So, we have started this blog to let our friends and family know the latest updates on her health issues. We have also created this page to post videos for Leah's doctors to watch and analyze.
We have a lot of them so I will post them in chronhological order, from the most recent to older videos. I'll make sure to add any notes and the dates and times.
Here is a summary of what has been going on:
Leah was admitted to UCLA medical center for abnormal eye and body movements that started about 2 weeks ago, after her first round of vaccines which caused her to have a fever. After that fever she was having a lot of jerking movements and eye movements that they now are calling opsoclonus myoclonus ataxia syndrome, also with pretty extreme back arching.
The first visit the the ER was because of these movements and they did a MRI and a 24 hr EEG which both came back normal. It didn't look like she had any seizures or any obvious neurological issue. They assumed it was bad reflux, possibly something called Sandifer's syndrome, which only affects 1% of babies. They started her on acid reflux medication but it didn't seem to help.
We had to take her to the ER last week because she had a high fever or 102.8, and she was admitted again, this time at UCLA Santa Monica. The fever went down, but the movements were constant, so much so that sometimes she couldn't sleep. Or when she did it was because she was so exhausted from it. They attempted to do a PH probe, a tube that goes down her nose to her stomach to measure the acidity and see if it was indeed acid reflux. She was born with Tracheomalacia, which means her trachea is not rigid, but floppy, so when she breathes it makes a squeaky noise. Because of this, when they did the PH probe, she started to choke and couldn't breathe and started to actually turn blue on us. They pulled it out and she was fine. They tried one more time, but the same thing happened, so they decided not to do it at all. They sent us home on one more acid reflux medication called Reglan, which would help her stomach contents leave her body faster to reduce reflux. They also told us to add rice cereal to her milk to make the liquid thicker and perhaps help it reflux less as well.
The next day we took her to the ER again, because she was vomiting everything she ate, and our doctor did not want her to get dehydrated. She was seen by the same group of neurologists who thought that her symptoms had worsened and changed since the last time they saw her, so the put her on another EEG.
The gastroenterologists came to see her and asked us to take her off the reflux medication because they wanted to try the PH probe again, this time with someone who knows ow to insert them in special cases like hers. They didn't think it was just reflux either, when they saw her, because of the eye movements she had.
So Tuesday they took a lot of blood and urine samples to test for genetic, neurological and infectious diseases. The poor thing looked like a pin chushion, they poked her in about every vein they could use.
The video EEG came back normal again which told us that her movements were not seizures and it eliminated a lot of neurological things it could be, but not everything.
We also got a consult from the Hematology/Oncology department because they think it could be a type of cancer called Neuroblastoma, which is a tumor that could cause developmental delays. Although because she is so young it could be stage 4 neuroblastoma which apparently is treatable and not as scary as when children are older.
On Friday 5/7 she was put under general anesthesia so they could do another MRI, this time with contrast to try and find any genetic or neurological issue. She is also getting a MIBG body scan to see if they can find a tumor, which will be on Tuesday most likely. While she is under they also did another lumbar puncture and get some of her spinal fluid to test for some other diseases as well as for the neuroblastoma.
The results from that MRI came back normal, so her brain looks structurally normal. No lesions, or strokes on any thing that could give an idea as to why this is happening.
They decided to do a CT scan on Monday and the MIBG scan on Tuesday, possibly.
On Saturday 5/8, we think she overfed, which caused her to vomit most of what she had eaten. A few hours later, at around 7 pm, we noticed that she was crying and just being very fussy after I bottle fed her some expressed breast milk. We both tried calming her down, and rocking her because we thought maybe she was just tired. But her breathing got very loud and it started to sounds like she was gasping for air. We called the nurses in and they noticed that she was sweating alot and having issues breathing, so they called the on-call doctor and she came in within a few minutes. He took her shirt off and immediately noticed that she was working way to hard to breathe, since every time she would inhale, her ribs would stick out and she was having a lot of retractions.
They called rapid response and a respiratory therapist came in and tried to help her clear her airway and got an oxygen mask over her. After that things happened very fast, they had close to 20 people in the room, doing what seemed like 100 things at one, trying to help her. They got a PICU doctor to come up and she took control and started getting her on different medications to calm her down and they decided to intubate her so that they could help her breath. We were lucky that the doctor who had come in, knew her very well and was able to let everyone else know what was normal for her and what wasn't. As well as keep us informed of everything that was going on, which was a big relief because we were thinking that we might lose her and he made sure to give us peace of mind by giving us a play by play of all the procedures that were happening. It was all very fast, they had to wait for the ENT to come in because of her tracheomalacia. As soon as he got there he was able to look through a scope as he put her breathing tube in and once it was in, they were keeping her breathing stable with a hand pump, and eventually moved her to the PICU (Pediatric Intensive Care Unit).
As of right now, Leah is still in the PICU and sedated. She is stable now and they have some machines helping her breathe and also have a feeding tube which is helping her get the nutrition she needs.
Because of all the blood they have been taking out, she is now very anemic, and they will most likely have to do a small blood transfusion, so because I am O- blood (universal donor) I will be going first thing in the morning to donate my blood for her.
For now, they don't know if this is related to her initial issue or if it's an isolated event. They are still waiting for dozens of genetic and neurological tests to come back, just to try and find the cause by process of elimination.
I will hopefully have more answers tomorrow after the CT scan
Keep praying for her..
Zev and Frani