My child had been chronically ill for two years and I wanted answers

When Avashna Toolsee’s chronically ill daughter Juhi was finally diagnosed with asthma, it signalled the end of a two-year struggle of medical trial-and-error type treatment and the start of her journey to recovery. By Lynne Gidish

“Juhi was born in 2012 and was a healthy little girl. For the first two years, she never picked up any bugs when she came into contact with other kids and didn’t display any of the usual teething symptoms. A couple of months after her second birthday, she developed a fever and what I presumed was a common cough and cold. I self medicated with cool compresses and analgesics, but when the fever persisted and the cough got worse I took her to her paediatrician who added an anti-inflammatory.

It didn’t help, so we went back and her medication was changed. She improved for a couple of days before deteriorating once again – something that was common over the next two years. We came away from our next doctor’s visit with something to try to release the phlegm in Juhi’s chest and, as previously, the symptoms subsided for a day or two then flared up again.

My little girl would be fine and active during the day, but she would cough all night and be struggling to breathe. Neither of us got any sleep. At times her cough was guttural and quite frightening – it sounded as if her chest was going to explode.

Nothing she’d been given seemed to work and the only time we got any relief was when I decided to try some natural home remedies. They worked for about four days and we both had the chance to sleep, but it wasn’t long before the cycle began again.

ALSO SEE: Top 8 natural remedies for your family

This time, she had to be nebulized and was put onto cortisone. There was still no diagnosis and everything was being done on a trial-and-error basis: using a humidifier, switching off the aircon and trying new meds. I spent hours researching the symptoms that plagued my child and was anxious and frustrated when nothing made sense.

The pattern continued: a few “good” days followed by illness. Then Juhi ended up in hospital for three days with what I was told was pneumonia. I was horrified. How had this happened after all the medical treatment?  She was put on a drip, which was traumatic for both of us, and when the doctor told me her breathing wasn’t where it should be, I was terrified something was seriously wrong.

While she was in hospital, I met a paediatrician who specialised in childhood allergies and decided to take Juhi there for a second opinion. By that stage, she was three and was due to go to nursery school. The new doctor changed the meds and put her on nasal sprays and she seemed to be OK for a while. However, every change of season she’d get sick all over again. She’d be treated symptomatically – sometimes with antibiotics – and she’d recover for a few weeks and then we’d be right back to square one.

ALSO SEE: Everything you need to know about allergies

The day I had to rush Juhi to the ER to be admitted because she couldn’t breathe was the day I’d had enough. My child had been chronically ill for two years and I wanted answers. What were we dealing with and, more importantly, how could we fix it? That’s when we were referred to a paediatric pulmonologist – with a four-month waiting list! I was so desperate that I put her name down for an appointment and our lives carried on with the continuous cycle of illness. When my mom passed away, I was at the end of my tether, trying to cope with the grief and a very sick little girl. I called the specialist’s rooms in desperation and they miraculously slotted me in.

From the minute we met the specialist, I knew everything was going to be OK. When he diagnosed asthma and explained the condition everything immediately fell into place. For the first time, I felt calm and in control because I finally knew what the problem was. It took about three weeks for me to get familiar with the medication and for the meds to kick in. We then settled into some type of normality where we both managed to sleep at night. As before, when the seasons changed, her health was affected but not so acutely that she was up all night or had symptoms for more than a day or two. I now had support from a specialist whose treatment was on point whenever I called and this helped me to become more confident at finding my own rhythms and juggling Juhi’s medication accordingly.

Over the years, we have learnt how to manage her asthma and the doctor is happy with her progress. This has been a tough and expensive journey, but Juhi and I have come a long way. It’s been scary and frustrating at times going from doctor to doctor and having no idea what was going on.

As a mom, if you’re not getting the right help and the right answers it’s important to keep looking until you do. Even if you have a history with your doctor, don’t be afraid to ask for a referral to a specialist. Remember, it’s the “Why?” that’s important when it comes to getting a diagnosis, and if your doctor can’t tell you, you need to see someone who can.

ALSO SEE: 3 kids, 3 different disorders – a mom shares her story

Paediatric Pulmonologist Dr Steve Ponde answers five frequently asked questions about childhood asthma:

Should I move to a different climate for my child’s asthma?

Asthma can be controlled no matter where you live.  A key factor is avoidance of allergens. Asthma symptoms often improve in different climates because the patient is not in contact with allergic triggers.

Why is my child’s asthma worse at night?

Most lung conditions get worse at night. Her asthma is likely not well controlled. Inflamed airways and contact with allergens such as house dust mites from bedding could also trigger asthma symptoms as can indoor irritants, parental smoking and cooking fires.

Will milk and wheat worsen my child’s asthma?

If your child is allergic to milk or wheat she will react to these foods.  Asthma does not get worse if you consume foods that you are not allergic to. As a general rule, I would recommend avoiding all artificial colorants and preservatives. There are effective tests to determine if your little one has food or inhaled allergies.

ALSO SEE: When and how to introduce allergy foods to your baby

Will my child become addicted to her medication?

Your child can’t become addicted to asthma medication, even after long-term use. There is no need to increase the doses to get the same control. Doses may be increased by your doctor as your child grows to accommodate her growing lungs

Can I use cough mixtures to control my child’s cough?

Some ingredients in over-the-counter cough mixtures could worsen asthma symptoms. Some cough preparations could further suppress the asthmatic child’s respiratory system. Rather use her rescue inhaler when she coughs.

ALSO SEE: Common medicine mistakes parents make

3 common asthma myths busted

Myth: Asthma should only be treated when symptoms are present

Truth: You don’t only have asthma when you have trouble breathing. Asthma needs to be treated daily with maintenance medication and with rescue medication when symptoms are present

Myth: My child will outgrow her asthma when she’s older

Truth: Asthma is a genetic condition that may go dormant for a while, but you will always have it. It may return later in life.

Myth: My child can’t exercise if she has asthma

Truth: Exercise could be a trigger of asthma symptoms. All asthmatics who are well controlled can and should exercise – even severe asthmatics benefit from strengthening the heart and lungs with exercise.

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