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.

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!

Delicious Smoothie for Little Noggin's

Success?!  (We hope).  Dr. Morgan provided us with a little recipe jam packed with some awesome "brain fats"!
6 oz Coconut Milk
2 oz water
1 scoop NutraCare
2 tbs Coconut Oil
1/2 avocado
1/4 cup Blueberries
1/4 cup sliced almonds

It was a new taste for him so Logan was a little unsure.  The recipe is very thick so we needed to thin it down a bit with additional water.  After a few "taste sips", Logan began to accept more and more.  I think we've found something that can really help!
Additionally, Logan's appetite has increased this week.  He's been mouthing (and even swallowing) a number of foods.  He loved his grilled steak and mashed potatoes last night!  I hope we've turned a corner!

The Dietary Plan

Amidst all of the professionals and tests Logan has done, not many have discussed the need for Logan's Parents to step up or modify his diet. Some have recommended eliminating certain foods from his and Mom's diet. Dr. Montes has prescribed a high-end, hypoallergenic formula for Logan at $193.00 a can called "Elecare". Our insurance will cover much of this cost, but guess what the first ingredient is in this formula...Corn Syrup Solids!! What?!! High Fructose Corn Syrup is toxic and has been linked to over consumption related obesity, certain types of cancers and even has measurable amounts of mercury depending on the process used to create it. I could be very wrong here but why do I want to feed my brain-starved son a food product that is comprised of 45% corn syrup solids? This can't be good....

We've decided to try another diet instead of the Elecare. Dr. Morgan has recommended a product by Metagenic called "Ultracare for Kids". Ultracare is also a hypoallergenic medical food. Compared side by side, the EleCare contains more amino-acids, something Logan needs. But there are none of the "nasties" in the Ultracare. The price is considerable less (only $37 a can) and we will be mixing in other whole foods to supply the fats and amino acids Logan needs.

God has also created a few plants that have some amazing properties to sooth and health acid reflux. Slippery Elm and Aloe Vera have been proven to be effective in this area. So, in addition to the Ultracare, we'll be adding these two medicinal plants to Logan's diet. Now, the only question I have is, "How do you get a child who won't eat or drink anything to suck down a few ounces of slimy aloe vera and slippery elm tea...?" : )

Tummy Bug Testing

As Logan's mom indicated below, we had a wonderful visit with Dr. Joel Morgan yesterday. He gave us a lot of information and answers. We still have a lot of unanswered questions and some major anxieties about our Little Logan but we feel like we are moving in the right direction.
Dr. Morgan really feels that Logan's "failure to thrive" is all related to his inability to eat and utilize the little food he does get down. We have a few additional tests we will now go through to look for more answers. Dr. Montes' assessment of Logan's GI tract indicated inflammation in the cells of his colon (see Another Piece of the Puzzle below). Dr. Montes suggested we obtain a skin prick test to try to isolate the allergens affecting Logan. However, the blood tests we have already run and this newly recommended skin test look at IgE allergic reactions. These types of reactions are caused by Immunoglobulin E (hence the name) antibodies. Since the blood tests were negative, the skin test (also testing for IgE reactions) most likely not add any additional information.
Sometimes, food allergies and sensitivities are demonstrated through a delayed or secondary immune response by the Immunoglobulin G antibody. The traditional blood and skin tests only look at IgE reaction. So, our next step is to submit an IgG blood test and have it looked at for any reactions.
Another question we want to solve is, "How is Logan's GI tract functioning?" The tests performed by Dr. Montes looked at the gross anatomy of his tract, looking for any major defects or disease processes. Thankfully, those tests revealed nothing more serious than some reflux and inflammation. Now we turn to look to see if there is anything inhibiting him from absorbing or digesting key nutrients and fats.
We are submitting three tests on Logan's stool. The first is a microbiology analysis that will identify the types and quantity of his tummy bugs and look for any fungal presence. An imbalance or absence of key bacteria will throw off Logan's ability to utilize certain foods. We will also be looking for two inflammation markers, "calprotectin" and "lactoferrin". Calprotectin is a calcium and zinc binding protein and has bacteriostatic properties. Lactoferrin has antimicrobial properties and raised levels of these two proteins will help us in determining the extent and cause of inflammation in Logan's bowel.

New Hope

Yesterday, Oct. 5th, we took Logan to see Dr. Morgan, a pediatric Naturopath. We were very pleased with what we were told. After spending about an hour and a half with Dr. Morgan, we walked away with a better knowledge of what everything meant. Now, knowing that Doctors are not God and still don't know everything, we will still wait and see what happens with the new treatment regiment. BUT, Dr. Morgan has been pretty dead on all along. We learned that the elevation of the carnitines and other areas in his blood could be typical of his inability to eat and utilize his food, and even his lack of white matter, which is mostly composed of fatty acid, could be related to his inability to eat normally. See, if his body is not getting or being able to process the fats, his body will scavenge what it needs from wherever he can get it, his brain in this scenario. If you aren't getting what you need nutritionally, your blood will show it. Imagine that? :-) Anyway, I will not attempt to explain everything that he did, just simply state that we will be feeding him more nutrition, more fatty acids, and giving him herbs that will coat and help heal the esophogus as well as diminish the inflamation in his intestine. He also wants more specific allergy testing, this particular test being able to tell us the reactivity level of the allergen, and some stool testing. Logan's Dad and I walked away feeling a lot lighter, even in the pocketbook, and understanding a lot more. I am ever greatful for the Spirit that testifies of truth wherever it lies. We are hopeful, I think I can speak for Logan's Dad, but he will for sure be speaking for himself, soon, that we are going to find a way to manage and get past this. The Lord is so merciful. We would be amiss if we didn't acknowledge His hand in our lives through great friends and people. We are so greatful!

Another Piece of the Puzzle - Biopsy Results In

Dr. Montes called today with the biopsy results.  It appears that there is inflammation in the cells taken from the colon.  The inflammation seen is common with types of food allergies.  The two biggest problems are dairy and egg.  So, as of today, no dairy or egg for both Mom and Logan.  This helps explain some of the food aversion he has.  Why eat if it makes you feel horrible?
Dr. Montes is recommending we have a pediatric allergist conduct a skin prick test to help isolate his biggest allergens.  We will need to go through his pediatrician, Dr. Matsumoto, for this.   Additionally, he recommends that we move him over to a perscription hypoallergenic formula.  I'll be picking up some samples from his office today to see which one Logan will tolerate.  He gave us a link (www.foodallergy.com) for a complete list of foods we need to avoid until he has further testing.  Fun!!  : )  We'll have a follow-up with Dr. Montes in 2 months to evaluate how he is doing.

Bottoms Up!!

At 9:00 am today, Logan had his upper endoscopy and sigmoidoscopy.  The procedure itself went very smoothly.  We love Dr. Montes and once again, the staff at Banner Desert were great to work with!  The most difficult part of today was watching Mom holding Logan still as the nurses administered his anesthesia.  The 20 minute procedure revealed that Logan has some acid reflux , something we were almost sure he had since birth.

While scoping our son's GI track, Dr. Montes took several biopsies.  The biopsies will help determine if there are any abnormalities on the cellular level.  He will also be looking for any food allergies that might be agrevating the tissues.   We should hear the results from Dr. Montes later next week.

Logan received a small dose of Demerol to help smooth out his recovery this morning.  You thought messing with drunk people was fun!  Try playing with a slightly impaired toddler!  : )  After Logan was discharged, Mom and Dad grabbed a quick bite to eat at Mangoes (on Main Street in Mesa, one of our favorite Mexican restaurants).  Logan was simply fascinated with the ceiling fans.  Hhmmm, I wonder what ceiling fans look like when you're on Demerol? Other than being a little tired and grumpy, Logan has done very well and we're all looking forward to restful night.

Tender Mercies

From before we were even pregnant, I began to notice the tender mercies of the Lord with this choice spirit. I began to have dreams that when I was asked how many children I had, I would always say I was the "mother of 5". For several days, I dreamt similar things over and over. I even felt that "cradling" of the bed on my abdomen that you normally feel as the baby gets bigger, even before I knew I was pregnant.
Then, finding out Logan was breech, and having an external version performed to turn him, we were again blessed with the ease of the procedure and Logan's adaptation to his new position. Being a slightly risky procedure, we counseled with the Lord about it. We were filled with peace.
As we have struggled with the issues Logan has had, essentially from birth, I have felt over and over the Lord's comforting hand. Both in and out of the temple, I have had the whisperings of the Spirit testify to me that Logan is as the Lord would have him be, everything would be fine with him, and the blessings of the temple do extend to our families.
As we prepared for Logan's MRI, and again, he could only have clear fluids after midnight, and nothing after 4:30 am, Logan refused to drink anything for 14 hours. Yet, his happy nature never waivered. He was smiling and content and happy. What a blessing this sweet boy is to us.
Last Friday, we met with Az Early Intervention. Again, the frustrations we felt with originally being denied speech and feeding services were turned into a blessing. Because we had already seen and been evaluated by a speech therapist, yet had the insurance deny it, we automatically qualified for services. We also qualify for services through DDD, which allow us to have therapy past the age of 3. It also allows us to have music therapy (Logan is a huge fan of Jazz). Mom is thrilled!
And then, yesterday, at approximately 4:30 pm, we were blessed with yet one more tender mercy from the Lord. We have been so concerned about Logan drinking clear fluids so he can take the Miralax and have the test done without being admitted to the hospital. Well, yesterday, I had to call the Dr. and inform him that clear fluids were still a no-go with Logan. I spoke to Dr. Montes's nurse. After speaking with Dr. Montes, she called back and informed me that they would NOT have to admit him, nor do the naso-gastric tube, nor IV,etc... We have been permitted to keep him on breast milk and as much clear liquid as he will tolerate and use suppositories instead of the Miralax. I began to cry, and then remembering I had just put make up on to go to pack night, sucked it up. :-) What a blessing! We have felt such a load lift and such a peace come over us. I know that the Lord has seen fit to bless us yet one more time in this endeavor. How we ever became worthy of such love and acknowledgement, I will not know. I do know that the scriptures say that "God loves those who love Him." And we love Him. If this has left us worthy of his mercy, than I consider myself extremely blessed to be in His hands.

Blood Work Results

Also on 10 September 2009, we received the final results from Logan's metabolic screens.  There are some abnormalities present but not enough information to lead Dr. Sweetman to any specific disorders.  I will post the results here but I can't tell you what it all means yet.  We're still piecing this one together.
The results that came back abmormal are:
Test                                                 Value (Ref Range)
Adipoylcarmitine, C6DC                       0.02   (< 0.02)
OH-Dodecanoylcarnitine, C12OH          0.02   (< 0.02)
OH-Tetradecenoylcarnitine, C14:1-OH  0.02   (< 0.02)
OH-Hexadecenoylcarnitine, C16:1-OH  0.02   (< 0.02)
Methylmalonylcarnitine, C4DC             0.04   (< 0.02)
OH-Butyrylcarnitine, C4OH                 0.11   (< 0.05)

Elevated 3-Hydroxybutyrylcarnitine (C4-OH) can be seen in short-chain 3-hydroxyaicyl-CoA dehydrogenase (SCHAD) deficiency and in ketosis.
Elevated C4DC may be found in vitamin B12 deficiency, cobalamin defects, and methylmalonic acidemias.  However, the level of C3 is with in the normal range.

Our next step is to have an upper GI with biopsies performed on his esophagus, stomach and duodenum.  We will be looking for any abnormities in these organs that might be contributing to his syndrome.  To perform this test, Logan has to have nothing but clear liquids for a full 24 hours prior to the test.  This is a huge challenge because he does not eat or drink most foods.  He likes butter (see picture to the right) but that's not a clear liquid.  He won't tolerate water or juices.  He must drink a certain amount and take down a drug that will prepare and clean his GI track.  If he does not cooperate, we will need to hospitalize him the day before, set IV's and perform a gastric lavage.  The upper GI is scheduled for 25 September 2009.

In October, we will have a neuro-genetisist consult.  They will evaluate where he is, order another round of very expensive and specific tests and write up a program we can begin to follow to assist his brain development.  We are hoping we can get in with this group in October as they only take on new cases once a month.

More Information - Grave Concerns

On 10 September 2009, we had our follow-up visit with Dr. Sweetman. We quickly learned that things are not as good as we had hoped. After consulting with another specialist, Dr. Sweetman believes that while Logan's brain is normal, in that anatomically everything is in place, it is the brain of a 6-9 month old, not a 14 month old. Logan's brain is not developing as it should.

Worse case scenario: As Logan continues to grow, his brain will lag further and further behind and he will be severely developmentally delayed. Best case scenario: We can figure out why his brain is doing what it is doing, reverse or modify the course it is on and he might get away with a few learning disabilities. Dr. Sweetman is optimistic that he will do well. He is very social and is reaching developmental mile stones, just later than we would like.

Faith, Fasting and Priesthood - A Special Blessing to Our Family

On 30 August 2009 we invited family and a few friends to join with us in fasting for our Logan.  Following the fast, we wanted to seek a Priesthood blessing.  As Carrie and I talked about this, we knew we wanted to petition the Lord to heal our son.  We had the faith that He could.  We've witnessed miracles before in our own lives and in the scriptures.  We knew that the Lord who created his little body, could heal whatever was wrong.  We had to ask.

Following our day of fasting, we asked Malin Lewis, our Stake President to assist us with the blessing.  President Lewis anointed and I sealed and blessed.  As hard as I tried, I was not allowed to pronounce a healing blessing.  A restraining hand simply said, "No."  Immediately following the "no", an overwhelming feeling of peace settled over me and I knew that this was the way he was supposed to be.  Logan would have challenges but he would be alright.  He is to be a special blessing to our family.

Magnetic Resonance Imaging - Good News!

Since closed sutures are not the cause of Logan's slowing head growth, our next step was to look at his brain to ensure that everything is developing as it should.  So, on 20 August 2009, we headed back to Banner Desert for an MRI.  This test is a little more involved than taking a few skull x-rays and our 14 month old would have to remain perfectly still for over 40 minutes.  To do this, he would need to go under anesthesia. While under anesthesia, the nurses took several blood samples to begin much of the metabolic testing to rule out any underlying disorders.
The MRI techs at Banner Desert were wonderful.  Logan did great with his anesthesia and a worried Mom and Dad had their little boy back within an hour. 

A couple of days later, Dr. Sweetman called.  The preliminary report from the hospital was that everything looks normal.  However, she felt that there were some areas that appeared somewhat underdeveloped and she wanted to consult with a pediatric radiologist before she made her final report.  Additionally, some of the preliminary blood tests are coming back normal.  Great!  This is good news!  Structurally, the brain is doing what it is supposed to do and things are looking well metabolically.  Perhaps this is just a GI issue?

A New Pediatrician - Concerns Finally Addressed

    Meeting Dr. Matsumoto was a welcomed breath of fresh air. She too was very concerned about Logan's failure to thrive. We no longer needed to try to "convince" the doctor that something was not right. She felt we needed to address of our concerns aggressively and diagnosed Logan with "microcephaly". Mom and Dad knew something was not right but we had no idea it was potentially this serious.

    In essence, microcephaly describes the syndrome that has many possible causes. His head may not be growing because 1 – his cranial sutures have fused, not allowing the brain to expand and develop as needed, or 2 – his brain is not developing and growing as it should therefore not expanding at a normal rate, or 3 – there are metabolic and/or gastric disorders that are delaying his growth or 4 – there are genetic disorders causing the problem.
   

    Our first step was to have skull x-rays taken to ensure Logan's cranial sutures were open and had not fused yet. I'm unsure if any of you have had the pleasure of trying to hold still a wiggly 13 month old so a rather slow x-ray tech can snap about 8 films of your baby's melon. Oh, keep in mind that the head must remain perfectly still and at just the right angle... After about 30 minutes and a clingy baby deathly afraid of an x-ray table, we got the shots we needed and everything looked good and open, ruling out cause #1 above.

Concerns Noted

    From very early on, Mom and Dad felt that something was not the way it should be. We began to notice small things that weren't exactly right. Having four older siblings has taught Mom and Dad a little about what to expect with this little ones.

    Logan had some difficulty figuring out the whole nursing thing. He never had a strong suckle and would never take a "binky". After feedings, he would frequently vomit. Mom did what she could to modify her diet to ease the upset to his little tummy.
   

    Then, in early 2009, Logan's growth rate began to fall below his growth curve. Most concerning was that his head circumference was not even keeping pace with his falling weight curve.
    After being ignored about our increasing concern for our son, we decided to change pediatricians and attempt to find more answers about what was going on.

Logan's Birth

Mother's Day 11 May 2008

   At 11:45p our little miracle took his first breath.  Weighing in at a whopping 10 pounds 8 ounces Logan Enoch made his screaming entry into our family and hearts. 

   With fat rolls everywhere, his older sister Jessalyn declared he looked like a Shar Pei puppy!  His face was so chubby that when he would cry, his eyes would totally disappear and a little "fat knob" would appear right between his eyes above his nose.

   After an uneventful night's stay at the hospital, we took our little ball of chub home.