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.
Tuesday, December 29, 2009
Saturday, December 19, 2009
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:
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.
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!
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.
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.
Wednesday, November 11, 2009
Speech Therapy for Logan
Logan has had his first session of speech therapy. He loved it! His therapist, Erin, had some pompom balls and cotton balls for him to scoop up and put in a pail with a little shovel. He played at that for about 30 minutes and loved every minute of it. He cried when it was time to put all the cool stuff away. He wasn't as enthralled with the puzzle, or animals for "Old Mac Donald", but enjoyed them as well. He kept trying to open her box as she was ending the session. It was very fun. Brother and Sister thought so too. I had to send them upstairs by threat of death to get them to leave him alone. We see the therapist again tomorrow. Brother will be at his cousin's tomorrow, so hopefully there will be fewer distractions. :-) We are working on the sign for "done" this week. He isn't quite there yet. Our goals are simply that he will be able to communicate, whether it be a nod, head shake, or sign. I am looking forward to tomorrow's session. We will have pictures to add to the blog for that, as well. Mom is not always as quick with the camera as she could be.
We DO have success!
We have had now 3 very successful weeks! Logan has continued to eat everything (except Casein, of course)! He loves food! Sometimes it is like we cannot get enough down him! He has gained a pound and 1/2! This is awesome, since it had been at least 4 months since any weight was gained. He is doing great! Mom, on the other hand is missing her dairy. However, has seen some great benefits as well. She has lost about 5 pounds, and the cravings for sugary foods. YAY!
Subscribe to:
Posts (Atom)





