First, his Iron levels: His hemoglobin (his basic iron level) was at 11... last time we had it done it was 9, so this is a great sign. It takes a LONG time for iron to build up enough in the system to show a change on tested levels. 11 is within the "normal" range though it's still on the "low-to-normal" side. They also tested his "stores" which is the important part... She said normal for him would be over 40. She said they consider 40 to be pretty low and would like to see something between 40-100. Asher's stores are at 5. Not 50, just FIVE. It's frustrating but not surprising because if his stores were completely depleted as they obviously were (and are), it takes a LONG LONG LONG time to build them back up. He's been on this horrific iron supplement since very early September. Dr. O suggested to double his daily intake (which I don't plan to do because I'm not comfortable with it, though I will try to slowly bump him up some). She suggested doing this for 3-6 more months then testing the stores again. The dosage originally prescribed is listed on the bottle at 150% of the daily allowance, and this doesn't account for iron in his diet. She's suggesting giving him via liquid supplement 300% of his daily allowance not accounting for food. Kids can die from iron poisoning, though she says it's very rare and they have to drink the whole bottle (though there's a warning of poisoning right on the package). UGH. He's been off his formula for some time, and that significantly dropped his iron intake since the formula was fortified with iron and his soy milk is NOT. I switched back to baby oatmeal cereal instead of just plain rolled oats since the baby oatmeal is iron fortified. He doesn't get a ton of iron in his diet, I know this, but he gets some, and with the supplement it's curious to me that the stores would still be entirely depleted. I know it takes time to build up, everything I've read suggests that, but part of me has an aching wonder about an underlying cause of absorption. I've done a TON of research on food allergies and intolerances. Many things I have found suggest that a serious intolerance (not even full blown allergy) can cause otherwise unexplained iron-deficiency anemia, which is Asher's exact diagnosis. Apparently if you have a severe intolerance or allergy, your body treats that food as a foreign object, or as a sickness it needs to expel. Because of this, your body does NOT process the food properly, and thereby does NOT absorb or benefit from the nutrients in the food, which would then explain an iron deficiency, slowed growth rate, etc. Something isn't right here, and I intend to get to the bottom of it.
Asher also was tested for a "childhood allergy panel" with the addition of corn at my request (this tests major allergens like soy, dairy, wheat, shellfish, eggs, nuts). He tested negative for them all. I'm frustrated but not at all surprised. Everything I've read suggests that LESS than 5% of kids that have a hard time with foods have a full blown allergy to it. The doctor told me the same thing. This tests only full-blown allergies that would cause massive swelling of the airway, anaphylaxis, extreme reaction, etc. It didn't test allergies to the protein in the foods (which kids can have), and it doesn't test for intolerances... so basically it was a rule out and it's fairly useless. It's great to know he won't go into anaphylactic shock from the foods tested, but we only know that for sure from the foods on the list that he's been exposed to. Foods like shellfish and nuts he hasn't had since they are high on the allergen list, and since reactions can be life-threatening. His cousins are all dangerously allergic to nuts (as is my sister) and since there can be a genetic component we've never introduced them (peanuts aren't supposed to be introduced this early anyway even without suspicion of allergy). SO, just because he's negative on this test doesn't mean his throat couldn't swell shut if we gave him peanut butter ;( kids can't typically have a strong positive reaction to these tests without having been exposed to that food previously, so the test isn't conclusive for the things he hasn't yet been exposed to. Allergies can also develop later and change, so it's kind of a crap shoot unfortunately. My brother and sister both have allergies that have changed over the years, as do I... so it's something we just always have to look out for. Since he didn't test positive to anything, Dr. O suggested that we are open with his diet meaning not limiting corn products and also trying to reintroduce dairy at some point if we so choose (soy milk has MORE calcium and vitamin D than cows milk). She said he doesn't need dairy ever, but if we want to try again in the future, she said just to do it slowly. I don't intend to try for some time, as last time I did, it was VERY clear he could NOT tolerate it after only 2 days. If you want a challenge try feeding a toddler with food intolerances. ;( Asher's growth has plummeted and although he was very mobile at a very early age, I'm not sure that explains it all away. He's very thin despite me feeding him constantly. He has tiny, skinny little legs and arms, and a very flat bottom ;( By the end of the day, his belly is distended like a malnourished little African child that you would see being exploited on an infomercial. He's crabby often, doesn't sleep well much of the time, seems constantly fatigued despite sleeping and napping, and often times has dark circles under his little eyes. ALL OF THESE THINGS point to a problem with digestion/ nourishment. I've read a LOT about it. I'm not sure if the protruding bump/hernia has anything to do with it, but we will ask the surgeon. Something is plaguing the little man, and I intend to find out what it is. Poor bubs. Despite it all, for the most part, he's a happy, brilliant, sweet little pumpkin.
Now for me... even more disheartening news. I went to the Rheumatologist again. It did NOT go well. To say that I was PISSED when I left would be a massive understatement. The nurse that was nasty last time was still not nice, but tolerable. The Dr., however, was not as kind and patient as she was the first time. This time she walked in the door with an attitude and was rushed. I would guess that she was with me for LESS than 3 minutes total. She acted irritated as to why I was there. I told her that I had been experiencing some GI issues since before Asher was born, ones that worsened after he was born, and continued in a chronic manner EVERY SINGLE DAY since... even post surgery. I originally attributed it to the loss of an organ, as I read that many people suffer post gallbladder removal GI symptoms for life. I altered my diet a bit and it didn't help, the GI stuff remained chronic. I told her this at my first visit, but told her I wanted to see her again because I've recently discovered that there very well may be a correlation. I told here there was a variety of other stuff going on in conjunction with the chronic GI stuff and the chronic (and progressive) joint pain. I have pain (sometimes fairly severe) in my elbows, hips, and knees EVERY single day. In the morning, also in my shoulders and ankles. SOMETHING IS WRONG. This is not just a minor ache or pain here or there. It's daily and it's progressive. The morning sucks and late at night before bed is the worst. Once I stop moving for the day, it's allllll downhill. I have pain and numbness extending to my fingers and down my legs. I am chronically fatigued like I cannot even explain to you. More so than I've even been in life including the early, "hell on earth" days with Asher. Between the chronic GI stuff, the chronic fatigue, and chronic pain, my days are difficult at best. Clearly this leads to a depressed and frustrated feeling as well. I'm not complaining for sympathy or attention, but just to convey how pissed I am about not finding anyone who cares enough to help me. The doctor was dismissive and irritated. She told me I should have just followed up with my primary doctor, even after I told her I wanted to talk to her because I was concerned the GI stuff and the joint pain were linked, and after all, she was a specialist in joint pain and associated diseases. I cried for the entire 25 minute drive home.
I've done a ton of research, as always. It seems that I have MANY of the symptoms that go along with gluten issues, which she didn't even give me the time to discuss. From what I've read, it seems that gluten issues can cause the exact GI stuff I'm experiencing (and have been for a year and a half), as well as chronic fatigue, debilitating joint pain, and... wait for it, gallbladder malfunction/failure (not to mention many more). Worth looking into, wouldn't you say?! I'm going to call her Dr. Tomato now, because that's how helpful she was this time around. Patronizing and dismissive, which is NOT helpful to say the least. It's condescending and insulting. Am I a physician?? NO. But I AM a proactive, intelligent, and educated person who thinks critically and is fiercely passionate and driven to find answers. She said that she "noted" last time that she wanted me to follow up with my primary care for depression medication to help with the pain, and she asked me if I had... WHAT?! UM. NO. We never had that discussion, so apparently she left a notation in the chart and failed to discuss it with the patient. I told her she never told me to do that, then questioned what kind of a suggestion that was. She explained how the neurotransmitters that control pain are the same ones (or associated with the same ones) that regulate mood/depression. She said that many people with chronic pain benefit and get relief from taking a certain antidepressant medication. I asked which one... she said Cymbalta. HMMMM. Ok, let's pretend I want to take it (I don't)... I mean, who in the general population wouldn't benefit from a mood stabilizer of some sort??!!??!!?? Seriously. I'm SURE it would help, and I'm sure it helps in numbing pain. Here's the thing... why don't we actually find the source of the pain instead of just blindly treating symptoms indefinitely with an addictive medication for a condition that will remain chronic?! I'm a Licensed Clinical Social Worker. Of all people, I know that there is a proper time and place for psychotropic medication. I have had many a client truly need it and benefit from it in order to be a fully functioning participant of society. I'm not against psychotropic meds. What I'm against is throwing drugs at a problem that seems too messy or difficult to deal with head on. She also suggested seeing my primary care for medication that can help with my GI stuff. The "medication" is basically straight cholesterol... Cholesterol that I would be intentionally ingesting to help my gut function. Here's the thing, AGAIN. WHY would I do that without knowing the cause of my symptoms?! Freaking crazy lady. I really liked her, and I trusted her... before this. She begrudgingly ordered a huge panel of blood work that will take a few weeks to get the results from (much of the stuff she tested last time with a few more added in to pacify me apparently). She said she would write the order for it, but made sure to say, "but I know we aren't going to find anything". She went on to say that she wants to see me back in a year (assuming the tests are all clean), and after that, she wants to discharge me to "allow me to move on with my life and not have the positive ANA test result (the reason I was referred to a specialist in the first place) hanging over my head." She said I may have just gotten a false positive... but again, from what I've read, it seems the only false positives for that test happen to the elderly and those on a specific medication. UGH.
I plan to wait for the results, then to follow up with my primary care doctor (who is MUCH more patient and helpful, at least from my one interaction with her!). I only saw her the one time, but she was young, seemingly new to the field, and seemed eager to truly help the patient rather than to just throw drugs at a person. I guess I will see if that first impression holds true. I intend to see her to discuss the possibility of a gluten intolerance causing all of this terrible crap, if that could be what's been plaguing me all along. I have no intention of seeing her just to get some drugs, as I believe for myself, long term medication is the last result after all other avenues are pursued and exhausted, and after we truly have no idea what is causing all of this. I know that with any autoimmune disorder (RA, lupus, celiac disease, etc), it takes YEARS to get a diagnosis. Not that I want to be diagnosed with anything, I'm just SO tired of being plagued. I intend to insist on a gluten intolerance panel of bloodwork. I have an appointment with her in a few weeks once I get the results from the useless Rheumatologist back. If I don't get anywhere with the primary care doc, I have another doctor already selected. My sister's friend sees a Doctor of Osteopathic Medicine, and she takes her kids to this doctor as well. Now, don't be fooled, not all DOs practice in the true form (many hold the DO degree but practice as conventional MDs, I found this out when searching for a DO for Asher, which I never found). This doctor practices alternatively, but has the same education as an MD, so she's legit and not only into "voodoo" medicine as some might see it ;) They love her and I'm excited to try to meet with her to look into an alternative approach to blindly masking chronic issues with drugs that aren't even associated for the problem! The only catch is that she's in a different suburb and it will be a bit of a hike to see her... if she were closer, I probably would have chosen her to be Asher's pediatrician back when we moved here (she's a family doctor). I still might consider taking him to see her at some point, but I do like Dr. O and she's MUCH MUCH closer than this DO, which will make a difference when I have to take a sick screaming baby to the doctor by myself (10 min drive vs 40). We shall see. Do you have any idea how disturbing it is to have a gut-feeling, a gnawing, aching concern that something is off, but you can't figure out what, and nobody else seems too concerned about it?! I have a hard time verbalizing how infuriating and terrifying it is all at the same time. Asher and I have matching puncture sites and bruises on our arms from massive blood draws that were days apart. and nothing to freaking show for it. That's all for now. I need to decompress.
Pictures:
Asher got his first haircut! I did it myself... I was debating on taking him to a kid salon (which I plan to), but there was just one piece bothering him and getting in his eye so I thought I'd just cut that one little lock off and call it good for now :) Here's a before and after!
Asher finally got to play in the snow for the first time! It's the first time this winter where there's been snow in the ground, the temperature is safe for him, and he's not been sick! He LOVED it. For less than 3 minutes ;) I also have an amazing and adorable video of Asher narrating a pop-up book but apparently it's too long for blogger to handle. stupid blogger.
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