Good News - Bad News

Good News - We ruled out another potential cause of Logan's microcephaly!  We completed his CT scan on 29 December.  Dr. Sweetman (Logan's neurologist) called last night to tell us that the CT scan came back normal.  We were looking for any small calcium deposits that would have been left by any viral infection he may have contracted while growing inside Mommy's tummy during gestation.  This leaves only two options left, 1 - he has some genetic/chromosomal disorder or 2 - this is all GI and nutrition related.  We are leaning very heavily towards the latter.

Bad News - Logan had his monthly weight check with Dr. Montes (gastroenterologist) also on the 29th.  Logan only gained 8 ounces this last month with no changes in head circumference in 30 days.  We need to be seeing much more growth than this and his GI doc is very concerned.

The plan is to complete his IgE Skin Prick test as soon as possible to rule out any additional allergies that could be inflaming his gut so badly.  We are continuing the therapies recommended by Dr. Morgan (naturopath) and will retest the lactoferrin, calprotectin and stool culture the week of January 18th. Additionally, we are doing all we can to increase Logan's intake of calories, carbohydrates, fats/oils and proteins.  We are hoping that we can get a few more ounces on him for his next weight check.

Overall, Logan is still doing very, very well.  He is very active, happy and social.  He continues to meet developmental mile stones and is improving in his verbal (and hand sign) communication skills.  His appetite appears to be growing and he is self-feeding a variety of foods more often.  There has been no noted regression in any of his obtained developmental milestones thus far.  What a blessing!!

IgG Test Results In

    We received the IgG blood test results today.  We have not had time to talk to Dr. Morgan about these yet but everything looks really good.  Logan is showing no sensitivity to eggs or milk. 

Follow-up with the Witch Doctor

; )  I use the term "Witch Doctor" with only the kindest intentions.  We LOVE Dr. Morgan!!!  We had a follow-up with him on December 17th.  He had many of the test results back and boy, is there a lot going on with Logan.
     First, we tested Logan's stool for lactoferrin and calprotectin.  Both are markers for bowel inflammation.  Both came back very high.  Lactoferrin = 304.68 ug/ml (0.00-7.24)    Calprotectin = 156 ug/g (<=120)
     Second, we cultured Logan's tummy bugs to see what was growing in his gut.  The results are not good at all:
Beneficial Bacteria:
     Lactobacillus = No Growth
     Escherichia coli = 4+
     Bifidobacterium = 4+
Additional Bacteria
     alpha haemolytic Streptococcus = 4+
     gamma haemolytic Streptococcus = 4+
     Bacillus species = 1+
Potential Pathogens
     Citrobacter amalonaticus = 4+
     Citrobacter freundii = 4+
     Klebsiella oxytoca = 4+
     Citrobacter farmeri = 4+
Mycology (fungus/yeast)
     Rhodotorula species = 1+

     The absence or excessive growth of the good bacteria and the over abundance of the pathogens is very concerning.  Without the right balance of bacteria flora, Logan's ability to produce and absorb various vitamins and lipids is severely diminished.

     It is apparent that Logan's bowel is still very much inflamed.  This could be the cause of the bacteria imbalance or the imbalance could be the cause of the inflammation.  It is difficult to tease these two apart.  We are still awaiting the results of his IgG blood test that will show allergies to various foods and environmental agents.  If he does (and we are assuming he does) have allergies, this would cause the inflammation which would upset his gut flora.  

As we wait for his IgG results, Dr. Morgan recommended the following treatment plan:

• Continue the slippery elm tea as needed to help calm acid reflux
• Increase the Aloe Vera juice to 1 tsp 2 x day.  We will reassess the affects and possibly increase to 3 x day if this does not cause diarrhea.
• Continue the cod liver oil
• Increase the probiotic, Therbiotic Infant, to 1/4 tsp 2 x day
• Modify his herbal tincture to include plant tannins, uva-ursi, and undecylenic acid which have all inhibitory effect on the pathogens and yeast.

After 4 weeks of this treatment, we will re-culture the stool and re-test the inflammation markers to see if we are making any headway.  
   

Follow-up with the Brain Doc

On December 1st, Logan had a follow-up appointment with his Neurologist, Dr. Sweetman.  She agreed with the findings and tests requested by his Neurogenetisist group.  She remains positive that Logan will continue to develop.  He continues to acquire new skills and is still very social.  Her office contacted our insurance and was told that PacifiCare would cover the cost of the Chromosomal Microarray.  Great news!

Follow-up with the Tummy Doc

     On November 23rd, Logan visited again with his gastroenterologist, Dr. Montes.  Dr. Montes was not too pleased with Logan's weight gain and bowel function.  Assuming that there is still an allergy component to all of this, he eliminated egg from Logan's (and Mommy's) diet.  He also recommended that we go back to the EleCare and the NutraCare had not been clinically tested for allergen caused colitis.
     A no casein (milk protein), no egg diet is a tough diet to follow!  Especially when the little bugger loves cheese, cottage cheese and scrambled eggs! 

Pediatric Neurogenetics

     On November 11th, we had the pleasure of meeting with Dr. R. Stephen Amato (Genetisist) and Vinodh Narayanan (Neurologist) practicing out of the Children's Health Center at St. Joseph's Hospital.  They reviewed Logan's case, looking at every test and work-up he has had since birth.  They evaluated him and spent about 1 1/2 hours with us, asking questions and observing how Logan interacted and played with us and them.  When all was said and done, they agreed with the basic diagnosis that Logan does indeed, have microcephaly but they were not sure of the cause.
     The team recommended that we run two more tests.  One is a Chromosomal Microarray that will look at Logan's genetic make-up and identify any abnormalities with his genes that could be contributing or causing his slow head growth.  This test is very new and very expensive, about $1500.00 to run.
     The second test would be a CAT scan.  Sometimes, when mom is pregnant, a particular virus will infect the growing fetus and attack the developing brain tissue.  Mom rarely knows she is sick or simply has a mild cold.  The virus leaves small calcium deposits in the brain tissue of the baby that can be seen in the CAT scan.  They do not show up well in an MRI. Often, this same virus will also damage the retina which can be seen by an ophthalmologist.  Luckily, the CAT scan is a much easier test and Logan will not need to be put under general anesthesia again for it.
     While both of these tests will give a definitive diagnosis, there is no real treatment for either one.  We were glad to hear that we are "doing everything right" and Logan did gain another pound and added 1/2 centimeter to his head circumference.