Last week I learned an aspect of allergies and celiac that most people don’t often think of: what happens when you visit the ER or an Urgent Care facility. Mandie had a visit to our local Immediate Care center on 8/9 to remove a thorn from her foot. Both the staff and I learned a whole lot from this incident.
When a patient has severe allergies and/or celiac disease, extreme care must be taken to make certain that all forms of the allergens do not come anywhere near the allergic patient. This includes common objects such as gloves, bandaids, medications, and cleansers which may have recently been used on tools, chairs, or tables in the room in the case of airborne allergens. In Mandie’s case this included making sure nothing that touched her contained any traces of dairy, iodine (because of her shellfish allergy), palm, coconut, gluten, sunflower, safflower, soy, chamomile, etc. Most of these allergens are very common ingredients in medications and cleaners, so wiping surfaces down with alcohol or another disinfectant that does not contain the allergens should be strongly encouraged before anything touches the patient, and all medications and creams MUST be verified to be free of these things before they come near the patient. Even small amounts of gluten in a cream used on a patient, or in a medication to be ingested, can harm a celiac patient, and any trace of one of Mandie’s other allergens could cause a life threatening reaction in her via contact or ingestion. Thanks to the advice of Mandie’s allergist, her treatment room was prepared very carefully.
Even if extreme caution is taken, accidents can happen, especially when a patient has multiple, severe allergies and tends to be extremely reactive. After any new medication or substance is used on the patient, an epi-pen should be nearby just in case of an unexpected reaction. We found this out when Mandie’s foot was numbed with lidocaine. Luckily the doctor mixed it with epinephrine, which only resulted in a light dusting of blood red hives across Mandie’s face, that faded on their own after about 15 minutes under the nurse’s observation. If the epinephrine hadn’t been mixed with the lidocaine, we could likely have had to use the epi-pen. Because of the nature of the injury, Mandie needed a tetanus shot, which she’s never received due to her allergies. Our allergist decided that a safer option would be the administration of Tetanus Immune globulin in an emergency room setting with a 90 minute observation period immediately following the shot. Luckily Mandie tolerated this extremely well, and the ER staff was wonderfully knowledgeable about allergies, and trusted our ability to spot and recognize a potential problem.
Needless to say, all of this preparation and monitoring leads to long waits. It’s important to be as prepared with diversions as possible before you leave for such a visit.
I learned that Mandie’s MedicAlert bracelet and card were absolutely invaluable in getting her allergies taken more seriously. Everyone from the admitting nurse to the treatment nurses, to the attending doctor carefully went through her information and made photo copies for her records. Every single allergen and it’s main symptoms and severity, as well as current conditions and medications are recorded with the MedicAlert system. This helps a flustered parent not to forget something important during a time of stress, and again, helps medical staff grasp the severity of the allergies and know better how to treat the patient.
I also learned that it is extremely important to be able to be fluent in my child’s condition, treatment, allergens, and reactions. It is also important to be able to state why a proposed treatment should or should not be considered. For example, during the initial consultation with the doctor to determine the problem and course of treatment, I was confronted by the doctor about why Mandie has had no vaccinations. He went several rounds with me over that subject, and didn’t believe the seriousness of potential allergic reactions to vaccines until I showed him her MedicAlert card and he had spoken to her allergist. After he got off the phone with Dr. Mary, his entire tune had changed and he quickly told me that I was correct and that Dr. Mary had repeated almost word for word what I’d said, and told him exactly how she wanted things prepared, what he could and could not use, and that she wanted Mandie in the ER for the administration of the tetanus immune globulin.
Another thing I learned is just how important it is to have a doctor or allergist who is really behind you and will advocate for you. We consider Dr. Mary to be Mandie’s primary doctor because she knows every single aspect of Mandie’s allergies and thus all of the conditions in daily life that are affected by them. Dr. Mary made sure to tell the Immediate Care doctor why it was so important that Mandie not receive the regular tetanus vaccine, why she was not vaccinated, and exactly what could and could not be used around Mandie. An example is after the thorn was removed, the IC doc immediately put aside the triple antibiotic cream, and told me that Dr. Mary had insisted that they not open it, but instead that they use the lavender oil that she knows I keep in the medicine bag with the epi-pens and Benadryl. The Immediate Care doc had never heard of its use, and asked me what it does (it is antibiotic, anti fungal, antiviral, and antibacterial – and is tolerated extremely well by Mandie) and why the doc had requested it. He and the nurses were very interested in learning more about it.
Lastly, and probably most obviously, is medication. Mandie was given prescription for antibiotics for the infection, which we had to take to our local compounding pharmacist to fill, in case they needed to make a form that was free of all of her allergens (including gluten), and so that they could make sure it would not interact with her other medications and supplements. A good pharmacist is absolutely essential for a person with allergies and/or celiac. As you can see, nothing is as simple as it seems.
Helpful info. Thanks Jen!
ReplyDeleteHi Jen,
ReplyDeleteWhat system do you use for the Medic Alert? Will Mandie wear a bracelet?
You brought up a really great point about having it and is usefulness and I need to get one for Abigail. Do you just have listed the ana allergies or do you go even further? Abigail gets hives from soy but has behavioral reactions to many others like coconut, sunflower etc in addition to Celiac. Can you share how you have it worded? Do you need to have a Dr. listed on it or is it something I can do on my own.
Thanks,
Michelle (Foodlab and KWC)
Michelle - I LOVE the MedicAlert system because it is a yearly membership that lets you change the info at ANY TIME. I have all of Mandie's allergies listed on the site (too many to fit on the ID tag). She has the stainless steel bracelet w/the pink logo. The reverse side says "Anaphylaxis to Multi-foods. Please Call Immediately!" The wallet card lists all of her allergens and the info about them (ie: ana allergies, hives, aggitation, mild allergy, etc.) The card also lists my allergist - though you don't have to do that. The card (and thus the info when a medical professional calls) lists her info, medications, conditions (celiac), and contact people. I really love the membership to MedicAlert because of how helpful they are to work with, and because you can update things as needed w/the system - and because all of her info wouldn't fit on a bracelet or tag or anything. We've used a sports style bracelet, and a silicone one, but both are a)easy to take off; and b)don't list all of her info. With the MedicAlert system I feel confident that if I were in an accident or not with her (such as when my mom watches the kids while I drive my bus) that all of her info is there and will be seen and related - regardless of if I give them her wallet card or not.
ReplyDeleteI forgot to add that she was not so nuts about it at first, especially wearing it in the shower, the pool, and to bed - but we explained to her why she needed it on all the time and she eventually got used to it and now shows it off to people when she even remembers it's there. We still use her silicone ones (from Mediband on her right wrist whenever we leave the house because it has her main allergens listed in red on a white band. (All but the wheat/gluten since we didn't know about that when we got them.)
ReplyDelete