- Welcome to Food Allergy Support.
Posted by jschwab
- October 27, 2013, 08:26:20 PMQuote from: LinksEtc on October 27, 2013, 07:46:41 PM
We have insurance that does not require referrals, but our primary docs give them to us anyway when they feel we should have them for health reasons. Having a good primary is like having a strong foundation that can be built off of in managing your health.
I know, I just can't find one and we decided to stop hopping around for awhile and just stick with a practice that is nearby. I had a good one for about a year a good while back and she actually died. They did not even send out a note to patients, I found out from the work colleague who sent me to her
. I had one quit taking insurance to go to a self-pay only practice (she actually almost killed my oldest when she was a newborn, but she was still better than the others!). I just pray a lot that the kids never get any hard to diagnose disorders. When I was a kid it seemed so easy. The receptionist would even call and make an appointment at the specialist and ask them to fit you in if it was something serious. And the doctor always knew that so and so was good for this or that and who specialized in what. I have not been in a doctors' office like that in years. My parents' doctor does all that for them but I think it's because they are older and there are more standard screenings that they need and age-related problems that come up frequently enough (he's not taking patients, by the way). Last year I had lyme diagnosed pretty quickly at this practice we are with and I got antibiotics quick which is critical for treating lyme. I am in the woods a lot and I hunt deer so it's nice to know they know lyme and that, honestly, is what's keeping us there for the moment. Some specialty areas are tough, too, to get an appointment in this area. Gyn is a four to six months's wait here, so if you have uterine cancer or want a breast lump checked out, you could basically be a goner before you ever get to see anyone. Posted by LinksEtc
- October 27, 2013, 07:46:41 PMWe have insurance that does not require referrals, but our primary docs give them to us anyway when they feel we should have them for health reasons. Having a good primary is like having a strong foundation that can be built off of in managing your health.
Posted by jschwab
- October 27, 2013, 06:42:32 PMQuote from: Macabre on October 27, 2013, 01:30:50 PM
For shrimp: I never ever eat grilled or fried food in a restaurant unless the chef can guarantee that it is a dedicated surfaces. They will say, "we clean the grill well," and I will ask of they cleaned it with bleach or soap and water, knowing they didn't (I wouldn't either). Also, many places fry shrimp in the same place they use for frying other things--like chips.
I'm guessing fryers also pose problem for milk.
Even though shellfish and nuts Te more common adult onset allergies, you can develop an allergy to any food.
Honestly, right now--and I am saying this as a person who developed allergies in 2005 as an adult And who has a 15 year old son with a peanut allergy, i would recommend living with it a bit before you worry about desensitization. Learn what's safe and what isn't--and how do be a sleuth at avoiding.
Everyone wants to get rid of this. But early on its good to do us on living with it.
Thanks for the advice
Shrimp and milk are my old allergens and I had it down to three restaurants I could trust. I've been able to avoid them pretty well with my only slip up in the past couple years being when someone stayed at our house while we were out of town 18 months ago. She must have slipped a butter knife in the peanut butter jar or something because when I ate a couple spoonfuls from it, I had a really bad reaction. It just killed me that I had a reaction in my own house eating my own food. That was the time my throat closed completely and we could not find the Epi and I freaked out because previous to that I had never had anything happen at home (until this stupid almond thing). And I know too well the restaurant roulette. I tried some new restaurants a couple times and reacted and gave up on it. It's hard because I have kids and I feel like I keep them in a prison, too, most of the time. I make myself take them to restaurants (I don't eat) just so they continue to have the experience. But they don't really get to try a lot of new, exciting foods very much. I am fine with the finality of the allergies - I was only asking about therapy because my doctor told me I could get allergy shots for food allergies (I think she was confused).Posted by jschwab
- October 27, 2013, 05:42:56 PMQuote from: LinksEtc on October 27, 2013, 01:00:17 PMQuote from: jschwab on October 25, 2013, 11:30:23 AM
My primary doctor handed me a prescription for epinephrine and told me to find a youtube video at home to figure out how to use it and that I did not need to see an allergist since they "can't do anything".
Is this your primary doc now? This would make me consider getting a different primary doc.
A good primary doc will know the value of referring to appropriate specialists.
I find that my older friends and my parents get good referrals to specialists from their doctors but I think this is the first real referral to a real doctor I've ever gotten. I've had doctors tell me if I find a specialist I want to see to have something checked out, they will write me a referral but I have never had a doctor tell me "go see X, he's good for y". They usually can't recommend anyone, they just think I should see someone. I usually just end up not seeing specialists because I hate doing the legwork myself. I also used to have the problem that I had a PPO where I did not need a referral to see a specialist so the primary wouldn't issue one, and then the specialist would not make an appointment without a referral so I was in a Catch-22 and I missed a lot of follow up care because of that. Once I had a sports injury that necessitates surgical repair and I was literally calling around to surgeons myself because my doctor would not recommend one. I can tell you there are not a lot of surgeons that just take patients in off the street. The one I needed was fine with copies of my MRI but I would have been really up a creek if not. I think that might have been how I ended up at the allergy practice I did - I think it was the only one that would take me without my primary being in touch with them. It's kind of nutty around here and there is a doctor shortage, so nobody is beating down anyone's door to get new patients.
Posted by jschwab
- October 27, 2013, 05:22:41 PMQuote from: LinksEtc on October 27, 2013, 01:41:56 PM
I did go back and read your story more.
I'm sorry to hear about your experiences with the first allergist & the paramedics. You are your best advocate.
I agree with Twinturbo about frogs ... We here can help you recognize when you might be dealing with one.
Finding a good allergist is extremely important - don't give up hope- there are lots of them out there. With a good allergist, tests like office food challenges can be extremely helpful in confirming true allergies. We have been through several.
Please be aware that just because some reactions may have resolved without epi, that doesn't mean future reactions will. If epi is not used in time, it has less of a chance to be effective. It sounds like those paramedics telling you it was anxiety were out of line. Get a good allergist, get a good allergy plan, and don't let others make you doubt yourself.
After the disbelieving paramedic dropped me off, the ER docs were really good and took it very seriously, so that left me feeling better that if it happens again or is more severe that I will get good care. I even sent the ER a thank-you note to let them know I appreciated it a lot. I looked really good when I got there but they took my report of what happened extremely seriously and were right on top of it when symptoms briefly returned (I guess the Epi wore off?). I was glad because I always half-assumed it would never be handled attentively in a busy ER unless I was passed out cold when I got there. They had a special stretcher next to the nurse's station in the hallway with a rounded mirror so that whoever was sitting there could be seen from a lot of vantage points. It looked to me like that was where they parked allergies and asthma cases for observation which was very cool. I can tell you I will not be afraid to use the Epi in the future and I would encourage everyone to not be afraid of it. I think especially with how much more severe this reaction was, and that it was nuts, and the severity of the subsequent accidental reactions this past month that it made me realize I was really dumb in the past. It was also such a relief to have the pen and just feel better right away. From the perspective of it working and making me feel better, it was such a relief. I have had reactions previously that resolved but that left me shattered for days because I had to kick in so much to battle it. I felt better in the aftermath of this than I had previously, I think.
Posted by LinksEtc
- October 27, 2013, 01:41:56 PMI did go back and read your story more.
I'm sorry to hear about your experiences with the first allergist & the paramedics. You are your best advocate.
I agree with Twinturbo about frogs ... We here can help you recognize when you might be dealing with one .
Finding a good allergist is extremely important - don't give up hope- there are lots of them out there. With a good allergist, tests like office food challenges can be extremely helpful in confirming true allergies. We have been through several.
Please be aware that just because some reactions may have resolved without epi, that doesn't mean future reactions will. If epi is not used in time, it has less of a chance to be effective. It sounds like those paramedics telling you it was anxiety were out of line. Get a good allergist, get a good allergy plan, and don't let others make you doubt yourself.
I'm sorry to hear about your experiences with the first allergist & the paramedics. You are your best advocate.
I agree with Twinturbo about frogs ... We here can help you recognize when you might be dealing with one
. Finding a good allergist is extremely important - don't give up hope- there are lots of them out there. With a good allergist, tests like office food challenges can be extremely helpful in confirming true allergies. We have been through several.
Please be aware that just because some reactions may have resolved without epi, that doesn't mean future reactions will. If epi is not used in time, it has less of a chance to be effective. It sounds like those paramedics telling you it was anxiety were out of line. Get a good allergist, get a good allergy plan, and don't let others make you doubt yourself.
Posted by Macabre
- October 27, 2013, 01:30:50 PMFor shrimp: I never ever eat grilled or fried food in a restaurant unless the chef can guarantee that it is a dedicated surfaces. They will say, "we clean the grill well," and I will ask of they cleaned it with bleach or soap and water, knowing they didn't (I wouldn't either). Also, many places fry shrimp in the same place they use for frying other things--like chips.
I'm guessing fryers also pose problem for milk.
Even though shellfish and nuts Te more common adult onset allergies, you can develop an allergy to any food.
Honestly, right now--and I am saying this as a person who developed allergies in 2005 as an adult And who has a 15 year old son with a peanut allergy, i would recommend living with it a bit before you worry about desensitization. Learn what's safe and what isn't--and how do be a sleuth at avoiding.
Everyone wants to get rid of this. But early on its good to do us on living with it.
I'm guessing fryers also pose problem for milk.
Even though shellfish and nuts Te more common adult onset allergies, you can develop an allergy to any food.
Honestly, right now--and I am saying this as a person who developed allergies in 2005 as an adult And who has a 15 year old son with a peanut allergy, i would recommend living with it a bit before you worry about desensitization. Learn what's safe and what isn't--and how do be a sleuth at avoiding.
Everyone wants to get rid of this. But early on its good to do us on living with it.
Posted by LinksEtc
- October 27, 2013, 01:11:55 PMQuote from: jschwab on October 24, 2013, 10:55:01 PM
Hi, I might have a few questions for awhile. So, I just had a major new allergic reaction to a new food. When I did my followup appointment (with a doc in the practice but not my regular doctor), she said that she sends her allergic patients to an allergist who gives shots for food allergies when I asked her if an allergist could help besides testing.
As I think the others mentioned - this was bad info ... reputable allergists are not currently doing shots for food allergy.
Posted by LinksEtc
- October 27, 2013, 01:00:17 PMQuote from: jschwab on October 25, 2013, 11:30:23 AM
My primary doctor handed me a prescription for epinephrine and told me to find a youtube video at home to figure out how to use it and that I did not need to see an allergist since they "can't do anything".
Is this your primary doc now? This would make me consider getting a different primary doc.
A good primary doc will know the value of referring to appropriate specialists.
Posted by LinksEtc
- October 27, 2013, 12:45:38 PMQuote from: jschwab on October 26, 2013, 06:11:06 PM
Just to be sure I am looking in the right place, is this the clinic you mean http://www.hopkinsmedicine.org/allergy?
Hi Jschwab,
I think you were looking at the adult site:
http://www.hopkinsmedicine.org/allergy/interests/
Here are the allergists at Hopkins' pediatric allergy.
http://www.hopkinschildrens.org/allergy-faculty.aspx
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Quote from: jschwab on October 26, 2013, 10:52:49 AM
I don't have a PPO now so I have to rely on the referral from the doctor and I'm not sure if I can just pick and choose who I go to like I used to be able to. As it was, this was a two month wait for this appointment, but maybe it doesn't matter since I have my Epi's in order and it's not clear that just any allergist will be able to help very much? I'm half a mind to just cancel so I don't get stuck in a rabbit hole again. I really, really, really hate going to doctors and would prefer to avoid it if possible.
For difficult cases, I would agree that Hopkins (at least pediatric) is worth the drive, but I'm not sure you're at that point yet. Am I correct that you haven't seen this Phili allergist yet? Do you have any reason to doubt that this particular allergist would not be able to help you sufficiently? Is this a board certified allergist having significant experience with FA?
You sound like you could really benefit from an allergist's help ASAP so I'd hate for you to cancel an appointment unless you have good reason to doubt that this local allergist will be able to help you. It doesn't sound like you are interested at this time in participating in research such as desensitization, so cutting edge research doesn't need to figure in to your decision making so much right now.
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Do you have a food allergy action plan that is signed by your doctor?
For example:
http://www.foodallergy.org/document.doc?id=234
Do you now always carry epi & are you prepared to recognize symptoms of an allergic reaction and treat accordingly?
Start with the basics ... don't get ahead of yourself worrying about stuff like OIT or SLIT.
Posted by jschwab
- October 27, 2013, 11:12:18 AMQuote from: lakeswimr on October 27, 2013, 09:34:50 AM
Have you had anything with peach since? Some people have such bad oral allergy syndrome that it can produce some throat swelling. I wonder if that might have been the cause? Oral Allergy Syndrome rarely requires the epi pen but sometimes it does in people who get throat swelling.
I don't know much about OAS. I have a few friends who have it who cannot eat uncooked fruit without their mouth swelling. This did come on at the height of fruiting for tree nuts in my area. There are walnuts laying all over the ground where I bike and my backyard is littered with gingkoes (which I'd be roasting if it weren't for this - I hate seeing them go to waste!). I have not had peaches since the attack, but I have eaten apricots, apples, pears and tons of bananas with no problem. Does OAS usually lead to other symptoms of anaphylaxis like drop in blood pressure and hives?
Posted by jschwab
- October 27, 2013, 11:05:33 AMQuote from: twinturbo on October 27, 2013, 09:09:58 AM
Let's play guess a Philly allergist with five minutes of Google. http://www.philadelphia-allergy.com
AAAAI.org lists him board certified sees both pediatric and adults participating in continuing education with other allergists through AAAAI.org's education feature which I guess shouldn't be visible to the public but someone there messed up permissions on individual file retrievals.
He's got at least one paper (I think he was lead author hard to read on phone screen) on anti-IgE, and no matter where I look I can't find a bad review on the man. I don't know if this is the guy you saw but on paper he's very promising.
And if you want to email him first I grabbed his address from the AAAAI.org education file. Not always the best way but it was there.
Oh yeah, he looks much better. I would not have noticed him in the long list of indistinguishable practices. He is not the person I saw. It sounds like it would be easier to call and get a read on a single-person practice than one of the big practices.
Posted by lakeswimr
- October 27, 2013, 09:34:50 AMHave you had anything with peach since? Some people have such bad oral allergy syndrome that it can produce some throat swelling. I wonder if that might have been the cause? Oral Allergy Syndrome rarely requires the epi pen but sometimes it does in people who get throat swelling.
Posted by twinturbo
- October 27, 2013, 09:09:58 AMLet's play guess a Philly allergist with five minutes of Google. http://www.philadelphia-allergy.com
AAAAI.org lists him board certified sees both pediatric and adults participating in continuing education with other allergists through AAAAI.org's education feature which I guess shouldn't be visible to the public but someone there messed up permissions on individual file retrievals.
He's got at least one paper (I think he was lead author hard to read on phone screen) on anti-IgE, and no matter where I look I can't find a bad review on the man. I don't know if this is the guy you saw but on paper he's very promising.
And if you want to email him first I grabbed his address from the AAAAI.org education file. Not always the best way but it was there.
AAAAI.org lists him board certified sees both pediatric and adults participating in continuing education with other allergists through AAAAI.org's education feature which I guess shouldn't be visible to the public but someone there messed up permissions on individual file retrievals.
He's got at least one paper (I think he was lead author hard to read on phone screen) on anti-IgE, and no matter where I look I can't find a bad review on the man. I don't know if this is the guy you saw but on paper he's very promising.
And if you want to email him first I grabbed his address from the AAAAI.org education file. Not always the best way but it was there.
Posted by rebekahc
- October 26, 2013, 08:20:11 PMThe doctor mentioned earlier is Robert Wood, but he's pediatric @ Hopkins Children's Center. It's usually quiet here on the weekends, so you may have more Philly area people chime in Monday.