Test Results Are In & Updates

The last couple weeks have been full of ups and downs for our family. Annabelle is reaching every day to meet new goals with all this new energy her little body has. She tires easily still, but she is improving with every day to keep up with other kids her age. She is running, playing, laughing and learning the world all around her. She amazes me.

The pool is her new favorite place to be. She's becoming a fish and going underwater is her mission, whether that be to jump in and then you catch her once she's gone under, or for her to dunk her head herself and come up laughing. She loves the water. She loves the pool.

As much as she loves the water and pool though, the pool and water is just another aspect of 'Annabelle' that our family has had to learn. Her body temperature has done much better over the last several months, being able to balance itself, but she does still have trouble warming back up once she's been cold.. and vice-versa. That simply means, if the sun is going down and temperature is dropping, our time in the pool must end before the shivering chin begins.. otherwise it will become a battle. If the pool is too cold, Annabelle cannot get in. However - as hot as it's been the last several weeks in VA, this hasn't possed too much of an issue and we've been able to easily alleviate all Annabelle's temperature unbalances. The water is another adventure: kiddos drink water when they're learning to hold their breath from going underwater. If I had my choice, I wouldn't allow Annabelle to constantly go under, but Annabelle has other ideas - and she's stubborn as a mule most times. She is learning very very well how to hold her breath and blow out water every time she surfaces. She's doing an amazing job! If/when she drinks water though, once the water gets into her tummy, it begins to cause her to cough/vomit. But Annabelle cannot vomit, thus resulting into a painful, choughing/retching/spasm of crying until we can hook her extension & a 60cc syringe to drain all the water/liquid off her stomach to provide her relief. We are very clear with Annabelle and remind her each time this happens, that she cannot, CANNOT drink or swallow the water or it will hurt her tummy. She's learned to hold her breath near perfectly in the last couple weeks, so fingers crossed we don't have many more of those instances in the near future.

Her eating is going slow. Most days she eats very, very little, and the food she does eat, provides very little nutritional value. The things she wants to eat most, always happen to be everything that is unsafe in her diet. She asks for chicken almost daily. She asks to eat bread / toast / cereal almost every meal and we have to break her little heart and tell her no. 

Her diet right now consists of:

• Fruits
• Veggies
• Popcorn chips
• Dehydrated fruits / veggies
• Potato
• Tomato soup
• Grits

We are blessed for all that our diet allows right now. It may seem limited to many, but this is a HUGE diet to most kids with Annabelle's disease. To say we are grateful, is an understatement. That being said, our prayers are focused to maintain this diet and not loose any foods from another failed EoE report. Keeping all these foods in her diet was a plea on our part with our GI, the usual protocol is to remove all foods , treat the Eosinophilic Esophaghitis flare and then begin trialing foods again. We choose to keep our foods and only eliminate portions of her diet and pray it provides the changes we need. Fingers crossed!

How is she feeling?

Annabelle seems to be doing 'alright'. Without a doubt, her quality of life is better than it's ever been. She smiles, laughs, picks on her sister and gives us a run for our money more often than we care to admit. So I assume that means she is feeling better than ever.

Her sleep is extremely erratic. She wakes multiple times a night crying. She wakes in the morning and says her tummy hurts, throat hurts, butt hurts, anything. She cries and cries many times but cannot tell us WHAT hurts. She seems to becoming more uncomfortable in her body again. I could be wrong, and I do hope that I am, but AK and my experience with our daughter is usually gauged pretty clearly. She is drinking a LOT. Her diapers/bowels are well lately but something internally is off.

Saturday afternoon while driving down the road, Annabelle began to cough. The sound was like a dagger cutting into our hearts to AK and I - he looked at me and I didn't look back at him. She coughed again and I finally looked up with tear-filled eyes, she said the terrible words "That sounds like EoE".... I whispered back "I know.." For the last several days, she has woken and spent her mornings coughing and choking. We pray its only a simple cold/virus, but we're nervous. An EoE parent knows the cough like no other - we pray to never have to hear that cough and we can identify it from 1,000 others. It sucks. It's the sound of pain, torture and upcoming heartache, barking from your childs airways. It's the sound that finds me in my nightmares. I hate EoE. I hate Eosinophilic Esophaghitis.

Annabelle's feeds have been delivered lately most as bolus feeds vs feeding pump. This means instead of hooking her tubing up to her feeding pump & IV pole, that we hook a 60cc syringe to her tubing and dump the formula in as fast as it will feed into her belly. (A couple minutes vs hour and half). She has done wonderful with bolus feeds until the last week or two. Lately we haven't been able to deliver more than 2oz of a feed without her retching / trying to vomit. Therefore, she's gone back to the feeding pump for most of her feeds. She isn't happy much at all about this. She hates being hooked up to the pump and IV pole, she's confined and restricted for most hours in the day. I'm not sure why the sudden change of what her tummy can handle vs now, but we are making due with the resources we have and will continue to deliver her feeds in the safest manner we know possible. It unfortunately just comes with the sacrifice of being able to live and play as a 2yo should be able to do :( 

Test Results Are In 

As I've shared before in previous posts, we have met and are working with a wonderful - highly skilled, knowledgeable, passionate and honest doctor who was willing to take on Annabelle's case at the request of her current doctors. Words cannot explain the relief I feel to have questions answered and my daughters care being taken seriously and examined by someone who genuinely wants to help a little girl that deserves the best chance in this world. Our initial meeting involved scans and several series of labs. Below I am sharing a high level of the clinical findings and what they mean in Annabelle's little body. Keeping in mind, this is not a diagnosis, these are only the findings of what the scans and labwork are reporting. Our doctors are commited to finding the root cause(s) and best treatment plans for Annabelle and determine what our steps will be next, given the information we have below and Belle's complex history so far. 

Preliminary Scan Readings Only (Below is a compiled list of the largest stressors in Annabelle's body at the time of the scan)

Thyroid

Highest stressed organ, treated at birth. Suspectly caused by a potential autoimmune response in her mother, as well as deficiency in core nutrition for thyroid function. Testing of mother is required for thyroid function and possible autoimmune (T2 immune) function.

Arteries / Veins

The lack of antioxidants leads to foreign protein and too much hydrogen peroxide in the body.

Pituitary

Auto immune activity is impacted by the Hypothalamus/Pituitary/ Adrenal Axis. Lack of core nutrition also impacts auto immune activity. Dietary changes are requested during and after treatment.

Large Intestine

Leaky gut was noted in the DBCA sample and identified as a stressed organ. When digestion is interrupted, food leaves the stomach in an undigested state.

Thymus

Although the thymus is important for children, it is also an organ for both the T1 & T2 immune response. Stress indicates more than childhood growing and possible autoimmune response activity.

Skin

Skin is the third kidney, as well as directly impacted by the large intestine. Hydration and urine pH (waiting for results) is suspected to be acidic with a normal consequence of uric acid...inflammation in the large intestine can also cause skin issues.

Pancreas

Pancreas can be stressed when the pathway of digestion is interrupted. By not activating the enzymes in the saliva for chewing food, the pancreas can be stressed in the ability to digest food and provide insulin for sugar metabolism. Stomach tube is directly impacting this pathway.

Lab / Bloodwork & Scan Results 

Skin

Sensitive skin and skin ring are impacted by kidney (hydration), acidity and health/absorbability of large intestine. Chemical build up causes the liver not to filter properly.

Leaky Gut

Mal-absorption is noted, also supported by periods of lethargy, can be caused by poor nutritional usage of Magnesium. Yeast buds were noted in most of the DBCA smear.

Immune System Inflammation

Immune response from spleen, lymph, liver & thymus. Several organs indicate a stressed system and weak functioning of the body’s immune system.

Endocrine / Thyroid Ovalycytes

Hypo functioning of the system is noted. The endocrine sign indicates the Hypothalamus/Pituitary/Adrenal Axis is involved. Under functioning thyroid was observed along with Ovalocyte that can indicate poor hormone function.

Liver

Congestion in the filtration functioning of the liver, the scan indicates a potential exposure/infection (suspect sub clinical) to Hepatitis A & B as well as many medications that are suspected as being administered while in hospital before/after birth. The body’s indication of these prescriptions still impacting her body indicates an under functioning liver.

Chemical Build-up

A build up of chemicals was noted in most blots, as well as stressors noted in the scan. Chemical build up impacts all systems functioning, including mal-absorption.

Sodium

A potential sodium deficiency sign was noted in a blot, supported by scan of the coccyx being stressed (the point sodium is stored in the body), this is very important for many functions including thyroid, hydration and digestion.

Immature White Blood Cells

Based upon several other signs, an imbalanced T1 & T2 immune response, leaning toward T2 (allergies, inflammation, potential for autoimmune response function) is noted.

Anisocytosis Ovalcytes

Missing core B vitamin absorption for evenly sized and shaped blood cells. (B9, B12 & Iron)

Mild Dacrocyte & Bacterial Infection

Bacteria (mostly rod forms) within the blood cell were noted but not counted. Several forms of white blood cells were identified.

Undigested Food

Poor absorption of food and indications of leaky gut were seen as suspected undigested food particles were seen in smear.

Uric Acid

Uric acid crystals were seen in smear which indicates an insufficient enzyme activity for food, as well as indicating an acidic state and lack of HCl from insufficient sodium/salt in diet.

Magnesium at high doses can create an excess in the body which commonly causes lethargy in the muscles and should cause very loose stools. Annabelle was exposed to a birth trauma by a high dose of magnesium, which I believe caused a nutritional “allergy” of magnesium. This early exposure to magnesium in excess has caused the body’s programming on how to use magnesium correctly to be disrupted. This reaction can be very common with people that have been exposed to heavy metals.

Upcoming On Our Schedules

Our follow-up steps are to meet with our doctors and determine the best treatment plan for Annabelle. We have adjusted her diet and are adding several necessary vitamins / medications that are necessary. I (her mommy), am scheduled to have several labs and testing performed on myself to alleviate additional testing on Annabelle. I have asked to have AK and myself tested for anything our doctors feel may be beneficial to helping us find answers. I would prefer to not subject Annabelle to more and more testing / needles / pricks / hospital stays / appointments than she absolutely needs. The ability to have tests performed on anyone beside Annabelle, I know is not always possible, but if that can avoid one more painful / traumatic procedure for her - than it's priceless.

Our next follow-up appointment is scheduled for this week. We will visit our GI and discuss both these results, tests moving forward and also follow-up from Annabelle's last Upper Endoscopy / Biopsy's. We unfortunately suspect possible EoE activity, and I am praying our doctor this week can visibly see signs to assure us Annabelle is better and not worse than she was in March/April.

Prayers for this tough little girl are always welcomed and appreciated. With every bite of a meal, run across the lawn, belly laugh and daydream for your family/children, please keep amazing little ones like Annabelle in your thoughts as well and pray for all the same joys in life for these children that they too may enjoy them one day.