Tuesday, December 19, 2006

Yes, she's a severely atopic child.

Pediatric Grand Rounds is up at Blog, MD. Since it wasn't up by two days after the normal time, Shinga came in with a swashbuckling venture at Breath Spa for Kids and put up her own version. My account of Baby E's endoscopy is included in both versions; my thanks to both editors.

We are making progress in figuring out what caused Baby E's allergic reaction at the endoscopy. I had to make several phone calls to the children's hospital, but finally got the name of the company that makes the oxygen masks like the one used in Baby E's procedure.

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I was able to contact the mask company last week. The quality coordinator was wonderful and immediately took Baby E's reaction very seriously. She was very surprised that she hadn't heard from the doctor, and said it was almost unheard-of for a patient (or patient's parent) to be the one reporting an allergic reaction.

She called the children's hospital to try to get information about exactly what mask was used. She's going to track down every ingredient that went into or onto that mask to try to find out what might have caused Baby E's reaction.

My guess is that many allergic reactions go unreported. If I hadn't drawn the nurse's attention to it and called the doctor about it, they would never have noticed Baby E's bright red rash and puffy cheeks. And if I hadn't called the mask company myself, the incident most likely never would have been reported or further researched.

Like vaccine reactions, I'm sure that allergic reactions are vastly underreported. Poorly constructed studies that tend to underestimate true allergic reactions, like the Tulane corn study, only help to reinforce doctors' tendencies to brush off or ignore allergies.

Comments about paranoid parents who imagine their child's allergies are so unhelpful to those of us who have to deal with allergies on a daily basis. I'm sure there are a few parents who do this, but I highly doubt it's as many as commonly thought.

With the huge flaws in allergy testing, the fact that the overall allergen load can affect the reaction to any individual item (for example, cross-reactions in which a patient is allergic to specific foods only when pollens containing similar components are in season), the likelihood of growing out of an allergy, so many factors such as medications and time since the last exposure causing variability in reactions to an allergen, and the possibility of delayed or non-IgE-regulated reactions, it doesn't pay to make assumptions. I wish doctors weren't so quick to assume that parents are overreacting or imagining things. Even if a child has a confirmed allergy, they tend to assume that a non-peanut allergy can't really be that serious, especially if it's not one of the Sacred Top 8 Allergens.

In such an environment it takes a persistent person with a lot of chutzpah to actually make sure an incident like this is properly followed up. If I wasn't such a strong advocate for my child, this reaction would have completely slipped through the cracks . . . until the next time Baby E had a procedure and perhaps suffered a much worse reaction.

I received a telephone call today from the anesthesiologist who worked with Baby E for her procedure. Dr. T had told her last Friday about Baby E's reaction--probably after receiving the phone call from the QC rep at the mask company.

The anesthesiologist said she was very sorry that Baby E had a reaction, asked how she was doing now, and said to let her know if she could do anything else for me.

She seemed a bit flabbergasted and kept saying she'd never seen anything like this before, and that the GI specialist hadn't either.

I said that I was very glad we had not given her the dextrose IV or propofol, since another allergic reaction on top of the reaction she did have could be very dangerous.

She said, "We only gave her plain saline and the gas anesthetic . . . just the things we absolutely had to give her."

She said it as though she had been in full agreement with those precautions at the time, or as though it had been her idea. I fought the urge to burst out laughing, thinking of the long lecture she'd given us about how those precautions weren't really necessary.

The anesthesiologist told me that obviously my child was extremely sensitive and that we needed to be very careful any time she had a procedure.

I said, "Yes, she is extremely sensitive. As I mentioned to you before the procedure, she reacts even to things that aren't "supposed" to cause reactions. We have to be very careful with her everywhere."

I didn't quite say "I told you so" or, "It would have been nice if you'd taken us more seriously before the fact, instead of having to see a reaction happen for yourself before you believed me." But I sure wanted to.

She did tell me that it was sevoflurane that Baby E had along with the nitrous oxide. I mentioned that there were several instances in the medical literature about similar allergic reactions to sevoflurane and other gas anesthetics. The sevoflurane data sheet says, "allergic reactions, such as rash, urticaria, pruritus, bronchospasm, anaphylactic or anaphylactoid reactions have been reported."

I don't know if the anesthesiologist will follow up on that at all or not. She said that she didn't think it could have been the anesthetic that caused the reaction because it was gas anesthetic, and was in Baby E's system for such a short time. That makes no sense. The allergic reactions noted in the clinical trials of sevoflurane took place during the induction period (i.e. in the first few minutes of anesthetic use, before the procedure even started).

If the mask doesn't seem to contain anything that could be the cause of Baby E's reaction, I'll certainly be looking to find out more about those anesthetics next.

Another thing I haven't really been able to get an answer about is whether the extent of Baby E's congestion after the procedure was normal or not. She was wheezing and rasping loudly when breathing and her voice sounded gurgly and hoarse immediately after she came out of anesthesia. She was coughing sporadically and remained congested for at least a day or a day and a half after the procedure. She was indicating that her mouth, throat and nose bothered her a lot during that time, as well as her cheeks. The rash took days to disappear.

Is that amount of congestion normal after an EGD, with the anesthetics she received, or not? I don't know, but I did think her tongue seemed swollen. The combination of symptoms concerns me that the allergic reaction may have been affecting her airways as well as her face.

Either way, we really need to find out what caused the reaction so we can prevent it from happening again.

3 Comments:

Anonymous Anonymous said...

I truly hope that she wasn't allergic to the gas. If she were allergic to the mask, there are probably other ways to get the gas to her, but if she's allergic to the gas, yipes!!!

8:13 AM  
Anonymous Anonymous said...

Have you consulted an Allergy specialist? It is possible to test for anesthetic allergies, although allergic reactions to gas anesthetics are extremely rare. Perhaps Baby E is allergic to latex? It is possible, specially if she's had many surgical procedures. It is dangerous to diagnose an allergy and start avoiding things without an Allergy specialist consultation. (See post on my blog:
http://allergyasthma.wordpress.com/2006/12/15/tragic-example-of-misinformation-about-allergies/

7:42 PM  
Blogger purple_kangaroo said...

Yes, Liz, I hope so too! My hope is that there was some kind of coating on the mask that can be resolved next time (if there is a next time) by simply washing all plastic before it touches her.

Dr. De Asis, thank you for your comment. This was Baby E's first procedure, and it was a non-latex mask.

We have seen two different allergy specialists (multiple times) for Baby E, neither of which was especially helpful, although they did diagnose/confirm her food allergies via skin testing.

Currently I'm trying to find an allergist who will take her allergies more seriously rather than brushing them off as impossible or mild just because her welts on the skin test were not huge, and because "it's virtually impossible for a child to be allergic to more than 4 things".

8:35 PM  

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