Tag Archive | the power of healing

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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Our Healing Journey

IMG_0185I’m not sure when the falls got suddenly worse but his balance had always been a bit off. Some-time in October of this year though, we had a birthday party for a friend’s son’s 5th birthday and that’s when I decided enough was enough. I knew Jaxson had been falling a lot recently but watching his legs suddenly give when he was trying to complete any physical game activity while at the party, finally set my panic button off. I could not wait another 3 weeks for his orthopedic appointment I had made earlier in the week.

I had already gotten a teacher’s note the previous week, stating that during a scavenger hunt game with Jaxson she noticed he fell at least 5 times for no apparent reason. Also that same week he had fallen on his face off the bus as he was being dropped off at the after school program. As his mother I’m sure you can imagine the pain and frustration this was all causing me but again, my panic button had not fully gone off until the day of the birthday party. I excused myself early from the party; we had literally been there about a half hour.   I got us in the car and called my mother. I told her that I was taking him to the hospital.

Mind you, Jaxson was not complaining of his falls but when I would ask him what was happening he would respond that his legs were acting funny and they would just fall on their own, almost as if they had a mind of their own; something that he obviously could not control he felt.

We got to the hospital’s emergency section and were attended to fairly quickly. I must admit I was a little apprehensive of the first doctor that came in to examine him as she looked very young and as non-judgmental as we all try to be, it’s hard to assume that such a young doctor could have a lot of experience. However, I may have underestimated her expertise as it seemed she was finally helping us uncover whatever underlying issue this may be. She asked some questions, did some of the preliminary physical type testing most doctors do, and came back with another doctor for a second opinion. This time the doctor was older (I know, I know this shouldn’t matter) but at that moment that made me feel better. He repeated some of her testing (looking through Jaxson’s eyes with a light, etc.). Then he had Jaxson do some regular walking,  running, walking on a straight line, jumping and so on to assess his balance.

They left for a while and the initial doctor came back with some information and instructions. She told me this was not a diagnosis but that they didn’t believe the issue was an orthopedic issue but rather a form of ataxia and that we needed to see a pediatric neurologist as soon as possible to get to the root of all this.

It was a Sunday when I took Jax to the ER and the following day, I called the neurologist’s office as instructed and made Jaxson an appointment for as soon as possible.

I kept him from school for several days as I was afraid to send him and have him keep falling. My mother came down to stay and help as I had to go to work.

The neurologist’s appointment finally came and I felt very good about the neurologist. He gave me the sense of being a top neurologist and at the top of his profession. Anyway, he did some testing on Jaxson, similar to the ones in the ER and asked me many questions about the history of his development.

Toward the end of our visit with the neurologist, he stated that he believed this was a coordination issue and agreed with the ER doctors that perhaps it was a form of ataxia. He indicated that we needed to do an MRI as soon as possible to find out if this was indeed the case.

I scheduled the MRI as soon as I could all the while resisting the urge to Google what this ataxia thing was all about. Gosh! I thought, Jaxson and I have already been through so much. First his hearing loss which I still cling to the fact that it was induced by the gentimicin given at birth. Even if it was not necessarily induced by the gentimicin, it was definitely precipitated by it if there is any “genetic” predisposition going on. I just wanted to crawl into a hole and cry myself to sleep. I probably did now that I think about it. Having children is really hard and I imagine it is even harder as a single mother. Regardless though, I’m not going to sit here and feel sorry for myself and as a good friend told me during those days, “just do the MRI and find out what the issue is so that you can resolve it” and I intend to do just that.

We scheduled the MRI and in the midst of all this, the orthopedic appointment I had made prior to bringing him to the ER came up; and even though the ER doctors and neurologist did not believe there was anything wrong in that regard, I still felt he should see the orthopedist. His father and my mother took him to that appointment. As it turned out this orthopedic which was referred by his pediatrician is not even a pediatric orthopedic but rather just a regular one or an adult orthopedic for that matter. However, he still did examine Jaxson and even ordered X-ray’s right on the spot. His notes indicated that Jaxson had one leg slightly longer than the other with possible right hip dysplasia and possible slight scoliosis and we should consider possible mild cerebral palsy. Jesus Christ! To top it off he stated that he was not a pediatric orthopedic and that we should take him to one for a proper evaluation. I proceeded to make an appointment with the pediatric orthopedic and made it to coincide with the day of the MRI results appointment with the neurologist.

On the day of the MRI, I had the bright idea of asking (since Jaxson was already going to be put down for this MRI) if they could also do an MRI of his hips as he was going to be seeing a pediatric orthopedic soon and the orthopedist may ask for this. This inquiry set off a whole range of opinions and events. They told me “Well, you can’t really ask for this on the spot; the technician can only go by what is on the ordering doctor’s script; the insurance needs to authorize this before-hand and they don’t do this on a same day basis; well what if the orthopedic wants an MRI of his knees instead,” etc. As calm as I could, I said “ok, I’m calling the neurologist now to add the hips to the script immediately and to have his people call my insurance to get this authorization; I’m not having my child be put under twice if we can do this in one shot.” It got done, I was able to coordinate the brain and hip MRI for the same day and the test took about an hour and a half to complete.

I had forgotten about the word ataxia or at least tried my hardest not to focus on it and just pray that this was nothing or at least something really simple or at least something related to the vestibular system which is what the gentimicin affects which is part of the inner ear/cochlea. The vestibular system also controls balance. Jaxson’s vestibular apparatus still has not been assessed for proper functioning which is one of our next steps.

The night before getting the results of the MRI, I opened my periodforgood monthly box and unbeknownst to me, the charity I’ve donated to for the month through my monthly subscription has to do with a brother and sister with a form of ataxia. I hope for the best for them and send them lots of love and light. I found this alarming though and it did send me into a Google frenzy when I read about their story on the periodforgood card.

Well, the next morning we go for the MRI results and as it turns out the MRI was not good and does indicate this possible dilemma of the Ataxia or it could even be something as “simple” (for lack of a better word) as a vitamin E deficiency. The next step is to go for genetic testing. But what I found most interesting during the appointment with the neurologist that day, was that Jaxson did two things he had never done. Aside from him being overly rambunctious and energetic, at one point while the doctor was telling us the results, he took his two little index fingers and covered my ears; he put his fingers deep in my ears in order that I would not listen to what the doctor was saying. He then proceeded by taking off his hearing aids and telling me “see mommy, I don’t need this, I can hear.” My little Ganesh! He is so smart, perceptive and intuitive. I just love him. Also, we met with the pediatric orthopedic who evaluated him later that same day; looked at his hip MRI and informed us that Jaxson was a healthy boy; bones are great, hips are perfect, and spine is aligned.

Thank you all for your love and support and for sending positive thoughts our way as we uncover all the steps in our healing journey.

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Much Love,

Belmax