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Keeg visited his neurologist the day before yesterday. We went over various tests that were performed during his latest hospital stay. It was determined that Keeg's magnesium, Vitamin B12, and his iron were low.  We've previously discussed how it appears that Keeg's body is not absorbing the nutrients and vitamins it should from the foods that he eats. He eats large quantities of food throughout the day and eats a healthy diet. However, it never seems that the foods benefit him as they would a healthy person.

The neurologist also mentioned that the results for tests related to Epstein Barr showed very high titers. Epstein Barr is a virus that causes mononucleosis. Mononucleosis was the initial diagnosis Keeg received at 4 years old (after several weeks of being sick). However, the doctors then explained to me that mononucleosis did not explain why his lab counts were so out of whack (many items low, many items high) nor did it explain why his immune system responded so violently to the Epstein Barr virus (EBV). Doctors assured me they felt that something else was wrong and causing the violent reaction to EBV, but they didn't know what it was.

Keeg has consistenly had a low platelet count and low white blood cells. The neurologist also said that Keeg has neutropenia, which is a low neutrophil count.

I asked if there was the possibility of Keeg's health problems having caused the Asperger symptoms he was now exhibiting and the neurologist mentioned the possibility of Childhood Disintegrative Disorder.

Yesterday, Keeg went to the first set of appointments with a neuropsychologist to evaluate him for Aspergers.  The doctor asked many questions about Keeg's childhood. The more I answered his questions, the more I realized that Keeg had always shown the signs of Aspergers. We talked about how at 5 years of age, Keeg's grandfather sat down and introduced Keeg to a game of chess. Keeg spent the rest of the night playing chess against various adults, doing so well that it was as if he'd played for years. Around the same time Keeg was introduced to the game "Pillars of Plato" and excelled at it as well. Keeg never really played with peers of his age, he preferred to hang out with adults. He would have conversations on a variety of subjects, advanced beyond his age. Keeg didn't like toys. He would play with Legos and HotWheels with racetracks. However, the typical toys for his age would only interest him long enough for him to tear them apart and determine how they worked. He had no interest in the way toys were supposed to be played with once he passed abotu 16 months of age. By 2 1/2 years old, Keeg had taught himself to read and was reading Dr. Seuss books. His reading progressed rapidly and in no time he was reading books many adults won't pick up. Keeg showed a special interest in the Bible, math and science. His Bible knowledge is very advanced for his age and one of his favorite things to do is to discuss the Bible with pastors. Keeg was very social as a child and could always determine which person in a crowd was upset or sad. As more and more was discussed, I could clearly see the the signs had always been there.

Keeg has several referrals. He is going to be evaluated by a pediatric immunologist. He has a referral to be evaluated for auditory processing disorders. He'll also be evaluated by an occupational therapist who can help him with the gross motor issues that have recently gotten worse, as well as get him in social skill classes.

As for Keeg, he's not happy. He told me that he doesn't want to have Aspergers. He said that it means people will look at him differently. Although I've always raised my children to believe that "different" is not bad, a dear friend pointed out to me that during teen age years, the desire to fit in and be accepted is very strong. Being diagnosed during those years is bound to be hard for any teen to swallow.

I'm thankful that Keeg was diagnosed after several years of attending Sibshops. Sibshops has helped teach him how to advocate for those with special needs, and I'm hoping he'll be able to apply those lessons to himself. He recently watched Temple Grandin and saw how she advocated for herself despite obstacles. Sibshops has taught that different is not wrong.

Keeg has several strong examples in his life that will help lead him and encourage him during this time. I can't help but look at the advantages that Aspergers will give him. He wants to be a missionary. His extensive knowledge of the Bible is a direct result of his Asperger's. What a wonderful gift God has given him so that he will be well equipped to serve God and teach others of God's unconditional love.

Keeg will still be able to meet his full potential and follow his dreams. The paths may involve more work, but as a dear friend told me last night.................."Doesn't everything in life worth having demand hard work?"

Intro

Keeg is my 14 year old son. This blog will be about his journey. His journey with chronic health problems, severe environmental and food allergies, and suspected Asperger's.

Background info:

Keeg was born full term at 9 and 1/2 pounds and 23 inches long. He had breathing issues at first and it was 45 minutes before the doctors were able to get him breathing well on his own.

At one month old, Keeg turned blue and I rushed him to the ER. Three days later it was determined that he had situs inversus totalis (all his internal organs on on the opposite side of his body) and severe acid reflux with projectile vomiting.

The first 4 years of Keeg's life, he suffered from febrile seizures. He would go from a normal temperature to a temperature upwards of 104 degrees within a few minutes. The fast rising temperature would trigger the seizures.  The highest temperature he had was 106.8

At 4 years of age, I went to wake Keeg one morning only to find that he was completely lethargic. He could not talk, sit up, walk, or even swallow. We went to the ER where he was admitted and numerous tests run, but the doctors could never pinpoint the cause of his severe lethargy nor his constantly changing labs. This scenario has continued to be repeated a couple of times each year. Yet, despite more hospitilizations then I can count over the last 10 years, the cause of his recurring fatigue is unknown.

Keeg suffers from migraines that rage anywhere from several times a month to several times a week. His migraines are severe and he's not responded to any of the typical migraine medications.

About 2 years ago, Keeg started exhibiting other problems. He became consumed with reading, having to read every written word he sees (even the tags in clothing). He started to have difficulty with day to day task and struggled with social interactions. Recently we got a referral to have Keeg evaluated for Asperger's.

Although I'm writing this initial post, I hope that Keeg will be able to use this blog to help others see the world from his eyes. Keeg has a unique perspective and I think the world would be enlightened by hearing it.

Please continue to pray that we find a way to help Keeg with his health issues as they've gotten increasingly worse of late. We are praying for healing for Keeg!

Thank you for following Paths From Keeg's Soul.