as I find out what insurance covers because as you can imagine all these doctor trips, blood workups and such are gonna kill me financially, LOL!

Okay, I think that's it. I will post about how the allergy shots went this weekend.
Wish us luck!