Pain Relief for Boys

In Jan 2014, my two sons (then 11 and 13 years old) and husband were swimming at low tide at Paraparaumu Beach diving to the murky sandy seafloor collecting sand dollars.

Thankfully my daughter and I chose not to swim that day. The next day in the local paper there was a warning not to swim as there had been a toxic algae bloom in the estuary. The tide was fast running from the estuary to where our family was swimming - thankfully we were the only ones swimming that day.

The next day my youngest son could not walk unassisted and needed crutches for the next 3 months as he underwent a battery of scans and tests.

He was diagnosed with Chronic Pain Syndrome after exposure to a neurotoxin released in that Toxic Algae Bloom in early 2014.

My husband and eldest son could walk but had crushing pain in their spines which worsened over time.

They were both diagnosed soon after my youngest.

I watched my active happy boys (now 12 and 14 years old) deteriorate over the last year and with no relief in sight, just a lifetime of learning to handle severe chronic pain ahead of them.

It is incurable and the only way they had any relief apart from medications was distraction therapy ..television or PlayStation or swimming at the pools.

After months of pain and a great number of different medications, it was found that only a very potent drug called Tramadol had any significant impact on their pain.

After a year where the boys could only manage 30% attendance at school, the Tramadol seemed like a miracle drug, and for a short time I felt I had my boys back! Happy, healthy and active. They managed 90% attendance at school in term 1. There was a cost though - not financial but in terms of the medications they had to take to make it. They were on: Tramadol, Codeine, Voltaren, Panadol and the two extra medications to counter the effects of Codeine and Voltaren. 8 pills to get to school.

Slowly though their symptoms have worsened as these medications gradually stop working and become part of the problem, actually causing the pain after prolonged use.

After consulting with our pediatrician and a referral to the pain clinic it was recommended that because the boys were still at crucial stages of their development, they should not take any pain medications long term and should explore other methods of pain relief. They recommended removing as much of their high level pain meds as possible. This of course, increases the pain that they have to deal with on a daily basis.

This has been very difficult as TENs, meditation, and hypnotherapy therapy have had very limited effect on their ability to cope with their pain. My youngest could not even tolerate light touch anywhere on his legs.

There is no public funding to help my boys with regular massage or spa access, and every day they are in so much pain it breaks my heart!

Hydro Therapy (hot spas) certainly give relief when we could afford the $10 per child daily to access it at the local pools, but proved too expensive to continue, as my husband had to have a year off work with his pain. The activity of getting there and home means that by the time we got home, the relief had ended. We do have an old spa pool at home but could not afford to repair it or run it, over the period of their illness as it has a serious leak and a rotten cover and needs repairing/ replacing.

My husband has started work again back in his specialty area, and survives with medication and will power. However after over a year unemployed, we are in a hole financially which will take us a while to get out of.

I also suffer from Chronic Arthritis in my hips and knees. At the beginning of this crisis, I dislocated my left knee, making mobility very painful and limited. It took a year to recover from that, as we could not afford physiotherapy, and it has left me with a permanent limp and a chronic pain of my own.

I have managed to find some part time work which suits my limited mobility, but it is commission only and some weeks pays, and others doesn't. And I have had to spend the majority of my time supporting the boys through it all.

I was just given some hope at the Better Home and Garden Show last weekend where I tried out a very soft massage bed with a number of different options for gentle massage programmed in.

The stall operators offered to come to our home where my husband and sons were able to lay on the bed and experience for the first time in over a year, significant relief from their symptoms. I had not seen them relieved so much in the whole period of their illness.

Although their pain returned gradually, another session on the beds gave them enormous relief again.

My youngest who still has a lot of pain with walking said it relieved his pain by 50%!!

We are hoping that the combination of massage bed and hot water spa therapy will enable them to live their lives without drugs, and more fully. We also hope to help them to have periods where their activity levels can pick up and their participation in school life will increase. . We are aiming for full attendance at school, and we believe this will make a big difference.

If you choose to give to us, the funding will be used for:

We are hoping that by explaining their position to you all, that with your help we night be able to purchase a massage bed $6999.00) for the boys (and my husband) to share, especially before/after school to keep their attendance up, and at bedtime when sleep is difficult).

We also hoped to be able to repair our old spa (needs re insulating and a new lid, and leak repair) or replace the spa pool with an econo spa which uses less electricity as it has fuller insulation and covering. We we all get such relief from pain from the hot spa, and when ours was running it was in use every day with great effect on sleeping at night and relief from pain.

A friend took the photo below and they liked it, although they are older now.

Thank you for reading our page here, and for your consideration.

All the best

Glen and Clare Omvig