Her Advocate 

Being a parent is the hardest job we will ever have, when your child is sick, that already hard job just becomes almost unbearable. I know I can’t think about anything but my child when she is under the weather. Instead of just handing her food, I watch her eat. Instead of just kissing her goodnight, I watch her sleep. I am sure I am not alone here.

So, in February of 2016 when my vibrant, active, outgoing 14 year old appeared to be pale, seemed to be complaining about aches and pains that she never had before and she was withdrawing from all the things she loved, I knew that something was just not right.

I am sharing this story because we are our children’s advocates. Nobody will know our children better than we will, so what do you do when you have gone to countless doctors and being told that “it’ll pass” and see it only getting worse. Hopefully, you will never have to experience this overwhelming feeling but I want to let you know, when you know there is something more that they doctors are missing, YOU, as the advocate for your child, have every right to push and demand more from the professionals that we trust to have the answers.

Here is our story.

My daughter was injured playing basketball in February, 2016. When she was looked at by a Top NJ Sports Orthopedist, we were assured a healthy kid like her would bounce back fast. She was put in a “air boot” for six weeks and on crutches. She was certainly not excited about missing her winter sports, but the fact that she is and has always been an athlete was a great motivation to stick with doctors orders.

It was quite surprising to hear, when she went for her 6 week follow up, that her foot wasn’t healing at the rate in which he expected. There was still significant swelling, bruising and it wasn’t able to withstand any pressure. We were all disappointed to find out that she’d need to be in another boot, this one a tight lace up,and she would need 4-8 weeks of physical therapy 3 times a week.

Along with the foot injury, I noticed a slight change in her appearance. She had lost a lot of muscle tone and looked  physically drained. Noticing these minor changes in her, we decided to get her cleared for upper body strengthening and light stationary activities.

At this time, I left for 10 days on a retreat in Indonesia, there I had very limited access to phone and Internet. I was sure that this light movement was what she needed and felt comfort leaving her with her dad, I knew she was in good hands.

When I reached Hong Kong on my way home, my husband told me that she was under the weather and missed school the past 2 days. Her main complaint was nausea and stomach ache. I was concerned, but we were able to FaceTime and I was sure it was just a case of “mommyitis” and since I was going to be a phone call away and home in 2 days, I was sure she would be OK.

On March 10th, I returned home and my husband expressed that she might need to see a doctor so I didn’t hesitate to get her in to her pediatrician the next day. I notice when I saw her that she looked significantly thinner, very pale and had dark circles under her eyes.

She was in to see the pediatrician on March 11, 2016. We were told that she probably had a very common virus going around and there was nothing to do besides eat a bland diet, hydrate with water and rest. I kept her home from school for another day and watched her closely. She began to complain of trouble swallowing, loss of appetite and extreme exhaustion. I continued to check her temperature, but it was never higher than 99 degrees.

I was exhausted from jetlag, a 13 hour time difference and daylight savings, so I figured that I was probably just overreacting because of my own exhaustion. But, she tossed and turned all night and refused to eat. I began to worry about dehydration, on the 13th, after an entire day of her being unable to get out  of bed, my husband and I agreed that we had to bring her to the emergency room to be checked out again. We are both very conservative  when it comes to medicating our child and thankfully she has been the picture of health up until a few weeks earlier, so we were both struggling with watching her like this, as any other parent would.

After a quick physical exam in the ER, aside from having extremely high blood pressure and her heart racing so fast that they put a monitor on her, he doctor said he could give her something to help ease her nausea but he was sure it was gastritis as diagnosed by her pediatrician earlier that week. He said give it a few ore days. We were assured that it would pass.

We left the hospital feeling very defeated, I had nursed my daughter through quite a few “stomach bugs” and this was nothing like I had seen before. I was sure they were missing something but, again I just resigned it to my nerves.

As a few days passed, we were being told be everyone who saw her that she looked really bad, we noticed it ourselves but we assured them she had been diagnosed by the 2 doctors with a bug. Their concern was met with much frustration by my husband and I, because we were doing everything we were told to do and it was just getting worse.

I made a follow up appointment with her pediatrician for the 15th, and was sent away with advice about her diet and some over the counter suggestions such as a daily Prilosec and patience, yet again. In my entire career as a mother, this was the worst I’ve ever felt. I knew that I was seeing something that the professionals just weren’t seeing.

We made one more visit to the emergency room on 3/20 only to be told she was perfectly fine. That was my breaking point, I demanded they run a full panel of bloodwork and explained that I knew my child more than any professional and I was 100% sure there was something going on that wasn’t as simple as a bug or virus. They agreed to do it and in an hour after the blood was tested and a urinalysis, they said she was probably having some sort of stress either in school or home and there was nothing physically wrong with her.

We took our child and left, again, without answers. She had been sick for three weeks and not a single person could tell us anything. I decided on my own to call a Pediatric Gastrointestinal Doctor and make an appointment for her, and to add insult to injury, not a single doctor within 25 miles had an available appointment until mid-April. I cried.

I should tell you by the point, my daughter had lost 8 pounds in 3 weeks, she a greyish color to her once very golden tan skin. We noticed she was shedding hair all over the house, pillowcases and drains. She constantly rubbed her legs and complained of sharp pains in her legs and joints. My daughter was now shut off from all friends and hadn’t been to school in weeks. She said her head was “foggy” and she was nervous now that she was going to be sick forever.

In a last ditch attempt, I called my family GI doctor who had treated both my husband and I before for minor stomach issues. I called and spoke with the receptionist and then a nurse. I explained that we had been turned away everywhere and we just needed someone to really look into this because it we were at a complete loss. I received a call from the doctor who said, he could not treat her if he found something but he would take her in and examine her and run his own blood panels, as a favor to us since we had a history and as a parent, he felt our pain. We were in his office the very next day.

He was very through, he looked at her and agreed that she didn’t look or sound like she was “faking it” or just “stressed”. Just listening to her stomach, he could hear her gut was in turmoil. He said her eyes didn’t respond the way they should. He muscles were not firm. He felt like he was onto something but, gave me a script to get her blood work and included several tests such as vitamin panels and celiac disease testing.

The next morning she was at the Lab getting her blood drawn and it was a waiting game. The weekend passed and I hadn’t heard anything. She was the same, it was Easter and she was certainly not in the mood to celebrate or eat.

Monday night I received a phone call from the doctor who said her blood work came back and he is confident he found the culprit of what made her so ill.

Clinical Vitamin D3 deficiency

I was so confused because this was never even mentioned by the 4 other doctors she had seen, plus could a Vitamin deficiency cause such a drastic change in health? He explained that healthy vitamin d ranges are between 30-100, somewhere in the middle is where we should all fall. In the winter, most people are on the lower end of the spectrum and even below the “30” marker, which could easily be helped with a over the counter vitamin D3 in about 3000IU, he said that in children vitamin D is so important the if it is anywhere under “12” it is considered a CLINICAL deficiency. He said to make an appointment to see the pediatrician immediately so she can be monitored and given prescription strength doses.

I followed his order, still unaware of the severity of this. I received a phone call from the nurse at his office the next day to follow up before the appointment. She explained that she would be ending a copy of the blood work to our pediatrician along with a recommendation for how to treat it, but since she was not an adult, he figured it would be best left to the pediatrician.

That evening we went to the doctor, finally relieved that we had some answers. T was able to obtain a copy of the lab report and her vitamin D level was a 9, which made it well below the clinical level and would explain a lot. As we waited, I finally, for the first time in almost 4 weeks, had some relief. I knew what was making my child sick and we had a course of therapy to treat her.

However, when the pediatrician walked in she asked what we were doing back, pretty much mocking me for bringing her in to be treated for a vitamin deficiency. She said, “just give the kid a vitamin”, in a voice that sounded like – you don’t need me to tell you that MOM! I was furious, I wanted to know why she wasn’t going to follow the GI’s recommendation and she thought nothing of saying “because I know nothing about treating this, I have never had a patient need a prescription for vitamins”. So, I told her that it was unacceptable, I had been there 4 times and I wanted her to figure it out, and FAST!

She left the room and began to pull out books and research while we waited. I then saw her on the computer and heard her on the phone with a colleague. She came back into the room and apologized, she said that she would need a day to figure out how to treat a child for this and she realized now that it was actually very serious. I don’t know who was on the other end of that phone but I was grateful!

We went home and were promised an answer the next day.

When I got the phone call from the doctor, she apologized again, profusely. She said that she was happy that I didn’t just drop the ball on this and every parent is our child’s advocate, and even said she would want me to be her advocate. After her research, consulting and reading, she is 100% in agreement that this is what caused all of her symptoms.

She has been prescribed 50,000 IU Vitamin D3 to be taken orally 1x per week, of course a healthy, organic, natural diet. At least 10 minutes a day in direct sunlight, up to me with or without sunscreen. (apparently this is a big debate)

Parents, I decided to journal this for you so you are aware that this can happen to any of our children. Vitamin levels are not checked on a standard blood test, you need to have this checked with a special blood test.

A few things factored in – making this the perfect storm for her body. Some scientific evidence suggests that many of the ailments that plague Caribbean people are brought on by low vitamin D levels. Due to her pigmentation and melanin, she doesn’t absorb the sunlight as well as someone with fair skin. She had been unable to do much due to her foot injury, with that and a long winter, she was just not out in the sun as often as usual. Her father also has low Vitamin D levels so she is genetically predisposed to this ailment.

What you need to know is that Vitamin D in children presents itself much different than adults and it is MUCH more critical that they get treatment. Many times children and misdiagnosed because a vitamin panels aren’t even checked! I urge you to be diligent with this so you don’t find out when your child is a month into suffering.

Symptoms vary but the symptoms my child displayed were:

  • nausea
  • lack of appetite
  • sharp pains in muscles
  • pale skin
  • unable to control body temperature
  •  heart racing
  • cloudy head and absentmindedness
  • withdrawn from activities
  • insomnia
  • cramping
  • dizziness
  • problems with swallowing and digestion
  • flulike symptoms with no fever
  • weakness
  • exhaustion
  • dark circles under eyes

I can honestly say, since we began giving her the OTC Vitamin while the doctor researched the proper dosage, we have already noticed a difference in her. She has been on VitaD 5000IU Daily for over a week and has already returned to school, began physical therapy on her foot and even spent some time with friends.

I know we are not out of the woods yet, she has had some good days and some bad days but overall, I am happy we have a diagnosis and we are working on getting her better. It was a month of doctors and hospitals. I am so grateful for Dr. Dasani who diagnosed her and believed me when I said this was NOT my child just overreacting.

I will keep everyone posted with the news of her treatment.

 

 

 

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