K's Allergy Results!? Questions?

[totoro]

Well we went to see the Allergist today. I have no idea... K has had either a stuffy nose, runny nose or itchy eyes since day one! The poor thing has suffered for so long.
Of course like so many things no-one would listen to us.
So this guy did the tests on her back. Nothing. Looked in her nose, lots of swelling... throat swelling and redness. He leaves and sends in his nurse. She hands us a piece of paper with info about "Vasomotor Rhinitis". All of the info is not anything that leads us to think K has it. (Now looking on-line it most likely is)???
My huge issue was, his dismissal that it might be anything else. If it isn't these 12 allergens that it has to be this Rhinitis no other options. husband said what about Dairy?
"No"
"OK"
So he gave us the some info and some medications... I looked at the Nasonex and said, "Is there any other options, Steriods are not recommended for Mentally Ill children"
He full on dismissed me, and said there was no proof.
I said I had read a few reports and books that said this exactly and was concerned. He said he was not!
husband tried to ask again about other things or issues, he kept blowing us off and acting like we were CRAZY! And pushy.

So now looking up more about this thing. It looks like life is a trigger... smells, chemicals, temperatures, climate changes, everything!
We need to saline or neti pot her nose 3 times a day. He RX'd Astelin (Antihistamine) and Nasonex (Corticosteroid). We are supposed to give it 10 days and see if it gets better. Then he "may" do a CT scan to look for blockages.

So has anyone had to deal with this and what have you done if you were are Mentall Ill and had to use Steroids? (This is what triggered Jane Pauley) I know the chances are not huge and we can decrease or stop if does activate. I just feel so bad for the kid, if it aint one thing... Now I have to change her environment to help not only her mind but her NOSE!?

TIA for any info

 

[gcvmom]

There is less of a problem with the nasal sprays than an oral steriod that really saturates your system. Yes, you still get some in you, but I really don't think it would be enough to cause the kinds of problems steroids have the reputation for. difficult child 1 was on oral prednisone for about four months and it really made him depressed. husband took oral prednisone for about two weeks post-operatively and it nearly made him psychotic (but then, he's the one I suspect with a mood disorder). Now, he's also taken Flonase, which I believe has a form of steroid in it, and has had no problems. Same for difficult child 1 and Flonase and even Advair. It's really the oral steroids that mess people up, and usually it's when you're on it for an extended length of time.

If I were in your shoes, I think I'd go ahead and give the nasal treatment a try. You can always stop if you see things starting to go awry for K. You'll know before anyone else that something's not right because you're her mom and know her the most intimately. The neti pot is one option. There's also a new kit by the people that make the Ocean saline nasal spray. One bottle is used for irrigation, and the other has a moisturizing solution to help reduce irritation. I just picked up a pack at Costco yesterday for husband because he's had a lot of sinus trouble lately.

Hopefully one of these options will give K some relief. And then again, you always have the choice of getting a second opinion.

 

[totoro]

Thanks! I think we are going to do it. Nasonex was listed as one of the reactive steroids when used long term. (It could be inducing) Basically it said any of them even the nasal when used long term, which is what she will be doing.
There is no cure for this so we are looking at the rest of her life. We are supposed to be doing all 3, the Saline, Astelin and the Nasonex.
If it helps her and she remains stable, awesome! She is very sensitive to most medications. or has been in the past.

 

[gcvmom]

Who knows, she may only need the nasal antihistamine for a while. She may outgrow it! Take it one day at a time.

There are also products on the market, like Nasalcrom, that contain an ingredient that prevents the histamine from even being released into the body -- it's a mast cell inhibitor. Think of it as sort of the difference between fire prevention and a firefighter. Much better to prevent the allergic cascade from even starting. Best of all, it's steroid-free and OTC.

 

[susiestar]

With the Astelin have her lean WAAAYYYY over when she uses it. It has the nastiest and longest lasting icky aftertaste as it drips down your throat. My allergist said to have the kids bend all the way over, spray it, then let them blow their nose BEFORE they stand up. He said otherwise kids just plain refuse it or fight it worse than any of the other nasal medications. I personally found it easier to use after we got this advice. My own doctor now uses it this way (I demonstrated the method for her) and tells her other patients this method. Otherwise people just don't keep up with it.

I don't know if they will react or trigger her. I think you need to consult another allergist. I can tell you my allergist if you want to come to Oklahoma. He is very very highly regarded and we didn't even need a referral.

I cannot believe he only did 12 tests on K. Poor thank you, Jess AND Wiz had over 90 and I had 70. I didn't react to anything either. For me they say it is part of the fibro, my body is just "intolerant' but not allergic. Sort of like if you vomit up a medicine you are not truly allergic, but are just intolerant. But you put it down on forms as an allergy anyway.

I hate that K had to go through all of that for so little caring on the doctor's part. he is a jerk. I can say that saline through the sinus rinse bottle or netipot, and with the Ayr gel put on with a qtip make a HUGE difference for me.

I hope you get the to bottom of the problem, AND that K is not triggered by the medicines.

 

[klmno]

Totoro, the dr put difficult child on "Astelin", which is a nasal spray that doesn't have something in it that I was concerned about (steroids maybe)- and he told me that nasal sprays are less likely to trigger anything. difficult child only tried this a few months ago, but he had no problem with it.

I have had great concerns this past year over allergies and allergy medications- someone mentioned steroids triggering Jane Pauley- did it trigger mood cycling to start in her or did it trigger ons specific reaction?

Edited: well, I just noticed that this one one of the medications already diagnosis-d for her. difficult child used this, this year, and dropped the other medications- no steroids. This was after he was in psychiatric hospital so I can't say yet if it "solves" the problem. I will say that our allergies have been acting up the past the past few weeks and I haven't given difficult child any medications for them yet and difficult child has been hypomanic. I was testing this to find out if he was only getting manic while on allergy medications. My gut is telling me that if I gave him the allergy medications and steroids like I uused to in the spring, this probably would turn into full-blown mania.

 

[totoro]

I realize the chances are slim. But everything I have read last night says that this Vasomotor Rhinitis is a life long thing. It also says that one medications usually does not work. The combo being the key.
I am just antsy with K's EEG results coming. This happening and husband is being tested as well... we have had 8 doctor apts in the past week and a half.
Here is the article about Jane Pauley and steroids... one of them.
http://bipolar.about.com/od/causes/a/bpsteroid1.htm

 

[Josie]

I just did a quick search on Vasomotor Rhinitis and it looks like that is a diagnosis based on symptoms. They don't know what causes it if it isn't allergies.

Is there any reason husband asked about dairy as an allergy? I gave up wheat and milk and apparently, one of the two was the cause of my life-long stuffy nose.

 

[totoro]

Fairlyoddparent~
This is what made me SO mad!!! husband and I are seeing a MD who is also an altenative practitioner. He is wonderful so far! But husband has horrible Gout and Arthritis. Spine is slipping and just overall inflammatory issues since about his early 20's.
So we have been reading for about the last year about girlfriend/CF... Because husband also has Bowel and stomach issues.
K loves dairy...
So our new doctor for husband and I is testing husband for allergies to see if anything is contributing to his inflammation. Or causing it. He has stripped him of all food... basically he can eat white food, chicken, apples, pears, bananas, turkey and fish.... and spices. No grains, sugars, processed foods, dairy or much of anything for 3 weeks until we can get his attack under control and rule out what is going on.

So husband asked about dairy for K, becasue of what he has read and her love for dairy, we also asked about Gluten...
I am going to see her pediatrician in 2 weeks I think and I will ask her and if not I will ask our doctor.
We will do this and see if it helps and if not I will push for more research.
But we are trying to cut back on her carbs and sugar slowly anyway and have been.
And dairy was one that he would not test for?

 

[Josie]

I hope you can find something as easy to fix as diet for both of them.

I took difficult child 2 to an MD who was also a little alternative. He is the only one of all of the doctors we have seen who believes in the diet/mood connection.

My kids have been on the girlfriend/CF diet for 2 1/2 years. The best response I get now when I mention it to doctors is tolerance. I can tell a lot of them want to roll their eyes at it. You might just have to do it on your own.

Other than his attitude about it, I wouldn't worry too much about him not testing. We have had several different tests over the years with varying results. Some of them have said my daugher is not "allergic" to wheat and it hurts her tummy every time. The best test for food allergies is to eliminate the food and see what happens. In theory, you should then re-introduce to see if the effects come back. I have never been able to bring myself to intentionally try gluten but I have had it by accident so I am convinced for me.

 

[TerryJ2]

He's a creep to ignore your Qs and concerns.
I am editing this in regard to the steroids and possible CT scan--I read too fast and didn't see that about the poss CT scan. At least he left that option.
Have you started with-the steroids yet? I hope you get relief with-it. It usually works pretty quickly. But you are right to be concerned about it being a possible trigger or aggravation for a mood disorder.
So sorry.

 

[SRL]

Totoro, we were treating one of my kids for allergies for two years before I started getting suspicious and requested our pediatrician run a RAST blood test to make sure that's what we were really dealing with. I requested milk, wheat, and dust mites plus the doctor added a total IGe to check for the presence of allergies. It's not a foolproof test but based on strong family history of allergies I thought we'd hit on at least something there if that's what it really was. The blood test turned up nothing so we were referred to an ENT who ordered a ct scan which indeed did show chronic inflamed sinus tissue so he recommended endoscopic sinus surgery to clear it out. It worked great but two years later we were back in for another surgery. That was five years ago but the key here was that we finally hit upon the cause (no allergies--flares up during colds), the right combination of medications at the right time. In our case that's both Extendryl and Singulaire during colds, and if it's not cleared up by around day 8 I'm calling in for an antibiotic and sometimes prednisone. We tried various combinations and this is what worked best. FYI, my ent says the gold standard for sinus infection treatment is an antibiotic such as Augmentin combined with prednisone.

The inhaled steroids are much lower dose using a direct delivery system so I'd be far more comfortable using that than oral. I doubt you'll have problems.

 

[totoro]

Thank you everyone!!! She is very up and down today... but she has had a HUGE week. So I am not thinking anything until she has had a few days to be *normal*!
This is such a weird new thing! I had never even heard about it... one more thing!

 

[skeeter]

If you can, go to a different allergist.

I "lucked out" with ours when NF was young. This allergist didn't go on just skin test results, but also on very strong history. While NF actually did test positive to cow's milk, the allergist stated that he would have diagnosed based only on the history he took - NF had many symptoms indicative of food allergies.

One thing about antihistimines, the BEST time to take them is BEFORE symptoms occur. This means if you suspect ragweed allergies, finding out when ragweed pollen is present and treat accordingly. This means for my family (all highly allergic to ragweed) we start antihistimine treatment on August 1st, and continue every day until the first killing frost (usually mid to late October). It's important to have a steady amount in the system. If you wait until symptoms are present, you are having to fight a lot harder to clear them up.

If your child is suffering year round, food or dust mites is a possibility. If season, look to trees, grass or weeds. Molds are tricky ones - depending on where you live they could be seasonal or year round.

 

[Steely]

My gut tells me to take her off all dairy, and see if that helps, before adding any medication. Dairy products are known to cause more mucus, so at the very least, going off dairy will help slow down her inflammation.

Matthew gets poison ivy horribly, and like Jane Pauley, got a steroid shot once to reduce inflammation. It sent him into a manic tailspin just like Pauley talks about in her books. I don't know if nasal products can do that or not - but my gut tells me to try the more homeopathic methods first.

Matthew never tested positive to be allergic to anything, but always had severe, debilitating migraines. Several years ago, he actually discovered the link. He stopped eating all dairy, and his headaches all but disappeared. Many of these things just don't show up on standardized tests.

H had IBS and Chrons like symptoms for years, but tested negative on every allergy test she ever had. Yet when she went on a gluten/wheat/dairy free diet her stomach problems all but went away.



Hugs, and good luck. by the way, how did the EEG go?