NEVER EVER GIVE UP! One Mom’s Struggle to Help Her Son
by Megan Pringle (see bio below)
We don’t come from a family of allergic people, although there is a history of family members (on both sides) with autoimmune diseases. So, when my Logan, at age 2 developed mild seasonal eczema as well as seasonal allergic rhinitis, we were able to manage it fairly easily with nasal sprays, antihistamines, moisturizer, emollients and the very odd application of topical cortisone.
Fast forward to 3.5 years old. Suddenly Logan’s skin took a massive turn for the worse. Full body bright red welts, weeping skin, intense itching. And nothing helped. It could not be kept under control. We suspected everything from the washing powder, to the carpets, to the fact that certain times of the year birds used to nest in our roof. I cleaned the house like a maniac on a daily basis worried the dust was affecting him. He ended up with a severe staph infection, which saw him covered in pimples from head to toe, even in his scalp. His skin was flaring up all year round. More visits to the same GP who told me ‘there is nothing we can do – just accept he has eczema’. Another GP I saw told me I was neurotic for keeping a detailed diary trying to find some kind of link to why he was so sick. I left there in tears, completely devastated that we were not getting the help we needed. Skin prick tests showed that he was allergic to cats, pollen, grass and dust mites. No food allergies presented.
The next 3 years were extremely difficult. Skin issues on and off. The itch and the scratch was uncontrollable and intense. I would constantly get phone calls from the school asking me to fetch him as he had been scratching until he bled. I was getting very little sleep and trying to balance being a single mother, who worked full time with a son who needed care, and expensive medical attention. We moved house in a desperate attempt to see if that made any difference.
August 2012 again in desperation we visited a different university allergy diagnostics centre. I wanted a complete allergy blood test done on him but they pushed me into another skin prick test – telling me ‘it isn’t necessary’ and will yield the same results as a blood test. The test showed the same results as before – AGAIN we were no further to a solution. He suggested an elimination diet – cutting out wheat (but we could still have rye!) – dairy – and many more things. We struggled on with this diet for many months with no effect. In fact over Nov/Dec/Jan 2013 things took a turn for the worse, if that was even possible. I got married in November and Logan was so sick he had to leave the wedding early with my mother, as his body was so sore he couldn’t stand up. I find it hard to look at our wedding photos for this reason.
He was fading in front of my eyes. Face pinched, drawn and gaunt, dark rings around eyes, getting skinnier and skinner every day. He was also getting terrible large painful boils all over his body. I made the decision in January to take Logan out of school for a few months to recover.
At this stage – I again requested full allergy blood tests, blood count, thyroid test – from our pediatrician. I was terrified my child was dying and had some terrible illness like cancer, that was being undiagnosed. Again, I was told, it’s unnecessary and expensive – and was offered more oral cortisone to clear his skin, and antibiotics to clear repeated scalp and skin infections, stronger antihistamines, tranquilizers to help him sleep. Regardless of the fact that I kept telling them ‘this is not just eczema’ nobody would listen.
Here there we were with 7 GP’s, 2 allergy specialists, 1 pediatrician and 2 dermatologists (not to mention the myriad of well-meaning strangers who stop you in shopping malls and offer advice of teabags in bath, and all kinds of weird and wonderful homemade concoctions).
Then: earlier this year, we were referred to a professor of immunology who did a stool sample test on Logan. The Professor took one look at my son the day we walked in and was absolutely horrified that nobody was taking this seriously enough. ‘This is not just eczema’, he said, ‘This is a systemic inflammation and infection problem’ leading to failure to thrive. My son has always been small, but at 6.5 years old he weighed just 15.6 kg (34lbs) and stands only 108cm (42 in.) tall!!! Frightening! But this still had not been enough to spur the previous doctors into action.
The results of stool sample showed severe inflammation of the gut, as well as candida levels 1000 times higher than normal. It also showed positive results for Celiac disease. He told me that the many years of strong medication to fix his skin, had destroyed Logan’s natural gut flora, which had led to a leaky gut, inflammation and the inability to absorb nutrients. Not to mention the effects the untreated celiac had been having on his digestive system. Up until now, he had a bloated, hard, distended stomach, often complaining of stomach pain, lack of appetite, irregular hard pellet shaped bowel movements. His muscles were wasting away – there was loss of weight and hair loss. Wounds would take very long to heal… Excessively dry, skin and constant uncontrollable skin flareups with no apparent trigger. For the last 5 months he was extremely tired, depressed and lethargic, and could not summon the energy to get out of bed much at all. It was frightening to see my child like that. It didn’t matter what Logan ate, he would react to everything. His skin would literally break out ‘for everything’ and we wracked our brains trying to figure out what we could give him and what we should stay away from.
The professor told us to use a turmeric based supplement powder to heal the stomach, as well as grapefruit seed extract drops to kill off the candida. Twice daily doses of a good probiotic, as well as a daily multivitamin supplement, a zinc supplement, omega oil capsules, and L-Glutamine. The professor gave us a time frame of 4 months until ‘we would have our son back’.
Food wise – we needed to cut out gluten of course due to him having celiac disease. Potatoes, rice, chicken, meat and fish were all fine. Dairy I was nervous of, as he seemed to react to dairy in the past, so we are keeping off it for now. Same for corn. Veggies of all kinds he can eat, which is fantastic, but we were told to stay completely away from sugar, from fruit juices, and fruits that ferment – namely grapes, mangoes and pineapples. Preservatives and additives are a no no. So basically what he is eating now is an extremely HEALTHY diet, one that anyone could actually live on indefinitely, not nearly as limiting as a food elimination diet. As time goes and we see improvement, we can try adding certain things into his diet, and seeing the results. The aim right now is to HEAL THE GUT so it is able to handle and (most importantly) ABSORB the nutrients he needs to grow and thrive. The idea is: healing the reaction and inflammation inside – will heal the reaction and inflammation outside.
(I just would like to add that I am still consulting with the professor, alongside Logan’s pediatrician and our family GP – keeping them all in the loop with his treatment and progress. For once I can say we have a good TEAM. I am able to email each of them at any time and send them regular updates of how he is doing. It makes such a huge difference having the RIGHT people on your side.)
As far as results go – after one month of this treatment…here is what we have noticed.
- Energy levels are back (and then some!) he is playing, acting silly, laughing and running around, instead of being confined to the bed, unhappy and depressed.
- No more complaints of a sore stomach & swollen distended belly has gone down.
- Regular daily bowel movements.
- Massively increased appetite. (He is eating us out of house and home!!)
- Drastic improvement in skin. We are still seeing redness and flareups – but they are isolated to one part of his body at a time, they take place far less often, and tend to subside very fast. His skin is well moisturized and completely clear in places. At the moment we are still struggling with feet, hands and head, but even these are not ‘open and weeping’. The intense uncontrollable itch is under control.
- Our use of cortisone has drastically reduced, as has our use of antihistamines. We still use them as needed, as instructed by the professor, and we still continue with our skin care regime of regular moisturizing with a good cream, and emollients in the bath. Even the wet wraps we used to use (which are a wonder) we no longer need.
We are looking forward to even more improvement as time goes on…
WHAT I‘VE LEARNED
I’ve learned that as a parent or a patient, YOU have to be the one that pushes for treatment and investigation. You have to be firm with the doctors and demand referrals if you feel they are not listening to you or helping you. You need to read up as much as you can to find out more about your condition. You also have to be able to distinguish between the millions of ‘miracle cures’ out there and something which is valid and could work for you. You also need to take help and advice from the right people, and ignore the rest. Sometimes it’s okay to fall down, and let people catch you but NEVER EVER GIVE UP!
Bio: Megan Pringle, mom to Logan (age 6), and works in fundraising for a non-profit hospice organization in Cape Town, South Africa.