Hello everybody, I am the mother of a clever, 6 year old boy with whom we have great fun but whose health problems are troubling and complicated. The doctors have not been able to figure out what is causing his health problems. He has no siblings. We live in the Netherlands.
A Difficult Pregnancy and Some Early Clues
Going back to the very beginning, it took us a while to conceive, nearly two years. Although I had been pregnant before, I had one miscarriage at 8 weeks and was very stressed that I would never have a child. I was 31 years old when we finally conceived. During the pregnancy, I was happy but had every imaginable pregnancy issue under the sun. I felt ill during the entire pregnancy. I experienced extreme sneezing in the beginning, to the point I thought it would provoke a miscarriage. I blamed it on the increased blood flow going to the nose membranes. I am the allergic type anyway. I had asthma and eczema as a child as well as a peanut allergy and hay fever.
During the pregnancy, I developed hemorrhoids and varicose veins, and I had extreme pain in my hip joint. It was to the point that I could not walk long distances or lie on my side. The hip pain took two years to resolve. I also had an extreme amount of amniotic fluid. The doctor said that I had 10 times more than normal and had an enormous belly as a result. Only when I was 41 weeks pregnant and there was no sign of the upcoming birth, did they want to test for pregnancy diabetes, but then it was too late and labor was induced at 42 weeks. The strange thing was I felt fine for 9 months apart from all the minor issues.
Even with the oxytocin given, the birth took 17 hours and I had to take a lot of morphine. The result was a seemingly healthy boy of 4050 grams (8.9lbs) delivered in the middle of the night. He did have cryptorchidism (an undescended testicle), though. We had to leave the hospital directly at 6 am and were sent home after spending three days there. I didn’t sleep for those three days and couldn’t catch up at home due to baby being awake at night. This resulted in a pretty severe postpartum depression with a lot of anxiety. I couldn’t sleep at all anymore. We lived with my family in law for three months. I had to protect myself. After this, I developed sleep issues began taking lots of medication. This more or less resolved spontaneously last year – after 6 years.
From Cryptorchidism and Skin Issues to Kawasaki Disease and Vernal Keratoconjunctivitis
At one year old, my son was operated upon for the undescended testicle. During his early years, he became constipated by cow’s milk as a baby and developed slight eczema; nothing too bad. He had a croup attack once at one year old and a bad streptococcus skin infection at two years old. When he was four, he developed pneumonia twice. Then, at five and a half years old, he developed Kawasaki disease and was hospitalized twice and treated with immunoglobulin. Through all of this, we have followed the standard vaccination plan with him.
He is now 6 years old and our latest problem is what I have been told is a rare disease called Vernal Keratoconjunctivitis (VKC). It is a form of chronic allergic conjunctivitis that can be quite serious. The only treatment is steroid eye drops, which help somewhat, but not completely and have side effects. VKC hinders everyday life. We have to avoid sunshine and wind and swimming. Even watching TV is problematic. Per the physician’s suggestion, we have sanitized the whole house and his bed, but he still sneezes when going to sleep. Just last week he was diagnosed with house dust mite allergy.
Although each of his conditions seem separate, I cannot help but wonder if everything is connected somehow. I suffered terribly from severe allergies during pregnancy, did this predispose my son to suffer similarly. I also had a quite a difficult time conceiving, carrying to term, and then suffered from postpartum depression. Each of these is related to hormone imbalances, particularly in the androgens. Similarly, the undescended testicle, Kawasaki and VKC are each associated with hormone disruption, which are, in turn, linked to immune system dysregulation.
Or could there be something in our house that is causing distress for all of us. My husband has always been in good health and never was allergic, but at the same time as my son, he developed sore and red eyes too. He was suddenly also tested positive for house dust mite allergy at the age of 42! Or is it the streptococcus bacteria which is still alive in our son’s skin. We can see it popping up sometimes when his immunity is low fighting a cold. My husband also was infected with this 4 years ago, right in the corner of his eye. Maybe the bacteria is active there now?
Where Do We Go From Here?
VKC opens a door to immunotherapy, but this is a long haul with an insecure outcome as far as the effect on the eyes. Maybe we should try other medicines on the market first, or even search the help of an endocrinologist for the low testosterone or a mast cell expert? Or up his B vitamins? I just don’t know where to begin. Ordinary anti-histamines don’t help in the case of this disease. It is not just a short reaction to an allergen, it lingers and comes from within. It is like the body is looking for an excuse to keep the inflammation up. We are trying to live a healthy life style. Until last year he drank a lot of rice milk and ate soy products to replace meats. We have stopped this, when he got Kawasaki. Not knowing what on earth causes this. No one knows. It resembles an allergic / auto-inflammatory reaction to a virus, bacteria, or chemical. However it is not chronic, in contrast to the eye disease which might prove a far more serious challenge.
Sorry, for the long story. I think this is most of the relevant information. This is not about my emotions, but I can tell you I feel like I am fighting to make sure my son doesn’t turn blind. This is extremely stressful and the only thing on my mind right now.
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This story was first published in December 2019.