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We are beginning to look at alternatives since the changes in diet and general lab tests have all proven unsuccessful for a solution. If you’re just joining me, please check out Loghan’s Story Part 1: The background, Loghan’s Story Part 2: The Symptoms – Explained to catch up!
Some of the first things we tried based off Loghan’s pediatrician recommendations was speech and physical therapy. Speech therapy for a two month old is a feeding evaluation. You go in, with a hangry baby and they watch you nurse (if you are a breastfeeding mama) and/or feed your little with a bottle. As you feed her, in my case both breast and bottle, they analyze her latch, sucking and even count how many times she takes a breath. They also check for a tongue-tie. Their conclusion was that Loghan preferred the boob over a bottle – I mean, makes sense to me!
Rewind! I’m going to squirrel here for a minute so hold tight! Speech therapy came about due to Loghan’s slow weight gain and that she would not drink from a bottle without a 2-3 hour battle. We tried at least eight different bottles and nipple flows and just couldn’t win. When I returned to work, I had to leave on more than one occasion because she refused the bottle. Eventually we did find a bottle she would drink from (MAM – Love them) but it was still a struggle and she still wasn’t gaining weight.
Okay, on to physical therapy. Earlier I talked about Loghan having Plagiocephaly and the diagnosis of Torticollis. This is what led us to the physical therapy referral. Loghan’s first treatment her physical therapist (PT) analyzed her for her range of motion and tightness in her neck. He agreed her neck was tight but her range of motion was really good. We continued, and to this day, continue to go to physical therapy, although now it is for different reasons. Post hernia diagnosis, Loghan’s PT made a comment that she was probably so focused on breathing and staying alive the first 4.5 months of her life that she fell behind developmentally and then with her surgery, it made it harder to catch up because her muscles are still healing and getting stronger.
- I will talk more about Physical Therapy and torticollis in future blog posts.
Speech and Physical therapy were not the only referrals her pediatrician made. We were also referred to our local children’s hospital (the castle) for Loghan to be tested for thyroid and other things she was previously tested for at birth, but may have been missed. After a second opinion from another pediatrician, we reluctantly agreed to have the tests completed. We were reluctant because Loghan already had quite a few tests done (blood draws and physical exams) and nothing was found, not because we did not want to figure out what was wrong. There was also little explanation as to the reasons behind why they wanted these tests completed and at no point was any sort of imaging done. Nonetheless, we arrived to the castle and had the tests completed, but not without some frustrations along the way.
First, the nurse was unprepared for the sweat test she was about to perform. She stated the ONE cart that they had for the test was in use. Not only was I shocked that a hospital this size only has ONE cart, but she also stated she had to TRY to remember how to do everything without it. Not something you want to hear. She had us strip Loghan down to her diaper, hooked her up to the stress test machine and then left the room on more than one occasion for items she forgot. Loghan is crying, of course, and my husband and I are not impressed. We finally finish the stress test and they need to draw blood for the remaining tests. Two nurses come in the room and say they are going to do a finger prick.
Pause. Loghan is small, like tiny, and they want to do a finger prick to fill a vile of blood. By this time, I am very experienced with blood draws (due to all the tests her pediatrician has run on multiple visits) and I ask them to take it from her foot instead. The main nurse makes a comment that she doesn’t have a foot pricker with her and when the other nurse offers to go get one, the nurse “in charge” calls her off. They try for over 5 minutes to get enough blood from her finger as she sits on my husband’s lap. Loghan is crying, yet again, and it is such a disaster that the nurse spills what blood she did have in the vile all over Paul’s work pants. After that, they decide to go get the foot pricker and collect the blood in a minute flat. If you are not frustrated as a parent after that appointment, just wait until later!
On a positive note, all of the results were negative and although that was a relief, we still didn’t have any answers. On we go to the next referral, the gastroenterologist. A gastroenterologist is a doctor that specializes in diseases of the digestive system. Surely if there was something wrong with her little tummy he would be the one to diagnose it. Wrong!
I’m laughing on the inside a little bit as I start this section because of what a joke I think the health system can be at times. Now, don’t get me wrong, I am thankful for all of the doctors and nurses that help make a difference every day, but like any profession there are good and bad. In my case, I think I got the short end of the stick on the bad, BUT I do LOVE a few of them.
It blows my mind sometimes on how ridiculous some of this really is. By the time we visit the gastroenterologist, it is two weeks before we end up admitting Loghan to the hospital and my patience is wearing thin. I explain to the doctor, in remarkable detail, everything we have tried thus far including dietary changes, testing breastmilk, all the other tests, fortifying her milk, and other options that I will discuss in the next post in this series.
The biggest thing I tell him is that I feel gassy bubbles (she’s a gassy baby) up under her ribs. He says nothing. He barely even looks at her. He doesn’t run any tests. He doesn’t do any ultrasounds or x-rays…NOTHING. He gives me a few packs of Duocal, another supplement, to add to Loghan’s bottles and sends us on our way. I can’t even explain to you how upset I am at this point. I hope that explaining these scenarios provided you with insight as to why I was so frustrated and why I tried some of the other things I did. Loghan’s Story Part 4: Mom on a Mission will talk about some of the other non-traditional avenues I tried in in hopes of figuring out what was wrong with Loghan!