Appointment with the new GI was AWFUL!

Emily's history was taken by a medical student. This didn't bother me at all, but what happened next did. Em was stinky, so I put her on the table to change her. The student literally took over and changed her diaper. The manner in which he did this made me very uncomfortable, and I kept trying to wedge in there, but he was saying he had a 14mo daughter of his own, he was used to this. When ever I have changed a stinky or witnessed someone else changing a stinky, it was relatively quick, not a long, drawn-out process that this was. I got the impression he was enjoying it. This was a time where I will kick myself forever for not being more assertive by taking her away from him.

The student left with Em's history (including the print out that I posted below) to consult with the doctor. She came in, felt Emily's tummy, and left to get the dietician. The dietician came in and suggested yet another type of Neocate (despite the history of blood in stool after our last JR trial). She said that there is no way Em could be reacting to Neocate because it is elemental and has no allergens in it. (Exact same speech I got from the Neocate company.) I'm supposed to try the juice box version (E028) once per day. She asked about crackers, I mentioned that she reacts to all that she has tried, very recently Goldfish, and she told me to try animal crackers. I'm also supposed to add butter, white rice, turkey and chicken. (I will try rice again, and introduce chicken and turkey.) We talked a bit about offering diluted juice and offering new foods many times because Emily is at the age where she will naturally refuse new things.

The doctor came back in and said, "Part of being a social human is to eat with other people." She then basically lectured me about offering food to Emily, and that I may have to present a new food 20x or more until she takes it. (DUH!) She totally disregarded my statement that Emily WANTS TO EAT, she just reacts to EVERYTHING now! She told me she thought that the rash was due to bile acids, not an allergic reaction. I asked her not to discount the allergy factor because our son's main physical reaction to an allergen was a severe diaper rash. I gave the example that when our son was exposed to my sister's dog while we were visiting her, he broke out into this same type of rash. (Our son is severely allergic to animals.) She actually laughed in my face about that. (What's FUNNY is that when we removed the allergen in both cases--JR for Emily and the dog for our son, THE RASH WENT AWAY!) The doctor never asked about Emily's bloodwork or prior tests, and she did not even mention any other testing. She also never brought back up the blood or diarrhea and vomiting--NOTHING!

Emily's follow-up appointment with her is in FOUR MONTHS! I just don't know how this doctor could read Em's history, never really ask about anything, and then come to the conclusion that we should just start feeding her. AS IF WE HAVE NOT BEEN TRYING TO FEED HER!

I left the appointment and called my husband in tears. Why can't we find someone to help us?

Emily's Brief History

This is the information that I typed up and brought to the new GI appt:

Pregnancy and delivery:
- Maternal infections treated with antibiotics-BV, bronchiolitis, UTI, GBS+
- Preterm labor treated with Terbutaline, bedrest from approx 20 weeks
- Phenergan and Zofran throughout, Ambien as needed throughout
- Induced birth at 37 weeks, no complications

Newborn:
- at 1 week check, pedi noted that anus was small, not worrisome, labial adhesions (continuing)
-Jaundice, hospitalized at 5 days old, phototherapy, breastmilk interrupted for 24hrs with Nutramigen
- extremely fussy baby, treated for reflux around 6 weeks-Zantac, improved, removed around 4mo
- stools never seedy, mucousy
- thrush (continuing)

5 months to 10 months:
- At 5mo tried cereal, okay for 2 days, 3rd day bloating, tummy pain, vomiting, gas, even plain rice cereal caused issues
- 6mo, again extremely irritable, given Axid-complete 180-happy baby! Still unable to handle cereal after 2 days
- 6mo check-up, referred to GI for possible FTT and food issues.
- 8mo, first appt with GI, advised to supplement with Pregestimil 2oz/day. Dx with FTT, slightly stunted and wasted, switched to Pepcid, ordered upper GI for reflux (negative)

Pregestimil trial: Complete refusal to nurse (teething and thrush), unable to express enough for demand, on Pregestimil only by 7mo.
- Projectile vomiting and diarrhea almost daily with Pregestimil.
- Began coughing, gagging, choking and vomiting multiple times per day
- Not gaining, sliding down growth chart
-Able to tolerate sweet potatoes, french fries, green beans, peas, carrots, no fruits

10 months to present:
- Rotavirus 1 day after turning 10mo old, hospitalized for 6 days, fell under 12lbs
- Introduced Neocate just before leaving hospital, very well tolerated
- Began gaining and growing appropriately on Neocate only
- At 11 months began projectile vomiting, diarrhea, choking, bloating cycle again. Noticed that Neocate had changed to a new label, made calls to find that the formula changed. Tried to slowly introduce, untolerated.
- Grows well, symptom free with old version Neocate only

Formula failures:
- Neocate 1+, 5 days, coughing, gagging, vomiting/diarrhea/bloating (v/d/b), rash
- Elecare- unable to get to more than 2 parts Elecare to 3 parts Neocate, severe rash, v/d/b
- Neocate Jr-longest trial 2+ weeks (June 06), also no more than 2 parts to 3 parts, nighttime vomiting only, diarrhea, worst rash, mucous in stool, dark blood in stool on last day of trial. During this trial, soaking diapers—would wake up in middle of the night soaking, soaking again by next morning
- Within 4 days of removing JR, rash almost completely gone, no blood, no diarrhea—all symptoms stopped.

Curently:
- Now reacting to fries in peanut or soy bean oil, sweet potatoes, refusing other baby foods. Soaking diapers after exposure to fries, etc. Exposure to 1 Dorito chip and 2 Goldfish crackers (separate occasions) led to bloating, diarrhea, return of rash.

Allergies:
Medicine: no known allergies, both siblings allergic to penicillin
Food: Corn, skin testing

The last several days have been very good with Emily. She is strictly back on Neocate infant, and her tummy issues are so much better. She didn't catch much of a break though--poor thing is cutting 7 teeth right now--four of them molars!

Tuesday we meet with the new GI at a local university medical center. I'm hoping that they will be able to develop a plan and coordinate it. I'm bringing a detailed list of events/symptoms starting from my pregnancy to Emily's current issues. I made this appointment before we met the other GI, but since he could see us much sooner than this office, we went to him. I am thankful that I never cancelled this one. I have had NO luck getting through to the nurse or dr at the 1st office when I need them. The last time Emily had a bloody diaper, I called to see if she could be seen sooner, and instead of getting me in touch with the dr or nurse, the receptionist put me through to the appointment line. He may be a fantastic GI dr, but if I cannot get through to him when I need him, then what's the point?

Got the official brush-off from the allergist

The allergist appointment was very discouraging and a huge waste of time. At the onset, he made it clear this was just, "How ya doing?" type of appointment, not a "Hey, we have a problem" type of appointment. I was describing Emily's reactions to JR and to the soy bean oil, and he basically cut me off. He then actually told me, "Sounds like we need to refer her to GI." HE REFERRED US LAST TIME! In fact, he referred us to our current GI who is a good friend of his so they could handle Emily's case TOGETHER!!!

I feel like I'm taking crazy pills or something!

So, Em's symptoms may still be an "allergy" but apparently this is not the type of "allergy" this ALLERGIST handles.

So, I called the GI office to see if they could see her sooner than 2 weeks from now due to the bloody stools, etc. I spoke with the front office, gave them the update, and instead of passing it on to the nurse or dr, she connected me with the appointment person. That person said, "No, we can't see her any sooner."

Shortly after my last post, Emily woke up from her nap. I changed her, and there was more blood in her diaper. We gave her about 5 french fries yesterday, and that may have been the culprit. I called the restaurant to find out what type of oil they use--soy bean oil. I'm glad now that we waited on the soy milk challenge.

Our appointment with the allergist is tomorrow afternoon. I'm going to tell him all that has been going on with Emily since he saw her a month ago. (Has it really been that long???)

I see Emily's future in this picture--a cell phone in one hand, waving goodbye to Mom with the other hand! She is a BUSY girl! Thank goodness she is feeling better!

Big Improvement!

Emily has gotten a little bit better everyday since we stopped the JR trial. Her rash is almost completely gone, and she is overall much happier. Yesterday, she had her first "normal" BM in a long time. We are going to see her allergist on Wednesday, so we will see where to go from here.

As always when she fails a new food trial, I am reminded that the old Neocate will not be available much longer. We really must figure something out soon!

We're stopping the JR trial

Emily has had a rough few days. After church on Sunday, we noticed that she looked chubbier. By that night, she was pretty puffy. Her poor tummy was very big and tight. I think either she was given some food in the church nursery, or she scavenged something here. I did not see her get into anything at home. Since then, the diaper rash continues to be bad, and she is still having diarrhea. She is also still vomiting (but thankfully not much), coughing and gagging. The last two nights have been very hard--she's not sleeping well at all. It has been over 2 weeks since we started JR, so I'm stopping it to see if she improves.