discussion title:
scared and confused about DS health
message #:
2003.4 in response to 2003.1
Amy,
I think I've replied to your messages before. My DS (9) also has bad sinuses, asthma, allergies, etc. ITA w/the pp. DS's been allergy tested 3 times - 3, 5, & 9. At 3, he was completely neg, just like your DS; however, just short of 2 yrs later he tested pos to several things and started allergy shots. Just this past Feb, he was retested - some of his allergies are resolved but he now has several new allergies. DD was tested at 2 and 6. She had a few pos @ 2, started shots, but had tons of new allergies at 6. It is not at all uncommon to get neg results when they're young and pos when they're older because it takes several seasons of exposure for the allergy to develop AND to show up on testing. If you're still concerned about dairy, I'd ask for a RAST test (blood test). Our allergist's protocal for food allergies is to skin test first. If they test neg to something they've reacted to in the past, he follows up w/a RAST test. If both are neg, then he considers them neg but not unless BOTH are neg. Also, if his symptoms are GI related, he could be lactose intolerant. If that's the case, limiting dairy and/or using soy, rice, or lactose free substitutes will help significantly.
I know the sweat test is scary but it's a really common rule out (the vast majority of those tested are neg!) Both of mine were sweat tested. DS was also tested genetically because of his asthma/sinus/GI probs. The hard thing w/CF is that no test is completely conclusive. Be sure to ask what your DS's results are. Less than 40 is considered neg, but there have been reports of false-negs in kids whose scores were in the 30s so definitely ask for the score. It's a non-invasive, easy test. Just dress your DS warmly and have him walk around (to work up a sweat). With that test, you should have answers the same day (or very next at the latest). We did the immune testing thing, too. It's just a series of blood draws over several weeks (plus an immunization in between). The initial test will at least rule out anything really bad but it will take a while to get full answers on that one. Probably the hardest part w/the UGI is drinking the barium (YUCK!). Keep in mind though that even if the child doesn't reflux with the UGI, it doesn't mean reflux isn't an issue. If you have reason to believe your DS has reflux even after the UGI, you may want to ask about doing a trial of a reflux med to see if there's improvement. The PH probe is considered the gold standard for reflux testing but it's a more difficult test (we've not done that one). My recommendation is to just keep pushing for answers and/or aggressive treatment.
All 3 of mine have asthma and all 3 had recurring ear infections til age 3. It was hard because they were constantly sick when they were little (EIs, pneumonias, strep, sinus infections, croup, etc. Oldest DS even had whooping cough and chicken pox.) My ex-pedi kept saying they'd get sick less as they got older. It was not at all comforting at the time, but the truth is, it DID happen. They still aren't kids that get perfect attendance, but they ARE significantly healthier. DS just had his first asthma flare in a YEAR!! First pred use in over 2 years. I honestly NEVER thought I'd see the day he'd go a full month w/o an asthma flare or the need for an antibiotic (or pred or sick DR visit), but it happened. DD was easier because her issues were (still are) almost 100% allergy related. DS's were a combo - silent reflux, very poor immunity to pneumoccocal/streptococcal bacteria, & allergies. DS still has bad sinuses and according to our ENT will likely need another sinus surgery before he's an adult, but his health is much improved. My advice is just to keep pushing until you either get answers, or you see big improvements in your DS's health.
Good luck w/this latest round of testing. I know it's stressful and scary but I really think you're on the right track!!
Mel