This is super exciting news as we finally got an answer to what the problem is and can now really get Jaxson on the right track! We went to the neurotologist (not to be confused with neurologist) this past Monday for the glycerin dehydration test I mentioned in my previous post, in order to determine if Jaxson’s balance issue is due to an imbalance of fluid in the inner ear. Indeed, this is the issue with his balance and seems to have been all along. The testing was 3 hours long and consisted of a few preliminary balance/coordination examinations, however, the main assessment of his balance that was used throughout the 3 hours at different times, entailed having Jaxson place his feet together while standing and closing his eyes. Jaxson immediately wobbles and falls to one side or the other while doing this normally.
After the preliminary assessment, Jaxson was then given the glycerin solution which is essentially just sugar, a really sweet drink. Jaxson was disgusted by it and I almost had to force him to take it. The glycerin kicks in and his balance is retested in the same manner. Wow! Significant improvement in balance this time around (about an hour post ingestion). However we wait another 45 minutes before his balance is retested for a third time while the glycerin is still active, and voila! I’m going to have to call the results a miracle! Jaxson, in the midst of crying hysterically because he was so thirsty (you can tell by the picture how miserable he was during the testing) was able to stay fully balanced with his eyes closed for almost a minute I would say. We would have kept him in that position longer but his pleading for water got so annoying; all I remember was the doctor and nurse looked at each other with a smile. They smiled because they had figured out and could now confirm that the issue is an imbalance of the inner ear fluid. In medical terms this condition is called endolymphatic hydrops. Basically we don’t know the cause as it seems 50% of the cases are caused by trauma to the inner ear and the other 50% (which involves Ménière’s disease if I’m not mistaken) is sporadic (pretty much meaning, there is no known cause). Nevertheless, I’ll take a wild guess and point to my friend Gentamicin as the main culprit once again.
Again, all blood work we have done has come back negative/normal which is great but if my memory serves me correctly I remember the nurse from one of the many specialists’ offices we took him to mention that the electrolytes were a little low but most likely because he had not had any water or food before the blood work which makes sense, however, reading about endolymphatic hydrops just last night, I’m thinking I’m going to have to look into this a little further.
Perhaps the hydrops have nothing to do with the Gentamicin damage although we know the hearing loss was definitely a secondary effect of same specially considering the fact that Jaxson passed his newborn hearing screen before he left the hospital as a newborn, needless to say the neurotologist concurred and even wrote in his notes that the Gentamicin most probably caused the hearing loss.
Now, as for the hydrops, and back to the point I was trying to make above regarding the possible slight imbalance in the electrolytes (I will call the doctor’s office to find out the exact results regarding the electrolytes. I know it was something very slight as she only briefly mentioned it in passing and automatically attributed it to him having fasted for the blood work, but now I’m curious and need all the facts so I will call them today to get all the details and will inform them of the results from the neurotologist’s testing).
More importantly, what I’m going to do is compile all the different tests and information I’ve gathered since we have an appointment with a well-known integrative, holistic medicine doctor in the area in February. I’m thinking with the indicated solution the neurotologist recommended which is to give Jaxson a diuretic called Lasix to restore his balance, and with the proper diet to restore electrolytes, etc that may be low in his body, through the help of the holistic Doctor and her in-house nutritionist, we got this! Jaxson may become superman out of all of this.
I’m just so grateful there is a solution to the imbalance. Thank you so much GOD/UNIVERSE!
I will update you all on how he does as soon as he begins his Lasix treatment and anything additional. Jaxson is also currently receiving physical therapy outside of school and will begin occupational therapy as well to fully catch him up and strengthen his balance and coordination which I suspect will significantly improve with the lasix alone which may in turn shorten the terms of the therapies in general.
Thank you for reading!