Wednesday, October 17, 2012

A long overdue update -- one great year with hookworms!

I started writing a post back in the end of June, for my daughter's and my wormaversary at the end of June, but never got around to finishing it. We had a great and busy summer. And so, now this long belated update. I will break it into separate blog posts for each of us as I have done previously, or it will be too long to read in one sitting.

Our family had a fantastic summer. This was the first "normal" summer we have had since my daughter was born, nine and a half years ago. Both she and her brother made huge developmental strides this year and we are thrilled.  Both were very healthy all summer long.

We have been members of a community pool from before our daughter was born. She was so sick that we have never really been able to go there that much. Both she and her brother were so thin that they would start to get hypothermic if the water was below about 95°F and this despite the fact that both of them wear neoprene shortie wetsuits on top of their swimsuits. We have been trying for years to teach both of them how to swim. Well, this year it finally happened! My daughter got over her phobic reaction to having water in her face and taught herself to swim. My son took lessons and learned.

My daughter was thrilled to go to the pool with her best friend, that relationship being another huge milestone for her. They are thick as thieves and it has totally changed her life. She looks forward to going to school now, because she wants to be with her friend. She is blooming socially. A huge part of it is that the hookworms have drastically reduced the amount of anxiety she experiences on a daily basis. She is even making friends with other kids in her class and feels much more socially at ease.

I have started giving her Floradix, the German liquid iron supplement. She has been borderline anemic for a while. She could never tolerate it before because it has traces of carrots in it and she was reactive to carrots. She is not reacting now. Taking this supplement has dramatically increased her appetite. She is actually eating somewhat like a healthy child now, something that has never happened before in her life. She went to the doctor last week and weighed 56 pounds, the highest weight she has ever had in her life. She has gained at least 13 pounds since we went to San Diego the first time. This is amazing, given her average weight gain per year since her first birthday has been about two or three pounds.

She was playing with her brother the other day and they were discussing airplanes and she said to him, "I'm so glad that there are cheap airplane tickets because if it weren't for cheap airplane tickets, we wouldn't have gone to San Diego and now my eosinophilic esophagitis is better than it's ever been!" She has told me repeatedly how lucky she feels that I found out about this therapy for her and that she was able to have it.

She has gotten several foods back -- tomato, rice, and potato. She also is able to tolerate dairy much better. She's currently only eating actually eating organic butter and food that has cow's milk baked or fried into it (like a muffin or cookie), but her ability to tolerate these small amounts of dairy is dramatically better and a huge achievement.

More amazingly, she is using a far smaller amount of steroids than in the last three years. She is using about half as much Pulmicort on a daily basis and has had very little esophageal pain. She is so much better than we are able to start disambiguating her physical issues which we could never get to analyze because there was so much going on with her esophageal pain. She is sleeping much better now than she ever has in her life.

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