super g & aj's cvs Story
Aubrey Jane "Super AJ" was born 8/1/12, early in the morning after a rather uneventful pregnancy. Immediately the hospital staff noticed she was having difficulty breathing, and started intubating her. She was monitored in NICU, and after running some tests- they said she had pneumothorax, pretty much a hole in her lungs. While in NICU, I noticed she was breathing pretty loud and squeaky, and she would retract. The nurses said this was normal for newborns. Then she started some projectile 'spit-ups'- again, I was told this was normal. This being my 3rd child, I knew better.
After we brought her home, she was pretty difficult to feed. She had trouble latching on, and would do a lot of gasping. About 10 minutes into a feed, she would projectile out everything I just gave her. Not a normal spit up (the drs kept saying "it always looks more than what it really is"). She would cry loudly after feeding too. I showed enough concern, and at three weeks, they sent us to have an ultrasound done, to rule out pyloric stenosis (the stomach and small intestine not fully connected). Everything looked good, but she got diagnosed with reflux. At a month, old, she was put on Zantac.
At about two months old, she started getting abscesses in her diaper area, and eczema all over her body. They tested, MRSA negative, so we weren't too worried.
We spent most of her first winter in and out of the doctor's office and emergency room with recurrent croup and bronchiolitis. The nebulizer and rescue epi nebs were added to her regular medications.
At about 6 months old, while eating baby food, she choked a bit- and within hours, she had pneumonia. Her first-time aspirating.
We took her to a new doctor, and within minutes of hearing her breathe, and seeing her history of feeding problems- she was diagnosed with laryngomalacia.
We were sent down to UW Madison- Children's Hospital, where we met a wonderful paediatric ENT, who after doing a scope on her confirmed bronchomalacia-laryngomalacia. The only thing she had going for her, was she was not failure to thrive, as most LM babies are. I believe that is due to my persistence of nursing her. Also, the pneumothorax was probably caused when the medical staff intubated her, over inflating her lungs.
Due to the severity of the LM, Aubrey was scheduled for surgery the end of April 2013. She came out of her supraglottoplasty great, and after 2 days at the hospital, we were waiting to go home and she spiked a fever and turned lethargic with laboured breathing within a matter of an hour. We were back in the hospital with another respiratory infection for 3 days. She was also put on Flovent, 2x/day, which seems to have made a great difference.
In November of 2013, she started spiking a high fever, and was once again very lethargic. We rushed her to the emergency room, and after x-rays, CTs and bloodwork- they found that a small abscess on her hip, had caused her to start going septic. She had surgery, and then after a couple of days on IV antibiotics, she was sent home with a 1.5" open wound on her side, that we had to pack 2x a day for 2 weeks.
She had another surgery in July 2014, to put in ear tubes and take out her adenoids. As she was having multiple ear infections and was diagnosed with mild sleep apnea.
In December 2014, she started vomiting episodes and by February was diagnosed with Cyclic Vomiting Syndrome after barium swallow studies, 24hr ph probe, endoscopy and biopsies.
In November 2015, she had her tonsils out and a new set of tubes put in.
2016, brought a lot of testing to figure out what autoimmune disorder she has that would be causing constant staph infections and hives. She remains undiagnosed. In November, she had her 2nd sleep study and was also diagnosed with asthma- both exercise and allergy induced.
She is currently under the care of an ENT, sleep specialist, infectious disease control md, immunologist, dermatologist, allergist, and GI/neuro. She also receives speech therapy 2x a week at school. She is currently being tested for sensory processing disorder.
We are on a 2 week on, 4 week off regimen of antibiotics, in addition to her daily topical steroids, zyrtec, albuterol, flovent, cyproheptadine and hydroxyzine.
Now Grant "Super G"- (3/9/08) had a couple of medical issues when he was younger that we got through pretty well - the only thing I remember being an issue was that his soft spot closed up at 6 months and that head circumference was unusually small. We had met with a neurologist-and after a MRI and EEG, he assured us, Grant was fine.
Fast forward to the fall of 2012, the same time I was having problems with Aubrey feeding. We woke up, and had the kids get ready for church, while I tried to feed Aubrey. Grant came in by me, and told me he wasn't feeling the best, and he went into the bathroom. I went in to check on him, and there was my little 4-year-old eyes rolled back, head leaned back on the toilet, in a cold sweat- pale with blue lips. I got him to lay down, and he complained his heart was "racing around like his hot wheels". Within an hour of rest, he was back to normal. The paediatric Dr wanted him to see a cardiologist immediately that week. He was fitted for a 30 day holter monitor and had multiple labs ran. He had some arrhythmia, but no episodes in that 30 days. Within the next 2 years of time, he had migraines, passing out, presyncope, racing heart, nausea, and vomiting- most followed by a period where he goes to sleep in a lethargic state for 4-6 hours, then is perfectly fine, like nothing happened. He saw more cardiologists and neurologists- and had EVERY lab done to him under then sun... blood draws, urine, EKGs, EEGs, MRIs, CTs, tilt table, autonomic testing, and a barium swallow study.
Finally, in August 2014, we were referred to a neurologist/gastric team at Children's Milwaukee, who after hearing his history, and seeing the autonomic testing results- diagnosed him with dysautonomia and cyclic vomiting syndrome (CVS). Some of his main triggers seem to be low blood pressure, so he's on a high sodium diet and blood pressure meds to raise it, and keeping his "excitement" level in check. He has a hard time regulating his body temp, and when over-heated, will often get ill.
in 2015, he had a 24hr ph probe, biopsies and an endoscopy which revealed he had gastric inlets. These have since been resolved.
In 2016, he was diagnosed with sensory processing disorder, anxiety and OCD. He receives therapy through his therapist, psychiatrist, and has occupational therapy. I felt the onset of these symptoms was rather sudden (about 2 years ago)- I finally convinced his psychiatrist to order his ASO titer levels checked. They jumped from 300 in June to almost 800 in November. This, along with his symptoms and decline in school performance, let to a diagnosis to PANDAS. We are currently trying to find a specialist in Wisconsin who can help us treat this. In addition, with his continuance of heart issues, he will be wearing a cardiac event monitor for 60 days.
Super G and AJ are loved very much by their parents and big sister and other family and friends. They are both fighters and their best defence is that they have God on their side.
Please join them in spreading laryngomalacia and cvs/dysautonomia and PANDAS awareness!!!!!!
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