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Lots of symptoms, no answers!

A Cry for Help!

We feel blessed for the additional resources that online information has provided as we consult medical professionals, read reports and books in an effort to determine causes for symptoms that our daughter is exhibiting. In the spirit of the open communication and sharing of ideas and information online, we kindly ask that anyone who might be able to shed some light on the issues we are dealing with kindly read our story and either refer our situation to someone qualified, or share with us any information that might help us in strategizing a plan to resolve our issues.

Background:
Our daughter is 4 years old. She was delivered by C Section and scored 9 on the Apgar scale and suffered from jaundice her first 3 days, but it resolved after breastfeeding and did not require any intervention. After early struggles with breastfeeding during the first few weeks (during which time our daughter was supplemented with formula) mom and daughter got into a regular schedule that included healthy weight gain for our daughter and continued regular breastfeeding until she was just over 2.5 years.
Around 2 months old, our daughter seemed to suffer from gas on and off. She would sometimes squirm while breastfeeding, like trying to stretch out to relieve gas pains. In response, we gave our daughter the infant dose of Biogaia probiotics for a month. We didn’t see any improvement with her gas discomfort using the Biogaia so we discontinued and eventually the gas resolved itself in a few months.

Sleep:
Our daughter has always been a poor sleeper. She struggled with sleep as an infant, would wake up 6-8 times a night for the first 2 years, which resulted in our daughter and mom co-sleeping as most of these awakenings were for feedings. Eventually our daughter was down to two night feedings which continued until she weaned completely by 2.5 years of age. Our daughter would often scratch her cheek while falling asleep starting at around 6 months of age. Mom had to put mittens on her as her cheek was raw from scratching. Later mom had to put socks on her hands to prevent the persistent scratching during the night. This scratching of her face stopped around 2.5 years old. She still wakes up scratching her belly and the back of her neck most nights. Putting lotion on our daughter is difficult as she is averse to this and it is a nightly struggle to do so. She is on a regular bedtime schedule; she now falls asleep between 7:15 -7:40 and wakes around 6:45-7am.

Bowel Movements/Urine Output:
Our daughter could go up to 4 days without having a bowel movement when she was around 3-6 months and then it leveled out to once -occasionally twice a day. There are times she skips a day, but will resume regularity the following day. Reminding our daughter often to drink water is routine. Our daughter has always urinated large volumes at night during her sleep. We often had to change the bedding 3 times per week as she often urinated through her diapers. After potty training, our daughter wakes up each night between 11pm-2am on her own to use her potty to urinate. This is a regular nightly routine.

Solids/Food Struggles:
At 6 months of age mom introduced solids. Mom started with a few new foods every few days…this was a slow process as our daughter really had no interest in any other foods other than applesauce and oatmeal. By 10 months our daughter was eating a few more foods and by 2 years old she had a good appetite, but started to refuse new foods and would not try table foods or finger foods. We made most of her baby food (roasted organic chicken and vegetables pureed and organic beef stew with vegetables pureed and various vegetable purees). The chicken, beef and butternut squash, oatmeal, broccoli and apple sauce was our daughter’s main diet until she turned 2.5- 3. Mom has always supplemented with Vitamin D because of our daughter’s restrictive diet and gives her 600 IUs per day presently. During the course of encouraging our daughter to eat table/finger foods, she would pretend to eat the foods offered to her, but never actually ate them and it was only at 2.5-3 years old when our daughter started accepting some finger foods. When our daughter started to accept these foods, they were mostly high carbohydrate foods e.g.: homemade muffins, cookies, cheerios, plain rye bread, bananas, apple slices, cheese. Meals are still chicken and beef alternating back and forth, and mom is still pureeing them, as other textures are not tolerated. Mom inquired with our Pediatrician when our daughter was about 18 months old as to whether there could be a sensory issue to explain our daughter’s discomfort with certain foods or refusal to try certain foods. Mom also mentioned sensory issues to the Pediatrician because our daughter also disliked (up until about 6 months ago), having her diaper changed, teeth brushed, face wiped, hands wiped, hair washed and seldom wanted covers on her in bed. She started sleeping with a blanket on her when she turned 2.5-3 and will tolerate her hands and face being wiped. She is potty trained, but does not like her hair washed or touched. The Pediatrician referred us to a clinic for picky eaters. We spoke to the coordinator of the workshop at that time and explained our daughter’s eating concerns. The coordinator stated that our daughter did not sound like a picky eater. In response, we bought a book called Food Chaining which is for problem eaters and continue to work with the strategies in the book. Our daughter continues to add a few new foods every month. In addition to our current strategies, we are scheduling to have an occupational therapist observe our daughter’s eating habits. We are not aware of any food intolerances or allergies - but mom has always suspected cheese, and has removed cheese from our daughter’s diet recently.

Sneezing/Runny Nose/Congestion
At 3.5, our daughter started sneezing regularly and having a runny nose. Mom suffers from hay fever, and it appeared to her that our daughter did too. The episodes of sneezing, runny/congestion were off and on from August to early November. We did notice that our daughter was worse when she went outside during August/September and tried to limit her outdoor play to afternoons when the pollen count would be lower. The sneezing, runny nose and congestion started to happen at any time or on any day during September and October and our daughter would awake anywhere between 11pm and 3 am and complain her nose was running. Our daughter was very irritated by the constant blowing and her nose dripping, which would interrupt her sleep on a regular basis. Mom would wipe her nose and try to calm her down, but the constant dripping made it hard for our daughter to sleep. Mom tried to spray her nose with hydrasense for babies before bed; a homeopathic remedy called Coryzalia by Boiron and used saline wipes. Mom also gave our daughter Benadryl when incidents would occur in the middle of the night in order to make the episodes stop and to encourage rest. The Benadryl seemed to do the trick - but we wanted to figure out what was causing this. Mom kept all window treatments, bedding floors, carpets etc dust free, cleaning daily in case it was an allergy to dust, and we covered the mattress in plastic as mom thought maybe there was something in the mattress causing the issue. We were grasping for answers and even removed pillows, feather duvets, but the runny nose/congestion continued a bit longer, then started to gradually improve as November drew closer and/or a true frost had occurred.
We had many sleepless nights like this during those two months and we started to track our daughter’s food and activity to see where and when the sneezing began. We did not see a pattern and even though our daughter had been eating cheese since July, mom removed cheese from her diet at this point as well. By early December, the episodes had stopped and our daughter began to sleep better and was far more rested. We eventually reintroduced cheese and we did not see a reoccurrence of the sneezing/runny nose/congestion episodes after early November. By mid November, our daughter had her first big cold. It lasted the normal 5-7 days and during that time we used a natural rub for feet and chest called Breathe Easy for babies, continued with the saline nasal spray, Boiron Honey Cough Homeopathic Cough Syrup, a humidifier and a wedge to keep her head elevated a bit for drainage. Mom did try the Coryzalia again, but found it did not appear to be helpful.

Vomiting
1) December 21, 2015: 6:30am - our daughter woke up and said her back hurt. She immediately threw up twice all over the bed and the vomit was extremely pungent in odor was a dark brownish colour. She had apple sauce the night before which was a mixed fruit variety with dinner - it looked like this could be the contents of the vomit - although it had been 12 hours after her last meal. She did not have a fever, but her pallor was very pale. She was able to talk during each bout of vomiting, but was very upset as to why this was happening and was agitated. Between the hours of 6:30-8:30am our daughter threw up eight times - very small amounts that mom would characterize as being clear/frothy/yellowish in colour - almost stringy. Our daughter slept from 8:20-9:20am and had a small sip of water upon wakening. She threw the water up immediately and again - it was clear/frothy/yellow. By 10am, our daughter was up and appeared to be back to her old self, energy level was good and she was able to resume eating and drinking within an hour. She was however very irritable over the next week especially during the time she had a runny nose which we believed was due to the probiotics she was given from December 22nd - 25th.

** Her meal prior to bed before the vomiting was at 6pm and consisted of: roasted chicken with roasted carrots and onions pureed (6 oz) mixed with organic PC mixed fruit applesauce, cheezies for a snack, a few homemade gingerbread cookies and water (our daughter only drinks water) No known stressors positive or negative the days prior.

2) December 22nd - our daughter had a small bout of diarrhea all day and mom gave her Biogaia probiotics (mom had a bottle unopened on standby in the fridge) and mom administered her 5 drops (the infant dose) per day for 4 days. By the next day her diarrhea had ceased and she was having normal bowel movements. Mom stopped the probiotics on day 5 because our daughter had developed a consistently runny nose, she was agitated with having to blow it constantly and after mom stopped the probiotics - the runny nose stopped. Mom chalked it up to the probiotic having a histamine effect on her which mom had read about as probiotic “die off”.

3) December 31st - Our daughter had the beginning of diarrhea again. momnstead of the 5 drops of probiotics mom gave her one drop. Our daughter’s bowel movements returned to normal the next day.

4) January 1, 2016 - our daughter woke up at 6:45 am and said her mouth was dry, she was warm and thirsty. She said her tummy hurt and mom asked her where it hurt in her tummy and she pointed to her upper abdomen. She did not have a fever. Before mom could give her water, she threw up immediately. She threw up every 10-15 minutes from 6:45-9:45. Each time an estimated few tablespoons of frothy, clear, yellowish fluid. There was no smell like last time, no undigested food and no colour except the clear, frothy yellowish fluid. Our daughter asked for water around 10:30am, and felt sick right away but did not vomit. She had a banana and cheerios shortly thereafter and resumed her normal activity and energy level. She had a bowel movement at 12:40pm and 2 bowel movements the next day at 11:30am and 12:45 pm

**Her meal prior to bed was at 5:30 pm - roasted chicken with carrots, parsnips and onions mixed with plain applesauce, and a cup of cheese which mom shredded around 6pm (after this episode mom removed cheese) No known stressors the days prior.

5) January 13, 2016 - our daughter woke up at 4:00am and said she was warm and thirsty and her mouth was dry. She also said her heart was beating fast. Mom initially thought this may be hypoglycemia as mom have this and mom gave her a tiny bit of water and she threw it up immediately. It was clear/frothy/yellow in colour - stringy - with no strong odor. She did not have a fever, was agitated while throwing up, but able to talk articulately in between vomiting episodes. Mom tried to give her a few cheerios to get something in her stomach if it was hypoglycemia, but she threw up. She continued to throw up for the next 3 hours off and on similar to the pattern of previous episodes. She paused in her vomiting at 7:10am and had a bowel movement at 7:30am. She had a few more sips of water and threw up at 8am. By 8:30am she was ready to start her day and by 10am her demeanor was fine, energy level up. She had another bowel movement at 12:15pm. No known stressors the days prior.

**On January 14th mom took our daughter to our pediatrician. After listening to the vomiting patterns- the Doctor said the best guess was abdominal migraine and there was nothing we could do for her besides eliminate cheese and chocolate which are known migraine triggers and to continue to chart as mom had been doing to try and identify other possible triggers. We were advised to call the office if there were any more episodes. We have called in 2 more episodes since our visit on January 14th.

6) January 31, 2016 - our daughter woke up at 7:30am feeling symptomatic again. She said she was thirsty and felt sick and did not have a fever. Mom decided to try and give her 1ml of Advil every 5 minutes until mom reached her dosage 6ml. Mom also gave her 2 small bites of plain rye bread that she likes. She was able to take the Advil and the bread without incident, but did not want to get up and did not resume her activity until 9:30am. There were no stressors except she had been having fairly vivid dreams a few nights prior and was quite excited and playful before bedtime.

**Meal the night before was at 5pm - roasted chicken with vegetables (carrots, parsnips, onions) mixed with plain applesauce, bowl of cheerios for a snack around 6:30pm
**February 1st - Our daughter had small bowel movements in her underwear that occurred twice during the day after her vomiting episode. The next day - everything was back to normal.

7) February 19, 2016 - Our daughter woke up at 2:45am with a sore tummy. Mom did not give her water but tried to give her Advil again to prevent the vomiting. Mom hesitated knowing Advil could be an irritant, but gave her 3ml in case it is an abdominal migraine and waited 30 minutes. Mom gave her 3ml more and directly after she threw up. It looked like undigested bread or a cookie of some kind, light brown fluid with a strong odor similar to the first vomiting episode in December. She threw up 7 more times (mostly now light/frothy/yellow) until 5:00am. She slept from 5am - 7:30am but during this time she passed a large amount of gas. The gas was long winded and constant during her sleep. She got up at 8am and her energy level was up and she resumed her normal self.

**The night before she did not want eat much and finally agreed to eat a bowl of porridge, 2 pieces of light rye bread and cheerios.

Cool February 29, 2016 - our daughter woke up at 4:45am (she was restless all night and scratching herself which she often does on her tummy and back of her neck) and said she was thirsty. Mom gave her a small sip of water and she complained her tummy hurt and said she felt like the vomit was coming. She did not have a fever and her pallor was pale. She presented the same way as the other times and mom gave her 1ml of Advil - hoping to stave off the problem if it is an abdominal migraine. By 5:15 am our daughter vomited quite a bit of fluid with bits of undigested food (looked like a muffin that mom had given our daughter at 6pm the night before - the last thing she had before bed) and the colour turned from a dark brown to lighter brown as the vomiting progressed. She complained her left armpit was itchy before and during her vomiting. She was agitated during the vomiting but otherwise was talking coherently. Our daughter fell asleep at 7:00am and slept until 8:00 and woke up with her energy up and resumed her normal behavior. She had a bowel movement at 8:30am. During the day she seemed to have lost bladder control. She has been potty trained for 3 months so this was unusual. She had 4 urinary accidents during the day. Mom checked for any signs of burning, odor or fever etc to rule out a possible UTI, but she did not show any signs of same. During the night our daughter wet the bed and did not wake up after doing so at approximately 12am. Mom woke her up, changed the sheets and an hour later she got up and used her potty around 1am. The following day, only a few minor accidents and everything seems fine in that regard at this point.

**It should be noted that a week leading up to this vomiting episode mom did notice she was only urinating 2-3 times a day with regular volume, but for February 27th and 28th, she had very little volume but more regular output (3-5 times a day) despite her normal intake of water.

9) On March 1st we took her to a nurse practitioner to rule out the UTI, and she asked us to try and capture a sample of our daughter’s urine in a bottle at home and gave us a requisition for a urinalysis as well. She did not think our daughter had a UTI based on the absence of fever and no other factors except the several accidents the day before and a few the day we took her.

**We have been charting food, activity, stressors, bathroom and bedtime since December 21st and more thoroughly after her January 13th vomiting episode when it was clear to us that this was not a bug working its way out of our daughter’s system as a pattern was occurring and yet we remain confounded as to the triggers and/or if it is CVS.

Ketone
A most recent urine analysis (beginning of March, 2016) turned up trace ketones in our daughter’s urine. We are scheduling additional test to determine if diabetes or hypoglycemia are responsible for our daughter’s symptoms.

Itchiness
As outlined in the “Sleep” section, our daughter has always shown a propensity to itch her skin. In order to explore all treatment options in response to her symptoms, we recently administered Theridion as recommended by a Naturopath (beginning of March, 2016). On the first night after administration, our daughter scratched incessantly from about 1am to 6am (all parts of her body, especially back of neck, legs, arms and torso). Unsure if the Theridion exacerbated her tendency to itch, that night did remind us that our daughter is still feeling a need to itch.

Neurology
Friday, March 18, 2016:
After seeing a pediatrician early in the week beginning March 15 we were referred to a Neurologist by the end of the same week. After hearing the details and schedule of our daughter’s history, the Neurologist indicated that worse case for our daughter’s symptoms could be a tumour at the base of the skull. Prior to invasive testing for such a possibility we were asked to monitor our daughter from the date of the appointment and report if any additional vomiting events occur.

Thoughts/Concerns/Wonderings:
* Mom’s relentless research on CVS/Abdominal Migraine has revealed some correlation with mitochondrial dysfunction that could be a potential cause in some pediatric patients that suffer from CVS. We are concerned of the possibility of a mitochondrial issue and we need to rule this out. Our strategy is to get a urinalysis, abdominal ultrasound and metabolic blood tests (any recommendations would be appreciated).
* Because of the nature of the timing of the vomiting - which have cycled every few weeks, we are wondering about delayed gastric emptying and if the movement of the food is slowed or stopped? Mom has also learned that this is linked to Diabetes and we are wondering if Type 1 Diabetes would be in the realm of consideration given our daughter’s symptoms.
* We are wondering if there is an obstruction or blockage in our daughter’s ureter causing her to vomit?
* Gastro-intestinal or digestive system issues?
* Allergy or food intolerance?
* Environmental factors?
* Ketones present: diabetes, hypoglycemia?

Thank you for taking the time to read our story and we look forward to any insight that can be offered to us.
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