Overall S has been doing very well. We’ve made some changes recently that seem to be helping.
Asthma – S still needs occasional breathing treatments when she gets the slightest hint of a cough. Usually nighttime is the worst for her, so for a while we were giving nebulizer treatments before bed and that seemed to reduce the nighttime coughing fits. The move from a carpeted room to one with hardwood floors was a great one for her. She used to wake up multiple times coughing at night in the carpeted room and that has been reduced to once or twice a night. We are all sleeping better as a result.
Reflux – This problem is pretty bad right now. For a while after eating or drinking S would burp incessantly. Honestly for a while I thought she was mimicking M (Sorry Honey). But then it occurred to me (rather slowly I might add) that her coughing fits were at the same time every time. So either she has the most regular sleep cycle ever, OR the reflux was back. Her pediatrician put her back on Zantac for a while and we will be having a follow up with the gastroenterologist to see what our options are. Thankfully S seems to be going much better medicated. Hard to tell if her coughing fits are better because of the move to the new room, or both…but either way the constant burping has stopped. Her reflux must have been bothering her because after being on meds for a few weeks we missed a dose and she actually spit up – something she hasn’t done in months!! Poor girl. Her pulmonologist thinks that she possibly has airway/lung damage from all of the reflux and wants to do a bronchoscopy at some point. Problem is, no one is willing to put her under general anesthesia to explore this further. Fine by me (for now).
Neuro Issues: The results of all of the testing that we had done this summer were inconclusive. She is not having seizures and the MRI showed no tumors or lesions on her brain. Our neurologist said that she has additional fluid on her brain in the lower back portion but that it wasn’t causing any issues. Essentially the benign hydrocephalus that she had as a baby never fully resolved itself but did not increase. Her neurosurgeon said he didn’t see anything –but I didn’t argue with either one of them. I have learned to take each doc’s opinion as a piece of the puzzle, even if they don’t fit. I’ve also realized that medicine (especially with mysterious medical issues) is mostly just a guessing game. Frustrating but true.
Genetic Testing: S’s neurologist sent out her blood for genetic testing in July and we have yet to receive results. There is a company called 23andme.com that sells kits to do genetic testing and then is compiling information into a large database. I am curious to see if S’s results can be entered into this database to try to identify predispositions or patterns. Since we don’t have that much information about her birthparents, getting an overall picture would be fantastic.
I had hoped by the time that I would write this update that we would have some clear cut answers, but we don’t.
What we do know:
- S has elevated lymphocytes and a large quantity of abnormal lymphocytes.
- Her other liver enzymes have returned to normal. However, her alkaline phosphatase levels have been elevated for more than six months.
- She continues to be bothered by asthma and allergies. If I do not dust her room multiple times a week, her sleeping is severely affected.
- Her energy has greatly improved since the last time she was in preschool. This is in part to better sleep at night, overall increase in health, and the fact that if she is showing signs of fatigue, I keep her home and let her sleep (one of the benefits of working from home).
I would be lying if I said I wasn’t concerned about the Flu this year –especially since so many of my friends (not local yet) have the flu (H1N1 or Infl. A). We’re all getting our flu shots this year (not the H1N1 shot though). I’m meeting with her pediatrician next week to come up with a plan of action should S get the flu. Last year’s flu shot did not prevent her from getting the flu and that was what sparked a 5 month decline in health. We are hoping for better luck this season, but are realists. She is in preschool fulltime – surrounded by other snotty kids. It’s spreading quickly. If we do end up with the flu – I am pretty certain that we will have a good plan in place.
We are also meeting with her pulmonogist and pediatrican to discuss some preventative things we can either do or take with us on our trip to Germany in December. I’m not sure if they’ll give us Tamiflu to carry with us, but in a case like S’s – it would be better to have that on hand. We also travel with antibiotics for ear infections, UTI’s and respiratory issues. We also bought travel insurance for this trip just to be safe. You just never know.
So that’s where we stand.
We’re still a bit on uncertain ground, but things have settled down enough to catch our breath. We haven’t been to the pediatrician in three weeks now and just had our first trip to the ER in 4 months a few days ago (nothing to worry about, just blood work.) With any luck, I won’t have to write another health update for a while.
Positive thinking, right?
