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Contrary to my promise to do so, I haven’t updated my blog in a few weeks.  But, don’t worry.  It isn’t because I haven’t been writing.

I wrote a short story that, while still a work in progress, is a good first start and perhaps, something that I’ll submit somewhere someday.  I need more defined goals, don’t I?

Last weekend, I took Bear back to my hometown for the first time since March.  I am always amazed at how when I first arrive, my rural little hometown feels so foreign.  After half a day there, though, it begins to feel familiar again.  The first morning we spent there, I put Bear in her jogging stroller and took a twenty minute walk across town to visit my grandmother.  My hometown is flat with few trees in comparison to where I now live.  I reveled at how it was so quiet and peaceful that I could hear a car driving down the street three blocks away, and if I turned my head in time, I could clearly see it pass between houses.  As I walked, I could easily tell who was home, and even hear moms talking to small children inside their houses as I passed.  Sound carries easily there without the trees to soak it up and other sounds to drown it out.  On our walk back, I thought about how all of the familiar names on realty signs and inscribed into rocks in front of houses now belonged to my classmates rather than their parents.  Later, when we went downtown to shop, I was amazed how some people (mostly those from my parents’ generation) so enthusiastically welcomed me and how others (mostly those from my generation) looked at me like I was the prodigal son returning home and they were his brother.

On Sunday, Bear battled stomach issues that I am fairly certain can be traced to some mystery zucchini bread that a lady in a hometown clothing store gave to my grandmother with Alzheimer’s, who then gave to Bear while my back was turned.  There were a few exciting minutes that my aunt spent frantically digging pieces out of  my daughter’s mouth.  Bear spent most of the next day with some nasty diapers and had periods where she cried and beat on her tummy, crying “Owie!”  Her response reminded me why I work so hard to only give her food that I know will not cause her to react.

Yesterday, after several good days at daycare, Bear came down with a fever.  She also began using her new, favorite word “owie” indiscriminately, so while we knew that something was hurting her, it was impossible to tell what.   At first, she would pull up her pant legs and hit her knees and saying “Owie.”  Then, during diaper changes, she would say “owie.”  She would also open her mouth to say something, and a huge bubble of saliva would come out instead.  These symptoms, along with her fever, seemed concerning, so I called the pediatrician’s office and her allergist’s to see if he would call in a prescription for some compounded non-soy containing Tylenol-type medication.   Around 6:00 last night, Bear began acting strangely.  She couldn’t seem to keep her eyes open, and she was moaning softly.  This, of course, scared me, and I immediately took her to her pediatrician’s after-hours clinic.  By the time we arrived, her fever had reached 104.  Despite enduring a strep culture and a catheter to obtain a urine sample, we left without any answers. Her pediatrician promised that a high fever wouldn’t “boil her brains” but acted annoyed that her allergist wouldn’t let us give her generic painkillers that contained soy.  I was annoyed that he was annoyed, but mostly I was tired and sad that my daughter was still not well and that we didn’t have any way to help her.

Fortunately, Bear’s fever broke last night.  She has not felt well today, but the absence of the fever has greatly improved her spirits.  She seems hungry but doesn’t want to eat.  She continues to have strange drooling issues and to say “owie” when I change her diaper.  She has also started telling me that her hand hurts.  We think that she has Hand, Foot, and Mouth Disease, but until blisters start forming, we won’t know for sure.  She seemed happy to take a nap, and for now, is sleeping peacefully, and I am still waiting for a call from the compounded pharmacy that someone has made a painkiller that my little girl can safely take.  However, I am hoping that we’ve passed through the worst.

Our new companion

 

A new friend of mine told me today, “don’t go looking for trouble,” in response to some questions that I was asking about food allergies, since we are frantically trying to educate ourselves on this topic.  

Two days ago, a nurse from Bear’s new pediatrician’s office called with the results of her CAP RAST, a blood test that the pediatrician ordered to give us a better understanding of some foods that Bear might be allergic to, in light of the soy milk debacle.  Although we are still trying to understand what all of this means, as the world of allergies seems to be a great unknown where nothing is black and white, her pediatrician believes that she has an allergy to soy and likely has an allergy to peanuts.  The test results and her reaction to soy necessitate keeping an EpiPen with her at all times.  Until we know more about her allergy, keeping her away from all soy will be quite difficult.  I suggest that you take a look at food labels next time you are in the grocery store.  Soy and its derivatives are in most processed foods.  

I have been living and breathing food allergies for the past several days, and I will not even attempt to share what I’ve learned here.  Frankly, I’m a little weary of it.  

However, I have “met” some wonderful people over at www.kidswithfoodallergies.org, and they have been more than willing to share their knowledge with me, probably because they remember feeling exactly as I do now.  

When we introduced solid food to Bear, we followed the basic “rules” about solids.  We waited a week after introducing a new food.  We did not give her the big “no-no’s” of nuts, honey, and milk prior to when we were given the OK by her pediatrician.  We still haven’t knowingly given Bear nuts or honey, but I suppose that does not mean that she hasn’t encountered the food in some other way, perhaps prior to birth or through my breastmilk or cross-contamination or at daycare.  Neither my husband nor I have significant food allergies.  We have some family history of some minor food allergies, and I am allergic to certain drugs and a variety of other non-food items, but we were blissfully unaware that this did not really matter.  We had no reason to suspect that Bear would have a major food allergy.  

I feel like we went “looking for trouble” when we gave her soy milk in the first place, since we were concerned that she wasn’t digesting milk well.  Even if we couldn’t have known that we were “looking for trouble,” trouble found us.

Is it strange that I care what Bear’s doctor thinks of me?

I have internalized this fear, since childhood most likely, that unless I have an illness with a tangible symptom that leaves no doubt to the observer that something is amiss, that doctors will think that I am making up my problems.  It doesn’t help that the primary issues that I have been afflicted with have few tangible signs:  migraines (oh, you have a headache, people will ask?), polycystic ovarian syndrome (for me, a diagnosis based on the exclusion of other causes), and during pregnancy, unexplained bleeding (that was, well, unexplained).

Poor Bear is now bearing the ill effects of my insecurity.  I have no doubt that the response I received from her pediatrician when I called last week about my concerns regarding her digestive issues would have irked anyone.  But, a small part of me wonders if I am dwelling unnecessarily on issues that are not that big of a deal – that other parents wouldn’t think twice about – and therefore, the doctor’s annoyance with me was justified.  This said, Bear is clearly uncomfortable.  She beat on her belly the other night, right before we found floaters in the tub and after refusing dinner.  She wakes up from deep sleep to pull her little legs up to her belly.  She has bowel movements all day long.  And, of course, she reacted quite spectacularly and frighteningly to soy milk.  My mothering instincts, fledgling though they may be, tell me that something is not right, even if the problem is something minor, like consuming too much  milk at one time.

I took Bear to a new pediatrician today.  This doctor actually saw her in the hospital after she was born.  He is famously laid-back and also famously personable, and he was very nice to Bear today.  He did not seem overly concerned about Bear’s trouble with milk, and despite my continual back-pedaling and apologizes, he ordered a blood test so we can uncover any food allergies that she might have.

Although, this test is not exact and will not answer the question of whether Bear is intolerant to certain foods, it is a starting point.  And, I appreciate that, even if I am completely wrong about the cause of Bear’s symptoms, at least the doctor was willing to suggest something constructive.  Now, if I can just let go of my concern that he thinks that I am going to be a problem parent so that my idiosyncracies don’t make me one.

 

I will apologize upfront if this post turns into a gory discussion of poopy.  That is not my intention.  But for about three weeks, Bear has been having strange and frequent bowel movements.  I will spare you the details, but this change coincided with the culmination of her transition to whole cow’s milk.  Once we had stopped nursing and stopped giving her bottles with formula (which was also cow’s milk-based, by the way) and started giving her bottles of only cow’s milk, her trouble started.  And, nearly every time I change her diaper, I see trouble staring back at me.

Last week, I called her pediatrician’s office about my suspicions that Bear may not be tolerating milk well, and after describing Bear’s symptoms to the nurse, who later described them to the doctor, their consensus was that Bear had a virus.  I was told to call back in a few days if things didn’t clear up.

Today – one week later – I called again.  I described the same symptoms to a different nurse, who apparently had another discussion about them with the doctor.  Again, the consensus was that Bear had a virus.  This time, the nurse, who kept referring to Bear as “he,” told me not to worry too much about this, offered the suggestion that I cut back on the amount of milk that I give to “him” and told me to buy a probiotic to help replenish the good bacteria in Bear’s gut that this mystery virus had cleared out.  I did not share with her that I’d had a similar discussion last summer with a nurse in her office about probiotics and that the nurse told me then that Bear’s pediatrician never recommended probiotics.

At nap time, I decided to give Bear a little soy milk to see if she would tolerate it better than cow’s milk, andin hopes that we could go a few hours without a dirty diaper.  She drank down about four ounces and rolled onto her side for a nap, so I carried her to her crib and left her to sleep.

After a few minutes, I heard coughing.  Then, more coughing.  And a few minutes after that, Bear began crying hysterically.  I walked into her room our found her sitting in the corner of her crib covered with white vomit.  She continued coughing and produced strings of thick mucous.  After a bath, I dressed her again – still crying – and she continued coughing up mucous.  She puked again, and then I noticed that her face was covered with a red rash.  She continued coughing and began pulling at her tongue.

I REALLY did not want to call her pediatrician’s office in light of the helpful response that I had received early in the afternoon, but I was concerned that my daughter was having a real allergic reaction, and I was on the verge of putting her into the car and taking her to the hospital.  A different nurse called me back, and I quickly explained the issue, including all that I had been told by the other nurse earlier in the day.  This nurse agreed that it sounded like Bear was having an allergic reaction and asked concerned questions about her possible lactose intolerance as well.  She agreed to call me back after talking with the doctor.

When I received a call back, it was the same nurse but now with a completely different demeanor.   She told me that the doctor said that she had “dealt with the problem this morning” and advised me to try the soy milk again this evening to observe the response (like my daughter is a science experiment).  When I asked if she was certain that I would not be sending my daughter into anaphylactic shock, she tersely answered, “I’m just repeating what the doctor told me.”

I feel badly enough that I inflicted the soy disaster on Bear in the first place, and I am in no mood to do it again tonight.  We did offer her a little (with Benadryl in hand), but she refused to take anything more than a sip.  Smart girl.  Tomorrow, I’ll be taking her in to visit the doctor to see this issue through, and then I’ll be in the market for a new pediatrician.