Food Allergy Anxiety in 10yo

[MaryM]

The allergist wants her to se a GI to rule our reflux and  eosinophilic esophagitis.  I do not think its eosinophilic esophagitis - she doesn't have stomach aches often is really nauseous and hasn't thrown up in years.  It could be reflux.  It could be from our terribly unbalanced and rich diet during the holidays.  I will call the pediatrician on Monday for a refereral.  She also gave me the name of a therapist about 40 minutes  from here which is much better than 2 hours and a trip into NYC.

[MaryM]

Well after about 4 weeks on the reflux meds DD is still having the feeling of a lump in her throat just not everyday like she was.  I spoke to the GI's nurse today and we have to schedule an Upper GI for her.  That should be fun.  I will call tomorrow to set that up.  I really hope everything is negative.  I cannot imagine what we will do if its EE and she loses wheat or soy....O know we could manage but it will be a huge learning curve. 

[GoingNuts]

 

[PurpleCat]

Hoping for good results.  And an easy time of the test for your DD.

[becca]

 

[GoingNuts]

Do you have a date yet, Mary?

[MaryM]

I have to call to schedule tomorrow. Not looking forward to this.  We have an allergist appointment in April, so it will be good to have it done and hopefully have some idea of where we are before we that.

[ctmartin]

HI, MaryM ... Just saw this and wanted to add my experience, though not sure it will help, it might be something to consider.  A little over two years ago (at Christmastime as well), I woke up with the same feeling ... a lump in my throat, and severe anxiety because of it.  I finally got in to see a GP who did an EKG at my insistence (by this time I had chest heaviness as well, but I suspect that was the anxiety) and he told me he suspected acid reflux.  I was in disbelief, as I never had anything remotely related to acid reflux, and was sure, again, due to my anxious nature, that it was something very serious (I had recently been exposed and had gotten sick from human parvovirus B19 and was sure it had wreaked havoc on my system).

Long story short, I went through 6 long months of doctor upon doctor, some well-meaning, and some just plain negligent (like the one who told me I had selective deficiency to parvovirus and I would eventually die from it).  The symptoms that remained constant were the lump feeling in my throat, constant nausea (I could not eat anything and lost 15 pounds in a matter of weeks) and severe anxiety, which quickly led to sleeplessness and depression.

I had an endoscopy and they did not find anything, which caused me even more panic.  In the end, I went back to the doctor I respected the most, who gave me this advice:  stop seeing doctors, go on the OTC prilosec the original doctor had prescribed, and CHILL OUT!  I did just that, and felt tremendously better within a couple of weeks, but not perfect.  The doctor assured me that it may take a bit longer.  Finally, after 6 weeks, I asked the doctor if I could come off of the meds ... I had no intention of being on prilosec for the rest of my life ... and he said yes.  It has been 19 months now and I haven't taken a single antacid or had any symptom remotely resembling what I was experiencing.  It was as if it were all a bad dream.

I write this here and now because I think there is just so much more that needs to be written and researched about the tremendous amount of anxiety we as  parents and caregivers and our children must face when having to deal with LTFA on a daily basis.  I had had a particularly tumultuous year, with both positive and negative events, and then we had to switch schools.  We went from a completely loving and respectful community WRT food allergies, to a clueless and bullying atmosphere and it just pushed me over the edge.  My doctor told me that I was so caught up in the constant fight or flight response, that it had made me completely unable to gain a healthy perspective on anything (i.e. why I refused to believe it was reflux vs. let's say, cancer).

Again, I am not sure if this will help, but if you find that you have not received answers from medical tests, perhaps you can continue to assess the role of anxiety in your daughter's life.  Coincidentally, I came to the board tonight to see if I could find anything about anxiety, because my daughter came home last night from a night out at a gymnastics place and was in near hysterics because she was upset that kids were eating peanut snacks from the vending machine and returning to the equipment without washing their hands.  She even found a wrapper in her cubbyhole.  While I understand her concern, her reaction was a little extreme ... she was distraught, and it seemed to have come out of nowhere ... and I feel that she is dangling on that precipice of young adulthood, where she is realizing that she is going to have to take ultimate responsibility of her allergies, and she is not sure if she is ready or able to do so, hence the anxiety and emotion.  That, and, of course, puberty!

Good luck to you.  I hope you find the answers you are looking for.  Our kids have so much on their plates, bless their hearts.

[MaryM]

Hi Ct - I am so sorry you have been having such a hard time.  I am glad that you seem to be feeling better.  Our GI is really fantastic and he did say that what DD is feeling could be caused by anxiety.  But we have to rule out EoE bc if it isn't anxiety and it is EoE we need to figure out what food is causing it.  My allergist is at Mt. Sinai and they actually have a group of counselors who specialize in people with food allergies.  DD went once.  Since we live about 2 hours from NYC I did get the name of someone who is a bit closer who deals with food allergy anxiety.  I am keeping that in  my back pocket for now but am really glad my allergist knew of someone closer to home.

I am sorry your DD is feeling anxious too.  I actually think part of the rise in my DD's anxiety about food is the fact that she is getting older (10) too.  She seems to be doing ok lately and actually has not complained about the limo in her throat for about a week now which is awesome!

Edited to add that I got DD an appointment for Friday morning.  The nurse is looking into the Barium ingredients to make sure its ok for her allergies.  Ugh.  I know she's going to be a nervous wreck about drinking it.

[ctmartin]

That's funny ... we have an allergist at Mt Sinai as well (Dr. Chokshi) who suggested that we see a counselor there, but since we are not local we did not have the additional time outside of our scheduled allergy appointment to do it.  Did your daughter benefit from it?  If my daughter's anxiety continues to worsen, I may go that route as well and try to find someone local (not sure when we will make it up to Mt. Sinai again).  Coincidentally, this is something my daughter says she is interested in pursuing as a career

Good luck to you both!  I hope you find the answers you need!!

[MaryM]

It did help.  We only went once but my DD did much better for quite awhile.  I'd ask your allergist if they can recommend someone closer to where you live.  We see Dr. Nowak and she gave me the name of someone about 35 minutes from my home.  There is no way we could go to NYC for therapy...

[MaryM]

Upper GI  results were normal.  Good news.  DD's symptoms seem better - it has gone from complaints everyday to maybe once a week.  The GI nurse called to give me the results.  She is checking with the doctor to see what our next step is.  Hopefully it will be to just continue with the reflux meds.