Amelia's Neurology Appointment

I am in continued awe of parents with chronically ill or special needs children. I honestly don't know how they do it. I don't know how they handle the sleepless nights, or how they pay the medical bills, or how they justify the extra attention that has to be paid to their typically adjusted siblings. How? What? Where is this extra source of energy? Gumption? Is that even a word? But you understand, they just seem to have more of something special. Maybe it is the child itself. Maybe the bond between a parent and a more needy child is more special than the bond of a typically developed/healthy child. If it's all the same to you, I'd rather not find out. I'm sure those parents didn't want to either. They just are.

I'm certainly not saying I'm there yet or will be. I just know I don't want to be one of them. Today was only the first appointment and I know very little more tonight than what I knew this morning. Which is what I expected. After answering a few questions regarding family history and daily living habits, including the sperm donor who has never even laid eyes on her, the physician briefly examined her. She commented on her low muscle tone, how she was such a good baby and offered little explanation into her developmental delays. With that being said, I was quick to point out that since her 6-month well check-up, Amelia has been lifting her head better, reaching out with her hands a little more and can respond to her sister with her own yelps and squeals. These are all signs that she is progressing, just not at a "normal" rate. That had to be good, right? "Yes", she answered. "If it were a neurologically progressive disease, we would be seeing more lethargy, not improvements." This sounded reassuring, but since I really knew this part on my own, it wasn't as reassuring to me as it should have been.

We discussed my concern with her seizure like activity. One type of activity is presented shortly after her bottle feeding, but not usually solids, such as cereal, etc. She will arch her back like she did with the reflux, but also lock her head way back (almost touching her back) and stretch out her arms with clenched fists, her eyes will flutter and roll back and she grunts, almost like in pain. This can go on for 5 to 10 minutes or so after feedings. I'm not convinced it isn't simply related to the reflux, but I'll leave that for the doctors to figure out. Another episode she presents seems to be this staring into space, dead weight body, and then her head will drop. This will present itself for about 15 to 20 seconds and then she "comes to", fine as she was before. Then there are times where she is literally writhing around like a snake, or belly dancer, and it appears completely involuntary (as this can also occur in her sleep).

There are other symptoms we have noticed along the way and I should have taken better notes, because somehow I feel like I didn't convey the gravity of my concern to the doctor. I'm sure I did, but there was no "AHA!" moment in her voice, or even the voice of reassurance, only the listing of the battery of tests that "might" have to be performed. But, says the doctor, let's get the standard EEG done tomorrow, and then we may know more. Great. Another trip to Tampa, another day of missed work. I will do anything that I need to, but having a job with no vacation or sick benefits means if I don't work, I don't get paid. Simple as that. However, we will be back there tomorrow afternoon, with a jacket this time, because for a pediatric doctors office, it was INSANELY cold. Who needs to waste that much electricity anyway? But I digress...

So another night of praying, another round of "what if's" and another night thankful that our Lord God has found favor in me by entrusting me with these two beautiful angels! I will update more when we learn more. Please keep Amelia in your prayers for health, Abigail in your prayers for understanding and me in your prayers for strength and wisdom. Thank you!

Pediatric Gastroenterologist

Last Tuesday was our visit to the pediatric GI doctor. She came recommended from our regular pediatrician, sees patients in West Pasco County and is on her insurance, so I made the appointment and off we went, finally hoping to get some answers. Answers that seem to elude us with her regular pediatrician, despite changing from breast milk to 4 different formulas. The office seemed eerie, I guess because it was at a Pediatric Surgery Center, so it seemed a bit drastic of a move to me. GI doctor to SURGERY... hmmm... maybe I'm over thinking this a bit. But in we went. My grandmother came with me, so she could hear from the horse's mouth what the doctor thought. I also felt if she had anything else to add - she could tell it to the Dr., instead of giving it to me when I got home!

Anyway, on the counter inside the exam room was an occult stool sample collection kit with gloves and KY Jelly. Odd, I thought, is this the "PAP smear kit" for kids with belly problems? Yikes! Teaching them young to look out for those tubes of KY! However, we wouldn't be needing that for this visit, thankfully. The exam was thorough and we had an opportunity to ask questions and she explained a lot of things to us. It basically boiled down to this - Amelia is allergic/reactive to the proteins in her formula. No matter where she gets it from: mom, cow's milk or soy, she is going to react to it. She may or may not grow out of this problem, and we may have not seen the worst of it yet (great). She may or may not have a problem in digesting other foods later on, so stay away from foods that contain milk or soy proteins. Ever try that? That is HARD! Her fix for now is a hypoallergenic formula (Allimentum) that is super expensive. Thank goodness for WIC!  If she has problems with Allimentum, her next step is a prescription elemental formula that only has the most basic of proteins in the mix. However, most babies have to be tricked into drinking the stuff because it is nasty (her words, not mine).

She also has reflux, or GERD. This will definitely get worse before it gets better. This disease generally peaks between 4 months and 6 months, then for most babies, tends to slow up and by 2 or so, disappear all together. She is on prevacid for this, because most other acid meds use milk and or soy proteins for binding. See how hard this milk protein thing is? Anyway, the prevacid is going to take 7 to 10 days to work, and meanwhile you can take her off the Zantac because her dose really isn't high enough to do anything for her anyway, I was told.

We were also told that she will continue to spit up mucous, that is normal in GERD babies (Gram still doesn't buy into this one. She says in all her life she has never seen a baby spit up so much mucous and it be normal); she may vomit up to 20 times a day and as long as she still gains weight, it is ok; thicken her bottles with cereal or thickener to the consistency of honey or so to help slow up the vomiting; the prevacid should help control the pain of the acid, but won't really stop the acid altogether. If there is breakthrough pain - treat with regular strength Malox. The adult stuff, I ask? Yep - the adult stuff. We are now dosing 3 times plus daily with the Malox. I'm not so certain that the prevacid is working... And her poops can be any color from normal to greenish/grayish and can be slowed by using rice cereal, and softened by using oatmeal cereal. BTW - only use Beechnut or Earth's Best, because the rest use soy and milk proteins as fillers/binders. Uuuggghhh... this is a long road ahead...

Tummy Problems

My Mom Doesn't Want Your Advice!

I saw this onesie at Target the other day and HAD to have it! Since having my second child with "colic" issues, the advice about how to handle her still keeps coming! Even from complete strangers while standing in line at the grocery store! But I digress... After repeated visits to her pediatrician and Amelia was still spitting up what seemed to me an enormous amount of formula, continued crying bouts from stomach aches and uncontrolled constipation, I decided to do a lot more digging into the reflux issue.  I was convinced that Amelia was allergic, or at least intolerant, to milk. However I thought is was due to the lactose in milk. So I put her on soy formula. Her tummy issues continued, although not as bad, but her urine started smelling so very strong! Almost pure ammonia! She even peed actual urea nitrate crystals that we thought was blood in her urine. Also come to find out, soy proteins are even harder to digest than cow's milk proteins. Soy is also an abrasive for the bladder and ended up being part of our problem for urine smell.

Then Grandma took matters into her own hands and talked with a nutrition guru at a local health food store who convinced her (and sold her) rice milk and coconut water to soothe her gut and get her system cleared out. After a weekend of throwing up a lot of mucous (the health food lady said it was necessary to get "rid of the old") and going through a whole container of rice milk, I made an appointment with a pediatric gastroenterologist and picked up a container of goat's milk. Goat's milk is thought to be (according to well intentioned older ppl.) the best form of gentle milk for babies. I already knew from listening to my doctor that goat's milk does not provide all the necessary proteins, fats, etc. for babies to thrive, but at this point, I'm willing to try anything!

With God's help, we'll make it through to our GI appointment!