The past couple of months have been very taxing for our younger daughter. She had several rounds of fevers, colds and coughs on top of her chronic diarrhea which has been going on for 9 months now. There were also 2 absolutely horrendous weeks of hive-like rashes called urticaria. It started from her legs and progressively spread all over her body, the itching intensifying every day. Initially, the rash and itching was isolated, but everyday there was a little bit more. In the first week, with the help of our local GI paediatrician, we managed to control the discomfort whilst investigating the cause. However by the 8th day, my little girl was in absolute agony. She would cry and scream trying to scratch herself and not finding any relief.
This is the first time this has every happened, I don’t recall this kind of rash happening to either girls before. Paul and I felt so helpless, watching our little girl covered from head to toe in huge red welts, her hands and arms were swollen. During that 2 week period, we went to see a doctor just about every single day, we ended up seeing 4 different doctors. It seemed that nothing seemed to help, the antihistamines, painkillers and other remedies or drugs did not reduce the swelling nor provide relief for the itching.
In the 2nd week, for days and nights Yasmin would cry nonstop and madly scratching herself. We used calamine lotion, 3 types of antihistamines each stronger than the previous and other treatments. For the first 3 days there was some vomitting and mild fever. But later, there was no more vomitting but with intermittent high fever that doesn’t recede with ibuprofen or panadol. Only voren suppositories could bring down the fever.We did a blood test for kidney and liver function and mycoplasma, they turned out to be negative, but the markers were slightly elevated in one of the liver function profile.
Everytime Yasmin was not in an air conditioned room, the itch intensified and her fever spiked. The 1st week of rashes also coincided with the day of the conference in Singapore, which Paul and I were looking forward to. We didn’t want to miss hearing Dr James Partington and Dr Kenneth Bock’s talk, it’s a rare opportunity to hear world-class Autisms expert talk for 3 hours each. But neither could I bear to leave my sick child at home even though my parents were willing to take care of her.
Paul and I decided to pack up the whole family and drove down to Singapore the day before the conference. We also managed to get a quick consult with the girls’ regular doctor there and get a 2nd opinion. We managed to keep Yasmin somewhat comfortable though we could see the rashes were still bad.Nontheless, the girls love going to Singapore and especially love staying in hotels. They were happy enough and we didn’t feel too bad about taking Yasmin away on a trip, even though we should never take a sick child travelling. Right or wrong, it was a choice that Paul and I made.
The next morning, it was hard to concentrate on the presentation. I was incredibly tired from repeated sleepless nights caring for Yasmin plus I had bronchitis. God, please forgive me for spreading my germs to the other parents who attended the conference. Though I had heard both Dr Partington and Dr Bock just a couple of weeks before that in Hong Kong, it was still incredibly beneficial. You just can’t learn enough I feel. It was also good to meet new friends and catch up with old ones, though in the back of my mind I was incredibly worried about Yasmin. She was never far from my thoughts even though I was chatting to people or concentrating on the biochemistry lesson courtesy of Dr Bock. Paul was kind enough to stay with the kids and our nanny while I went to the conference first for Dr Partington’s lecture. He made sure Yasmin was stable enough and that he could safely leave them for a few hours with our nanny. Paul managed to join in for Dr Bock’s portion. Our hotel was only a few minutes drive away so we knew that in case of an emergency phone call from the nanny, we could rush back to our girls quickly.
The day after the conference, before we drove back to KL, we also saw a pediatric immunologist in Singapore. We also wanted to make sure that Yasmin would be ok for the 4 hour drive home, to have some temporary solution so that Yasmin won’t be too uncomfortable during the car ride. The doctor was very concerned about her immune system and recommended that we see an immunologist in KL for further investigation. She suspects the fever and rash was a viral infection rather than an allergic reaction. She gave us some medication to control the fever and itchiness. The drive back to KL wasn’t too horrific, thank goodness.
Back in KL, we saw our regular pediatrician again and we also managed to get an appointment with the only pediatric immunogist in Malaysia. They are working together to investigate Yasmin’s condition, namely inflammatory bowel disease and her impaired immune system. Our consults and testing with the immunologist unfortunately could not bring us any closer to a resolution. But by then, he had identified enough that her immune system is compromised and everything led back to issues with her GI disorder. After all, 70% of our immune system lies in the GI tract. Again, the topic of endoscopy had come up.
Yasmin’s rashes and fevers went away after a course of antibiotic, our paediatrician prescribed it because the rashes were so bad that it caused swelling and infection of the fat layers of her skin. The Rash Incidence has been so traumatizing for us that it took me a long time to even be able to talk about it or write about it till now, 2 months later. Since then, based on the recommendations from our doctors, we have taken steps towards getting closer to healing Yasmin. We did an xray which confirmed fecal impaction, thus we put her on laxatives and enemas. This gave her much relief, her tummy was no longer bloated, her mood and behavior improved and her appetite was much better. However, after some time, the symptoms would return. We have also been battling constant colds, flus, fever and coughs. Till now, I dread the rash would return. The Rash Incident was more traumatizing for us compared to her previous hospitalizations, can you believe it?
I also finally had the time to read Dr Andrew Wakefield’s book Callous Disregard. This turned out to be very timely for me, as Dr Wakefield included many case studies of children he’s worked with. There were many references to bowel disease, immune dysfunction, chronic diarrhoea, behavioural issues due to GI disease, endoscopies, gastrointestinal symptoms – everything that I was going through with right now. It is a huge loss to the medical world indeed and Autistic children worldwide that a gifted paediatric gastroenterologist was struck off the medical register due to biased misrepresentation, government blunders and the profit margins of vaccine manufacturers. Meeting him again in Hong Kong and listening to his lecture also gave me the resolve to go ahead with the endoscopy. Paul and I had many misgivings about doing the procedure for Yasmin, but now our fears have been allayed. I also read again Dr Elizabeth Lipsky’s book Digestive Wellness and anything else that related to IBD and GI diseases.
I am working closely with my pediatric GI doctor as well as the peadiatric GI surgeon who will do the actual procedure. We are in the midst of preparing for the endoscopy and possible colonoscopy, which will also include more consultation, scheduling and booking the operating theatre and anaesthesiologist, blood work and biopsy. All her symptoms and conclusions from the many doctors we consulted points t
owards IBD, Inflammatory Bowel Disease. So now we are STILL in the initial stages, which is getting a proper diagnosis of which type of IBD or another type of GI disease. However, I am hopeful that we are on the right path. Once the endoscopy and findings confirm it, we can then proceed with treatment. What the treatment will be depends on the diagnosis. And if everything comes up negative, I will deal with it when the time comes. Right now, diagnosis first……..