SICK, SICK, SICK...
The definition of comorbidity taken from the medical dictionary is this: two or more coexisting medical conditions or disease processes that are additional to an initial diagnosis. Our Allie lives with these comorbid conditions:
Chronic urinary tract infections
Immune deficiency (hypogammaglobulinemia)
Developmentally delayed
Developmentally delayed
Thrush
Strep
Nose bleeds
Low muscle tone
Seizures
Headaches
Stomachaches
Allergies
Chronic dark circles under eyes
Chronic dark circles under eyes
Visual, auditory and oral sensory disturbances
Eczema
Anxiety
Aggression
Social awkwardness
Possibly depression?
Sleep issues
Abnormal gait and posture
Diarrhea
OCD
Comorbid conditions listed above are what we live with daily, weekly or monthly. These conditions make Allie not participate in play dates, misses out on events, and school days. Making plans early on in the toddler years was easier. Today, we are conditioned as parents to make "safer" plans. If we do plan something we tend to not tell Allie till the day of. For example, if she has a seizure then we stay home and she sleeps for the entire day she did not know that we were planning a water park day. We don't tell her to protect her feelings. There are a few exceptions. Big plans like an airplane ride we do tell her because seizure or no seizure we will make the flight. She can sleep on an airplane but not at a water park.LABS, LABS, LABS....
Dr. JK an autism specialist, pediatrician, wanted to see what was going on inside of her. Through extensive testing of Allie's
saliva, urine, stool and blood he found a few things:
Urine test called Microbial organic acids test, COLLECTION 11-14-11 sent to the Great Plains Laboratory. This test was an important puzzle piece. Her urine was high in HPHPA Clostirdia, bacterial metabolites. The normal range is <227. Allie's was off the chart, literally, at 2,987. The first round of treatment usually is Vancompycin, Alinia or Flagyl. In the past she was on all three of these for C-Diff. We knew from her past, her behaviors did not improve with this treatment. Allie did, however, respond behaviorally well to the antifungal Fluconizole 100 mg once daily, this is generic for Diflucan. She had more energy, a clear head and less aggression. We cannot have her on fluconizole forever because it is hard on the liver.
Immunoglobulin blood test DRAWN 11-14-11 - measures the level of immunoglobulins (or antibodies) in her blood. The immune system fights off bacteria, viruses, toxins ect. when we are sick. We found after Dr. JK did this blood test she was IgA, IgG, and IgM deficient. The technical term is hypogammaglobulinemia. Here are her results:
Her IgA was 15, normal range is 35-200.
Her IgG was 372, normal range is 750-1,550.
Her IgM was 40, normal range is 45-250.
IgG antibodies are fond in body fluids that protects against bacterial and viral infections. Which explains her strep infections.
IgM antibodies fight a new infection and are located in the lymph fluid. She does well in this area, her level was on the high/low end.
We made an appointment right away with the best immunologist closest to us in Minnesota. His name is Dr. Mark Schleiss at the U of MN. He was not too concerned! Basically after a 2 hour appointment with him he told us she just is not sick enough for treatment. I understand this doctor see's the sickest kids there is, that is sad. What about my kid? I felt like he was comparing us to so many other kids. After a few months, his fellow, Dr. Hannish did say she has this immune defiency due to her Depakote and Lamictal. The neurologist, does not want to D/C these meds because she would have more seizures if we did D/C those meds. A Catch 22. Dr. Hannish did say she could be prescribed IVIG therapy.
Possible treatment option- IVIG or SCIG - Intravenous & subcutaneous immune globulin therapy. This therapy contains the immune globulins or antibodies that protect us against infectious agents. The doctor is guessing that a once a month injection would benefit Allie. This is a fix only that lasts 30 days is what I understand. This treatment would be for the rest of her life. We are looking more closely at this treatment to see if it will be right for Allie.
In Allie's IEP, Individual education plan, at the school has a special request to have the paraprofessional watch Allie wash her hands with soap and water every 2 hours during the school day. We have good reason for this...she has a broken immune system.
Micronutrient Analysis (WBC) DRAWN 2-28-12, Spectracell Laboratories, ordered by Dr. JK, determined the following deficiencies:
Vitamin B2, Vitamin B12, Folate, Vitamin C, Pantothenate, Choline, Fructose senstativity and Immnidex.
Age 8 1/2 this simple blood test was done. Allie was deficient in all of these items. Why didn't I push for this simple blood test at age 2? Why didn't the pediatrician think out of the box? This is the recommendations for her supplements:
- Vitamin B2 25 mg daily.
- Vitamin B12 500 mg daily (methylcobalamin or adenosylcobalamin).
- Folate 800 mg daily.
- Pantothenate 500 mcg daily.
- Choline three options: 500 mg bid from Choline Bitartrate, Citrate or Chloride salts. 4,000 mg daily of phosphatidyl Choline. Or 2 tbsp Lecithin daily.
- Frutcose sensitivity to avoid concentrated sweet foods with table sugar, sucrose, corn syrup, fruit juice concentrates, fructose, and foods rich in these ingredients. Whole fresh fruits are acceptable.
- Vitamin C 250 mg daily
- Immunidex is an evaluation of the patients T-lymphocyte's response to mitogen stimulation. Low responses may be related to the patients levels of stress, nutritional deficiencies, or pathology, Improvement in the patients Immunidex may be facilitated by correction of the functional deficiencies reported in this analysis. - Spectracell Laboratories, SpectaCell Data Services.
These files have all of Allie's past documents for her medical needs.
My thoughts:
The word autism is an easier term describing my daughters overall condition. We want to fix the above problems. When I hear autism, I think, okay what is the root of the problem? Autism is a huge umbrella and my kid is under that label. What if medically we can treat her and some of these conditions will dissolve?
