Tag Archive | neurotologist

Our Healing Journey-Hooray for a solution to the problem!

Jaxson Blue

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.

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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!

Much Love,

Belmax Saki

Our Healing Journey: Appointments

Today (11.17.14) we had 3 different appointments. The pediatric orthopedic that we saw last week recommended we see a physiatrist and go for a physical therapy evaluation to see what Jaxson’s needs may be from a physical therapist standpoint. So, our first appointment today was with a physical therapist named Alexandra at Mountainside Children’s Hospital. We are also trying to schedule an appointment with a physiatrist as soon as possible but that takes a little longer as they are booked from what I was told; however, physiatrists  work closely with physical therapists and from meeting Ali today I feel that we are in pretty good hands in that regard.

Ali asked me a bunch of questions and ran several tests on Jaxson, particularly, she tested his vestibular system functioning which I greatly appreciated as I’ve been trying to tell all these specialists (the gazillion ones I feel we’ve already been to) that the problem is coming from his vestibular, inner-ear systems as having been damaged by the gentimicin. They mainly ignore me. What do I know? I’m just a worried mom who has lived with my child from birth and saw the massive unnecessary medical intervention he underwent because I developed a slight maternal fever during labor. Crazy newborn intervention needs to stop.

Crazy interventions during labor in general need to stop as well. The Business of Being Born documentary portrays all that can go wrong when an uninformed mother to be like me at that point in my life, goes into labor. I experienced this first hand. I was strapped to a bed as soon as I got to the hospital and given only ice to eat for almost 20 hours. WTH? I felt great, what was the problem, why was I strapped to a hospital bed from the moment I got there and immediately given pitocin without my knowledge. “Hospital policy” I was told. You can’t walk around because the baby could just fall out. hahahahah!!! Seriously, wouldn’t I have to push?  Anyway, what a nightmare that was. I rather just focus on positive things and not re-live that experience in my mind. Mind you, I was a super healthy 26 year old with a beautiful, perfect pregnancy throughout and just made my way to the hospital because my water broke and excitement told me, “rush to the hospital”. Bad idea, I should have probably stayed home and waited until contractions began at the very least.

They took Jaxson’s temperature rectally about 3 days after he was born as their “routine nurse check up” while doing their rounds (we were scheduled to be in the hospital for 4 days since I ended up with a c-section not surprisingly, although I did request the c-section). Anyway, I specially remember our room being extremely hot on this particular day and I had Jaxson perhaps a little too bundled. The temperature was 100.3 rectally, which is technically not considered a fever by most medical standards, that’s actually right at the cusp, and they should have retested his temperature before hooking him up to an IV again with Gentimicin. The first 3 days he was automatically given gentimicin because of my “slight maternal fever”.  They began running a bunch of test to see if there was an infection. These tests included a spinal tap which his father and I vehemently objected to no avail. Again, all tests results came back within 2-3 days negative but they continued to give my newborn gentimicin for a total of 8 days and wanted to keep him an extra two days on the drug. We refused and had to sign a waiver to release him from the hospital. I often wonder if those extra two days would have made him completely deaf. However, since he passed his newborn hearing screening (as gentimicin can take months to show any side effects) and he met all his milestones on time, Jaxson’s severe hearing loss was not confirmed until he was about 3.5 years old (I began inquiring about his verbal development not being up to par when he was about 2.5 years old, and it took me a year to finally have an audiologist confirm that I was indeed correct, he has hearing loss) and given the fact that he received his hearing aids by the time he was almost 4 years old which is super late, he is verbally almost at age level and continues to improve. I believe my child was born perfectly fine and I hope that all the genetic testing we have to do soon come back clear.

Alright so back to the appointments now that I’ve shared a little newborn medical history. Ali, the physical therapist informed me that his vestibular system was definitely not working to its full potential and that based on the fact that he has sensorineural hearing loss, she already suspected that regarding his balance issues. She explained that he clearly has balance issues but that on top of that, his hamstrings are very tight and so are his heels. He is pronating his feet as he is flat footed, one leg is slightly longer than the other, and he is a little low muscle-toned. Geez! She will have her report ready as soon as possible which will include a recommendation for physical therapy twice a week targeted at strengthening his other senses in order to compensate for the vestibular/inner ear dysfunction which directly affects balance and he needs inserts/orthotics for his feet.

Immediately after this appointment, we headed back down to Princeton and made our way to the chiropractor’s office. He quickly assessed Jaxson, stated that one leg was slightly longer than the other and hence he was not in alignment. He adjusted Jaxson and put his legs back into place. The legs are now symmetrical and I actually did see the difference which made me feel a lot better.

After the chiropractor, we drove down to Jaxson’s school where I had a meeting with his teachers, the school director, case manager from our school district (Jaxson attends a private auditory/oral pre-school for the deaf and hard of hearing- he will transition into the regular school system next Fall), physical therapist and occupational therapists. He has physical and occupational therapy in school once a week for 30 minutes.

I was very grateful for the school meeting. I had sent them a copy of the MRI and expressed all my concerns at the moment although we still do not have a diagnosis. We do not know what the underlying issue may be and a meeting was put in place by the school immediately in order to discuss things with me.  Well, Jaxson’s private school had their radiologist look at the MRI and it is my understanding that the MRI looked normal to him Thank God. The enhancements to some of the cranial nerves may have been there since birth and not necessarily indicative of any disease, especially if there is no basis to compare the MRI to, there is no previous MRI. Then the school’s director asked if his EARS have been check for an inner ear, fluid infection. We already know Jaxson has had a history of fluid in his ears and repeated infections. Ear infections that cause no fever and therefore it’s hard for me to know. I was so worried that my first step was the ER instead of the ENT. Anyway, this gave me a sense of relief and I’m hoping this is the case and not something more serious. If I remember correctly, the Princeton school system also had their own specialist look at the MRI with a similar opinion.

The school director got on the phone immediately with the school audiologist to get her recommendations for my next step in this puzzle. In the meantime, I scheduled an ENT appointment immediately. The school audiologist called me and suggested that Jaxson be seen by a neurotologist to address everything that may be causing the imbalance. I must say though, Jaxson’s balance has stabilized for the most part with a few falls here and there, mainly when he is running fast. However, when the falls were worse, he did have a cold and was pretty congested which could really make sense regarding the fluid in the ears. Aside from making the neurotologist appointment, the audiologist suggested that it could be labyrinthitis and that I need to rule all these things out. I looked up labyrinthitis and that seems very possible as Jaxson has recently complained of nausea, specially while riding in the car. His teachers also expressed that his balance is usually a bit worse when he wakes up from nap and then stabilizes. Could it be because while he is sleeping the fluid builds up more to one side? I also think it has to do with his hamstrings being tight and having to warm up as he wakes up and walks around. Maybe a combination of both?

Thank you for your positive thoughts and support while we figure this all out for the best possible outcome.

Much Love,

Belmax

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