Pediatric Neurologist – Liam’s Story

After a long wait, our appointment with the Pediatric Neurologist finally arrived.  I was extremely nervous as I had an idea that she would prescribe Ritalin or Concerta, and I wasn’t too certain I was prepared to give Liam either drug.

She first called me into her room and we had a talk about the issues Liam was having, I told her about the Educational Psychologist’s report (which I had emailed to her way before our appointment, but which she didn’t seem to have on hand).  I explained all the steps we had been taking to give Liam the help he needed.

She then asked me to wait outside so that she could see Liam separately.  After a little time, she let Liam out and asked me to return.  She had noted down some of the issues she had observed, and advised that she thought Ritalin would help.  I asked her about an EEG, as this was a step suggested by the Educational Psychologist, however, she told me that it was not necessary.

She handed me a prescription and told me to return in a month so that she can see how he’s doing on it.  She also told me that if I notice any ‘tics’ forming, I should immediately stop giving him Ritalin and make an appointment to see her sooner.  I paid the R1900.00 new patient consultation fee and off we went.

I realised some time after the appointment that we still didn’t have a diagnosis.  This frustrated me as I was really hoping for some clue as to what Liam had… ADHD, ADD, Asperger’s, Autism, whatever!  Obviously I didn’t want him to have any of those, but clearly there were problems and surely there had to be a diagnosis for it?

With script in hand, I had never struggled with an inner battle as I did that day.  Looking back, I wish I had listened to my gut, however, I filled the script and started Liam on Ritalin on the Saturday so that I could keep an eye on him.

I think that at the time I was desperate to help my child.  I felt guilty driving him from one appointment to the next after school most days.  My heart was aching watching him work so hard every single afternoon after school on homework and exercises.  I felt conflicted as teachers were bringing issues up and I didn’t know what more I could do.  We also had the financial strain of paying for therapies, specialists, assessments and for placement in a new school.  I just thought that maybe Ritalin was the answer we were looking for, so decided to try it.

Initially Liam was on the 4 hour acting Ritalin and we saw a change immediately.  He got his Spongebob Squarepants colouring-in book out and started colouring.  We were amazed!  Our kid, who absolutely hated colouring-in, was now colouring in the lines, using more than one colour on the page and his work was so neat!  All Liam did that whole weekend was colour-in, we were shocked.

On the Monday, he asked us if he could take his colouring book to school with him and we said YES!  Absolutely!!

We also noticed that he didn’t want to eat while on the drug.  We knew this was one of the side-effects, but thought that maybe Liam wouldn’t be affected as his appetite was always huge.  It was a big surprise when he didn’t ask for a snack or a meal until later in the afternoon.

By the Wednesday, Liam developed a very high fever.  I gave him some meds to bring it down, but it didn’t help.  I work from home, so had been busy in the office and I wasn’t able to pay too much attention to Liam, but by 5pm his fever was rising and I didn’t like it.

I was convinced it was the Ritalin (still am), I took him to the ER and had the Doctors take a look at him.  They ran blood and urine tests on him, he had x-rays taken, but the Doctors couldn’t explain the fever, they did say that it couldn’t have been the Ritalin though…

Eventually once they were happy his fever had broken they sent us home with some meds and told us to keep an eye on him.

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Sick day from school

Soon after returning home his temperature started to rise again and we gave him some of the meds, which he threw up immediately.  I decided to give him Nurofen instead and it brought his fever down again.  We kept him home from school the next day and he seemed fine, went straight back to colouring-in.

We were almost near the end of the school year and I was hoping for some positive feedback in the last term, but as always, discussions were always only on the negative and never on the positive.  Liam was struggling socially, now more than ever as he would take his colouring-in book to school and just sit and colour.  He still struggled to follow instructions and they were concerned about his concentration.

I felt so frustrated.  We were doing everything we could, what was the problem!?  Why couldn’t we have a parent/teacher meeting that also focused on the positive.  I felt that Liam was ahead with his reading.  He was reading Dr Seuss green back books without a problem earlier in the year already, I knew for a fact that some of his schoolmates weren’t able to read yet.  In the meetings I would always get the ‘Liam is behind with this, and Liam is behind with that’, ‘his classmates can do this, but Liam can’t’.  In my desperation to get something positive out of his teacher once, I asked her how his classmates were doing with reading, she told me that she cannot discuss or compare Liam to the other children.  URGH!  Complete and utter frustration!

Luckily his reports were always pretty good for a kid who had so many issues and difficulties.  His strengths seemed to be in Math and English, his weaknesses were usually with Art and PE.  However, with PE, no matter how many times I explained that Liam had no depth perception, this was never taken into consideration.

Liam graduated Grade 0 and we had school holidays and Christmas.  I didn’t give him Ritalin during the holidays.

He started Grade 1 at the new school in the new year and I had high hopes that things would begin to improve.  And they did.  Liam was getting more attention in his classes.  His teachers had wonderful things to say about him.  We had our first parent/teacher meeting during the first term and I have never had such positive feedback.  The meeting was done in such a way that, although there were a few issues that they had noticed, the focus was on the positive.  I really felt we had made the right choice with his new school and I loved the intimate setting.

We saw such great improvement that Liam’s Occupational Therapist felt we could end his sessions with her.  His Vision Therapy also came to end as they felt there wasn’t much more that could be done at the time with his vision.  For the first time in so many years we were no longer rushing from one therapy session to the next and from one appointment to the next.  It was wonderful!

During the July school holidays I made a decision and took Liam off Ritalin completely.  I decided that I wasn’t going to tell his teacher that I had taken him off, I wanted to see if she would notice.  My plan backfired in August 2016 when I got a message from her saying that Liam was having trouble concentrating in class.  Oops.

I didn’t have any Ritalin at home as we had run out and we needed to make an appointment with the Pediatric Neurologist again to renew his prescription.  Luckily because Liam wasn’t a new patient, we got an appointment to see her the next week.  She saw Liam first, then asked me to go through while Liam waited in the waiting room.  She asked me why I had taken Liam off Ritalin, I told her that I wasn’t entirely happy with him on it, he had no appetite while on it and I was worried about the other possible side-effects.  I preferred him off Ritalin, but was also concerned about his school work if he didn’t have it, so I was extremely conflicted.  She chatted with me for a while and we agreed that Liam would go back onto Ritalin, but we would ween him onto the slow release kind.

I had to give him his normal dosage first, then after a couple of weeks start giving him the slow release, higher dosage tablet.  One day before I gave him his first slow release tablet I noticed he started to jerk his hips.  I didn’t want to panic about it because he had displayed some ‘tic’ behavior before when he was much younger, and after a couple of weeks the ‘tic’ would disappear as fast as it started.  I spoke with Ray about it and we decided that if the ‘tic’ persisted for longer than a month, we would contact his Doctor.

As the month went on we noticed that if he was sitting down, he would thrust his hips, if he was standing up, he would jump.

It did appear as though the ‘tic’ had started to subside, and so I didn’t contact his Doctor and we pushed on.

During the final term of school I noticed that Liam started jerking his shoulders upwards, after witnessing this for a few days I took him off Ritalin and decided that I would never put him back on it, there had to be another way.  I had read that if a child displays ‘tics’ whilst on Ritalin, you should stop the dosage completely and the ‘tic’ should go away.  Unfortunately this was not the case.  Soon he was jerking his shoulders upwards and making a sound like ‘uh-huh’ at the same time.

During the time, I was visiting our family GP for a hormone issue I was going through.  I told him about the ‘tics’ Liam was displaying at the time and I gave him the low down on what had been happening over the last year since he started Ritalin and that I had decided to take him off it completely.  He asked me what Liam’s EEG results were and I told him that his Neurologist had said it wasn’t necessary.  I got such a fright when he suddenly said loudly ‘NO!  Nobody should ever be put on Ritalin without an EEG!’  The blood drained from my face.  I felt accused, and my response was something like ‘You know!  All you doctors are assholes, one asshole says this and the other asshole says that!  We put our trust in you.  I don’t have the qualifications you are all supposed to have.’  His reply ‘You need to take him off Ritalin immediately.’  My reply ‘I told you that I took him off Ritalin last week already!’  In my defense, I was there for hormone issues and I realise my reply was extremely defensive and childish and that he was in fact upset with the Neurologist and not with me.

He wrote a referral for an EEG and I left feeling angry at the Pediatric Neurologist, I had asked her if we can do an EEG and she had said it was not necessary.  Now my child was ticcing all over the place and I felt like we had taken a massive step backwards.

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