The Little Scout Who Couldn't

[Karen Jensen]

I would love help sorting out and coming up with a plan to help my Scout, she is 22 months old. She has slept through the night comfortably only 4 nights in those 22 months. Many days she is in mild to severe pain - either from reflux or in her tummy. About 4 days a week she refuses a meal. She has gone down below 10% on the growth chart

History:

Hospitalized for seizures at 5 weeks, determined they were not seizures but a result of acid reflux

Hospitalized at 6 weeks because she stopped breathing and turned blue. Placed on apnea monitor for a period of months.

Even on Neocate, an elemental formula, she was not symptom free or able to be comfortable.

Symptoms:

1. Constant, frequent night waking - screaming, crying, gagging. (She has only slept peacefully for 4 nights in her entire life. Not consecutively). Lots of back arching in her sleep.

2. You can often feel the acid coming up if you have your hand on her.

3. She often swallows really hard then sucks voraciously.

4. Frequent wet coughs and burps

5. 3 or 4 times a week, she will play and her play is interrupted by frequent, brief outbursts of screaming and or crying. This is intermittent but she is clearly in pain.

6. Various rashes (face, hands, belly, tush) - photo documented

7. Horrible, loose bms with other descriptors I will leave out. Those who know will know.

8. Frequent paci sucking or drinking and grazing. Will drink up to 80+ ounces a day if you let her.

9. Frequent bloating and gas

10. Sometimes when she is eating she will have moments when she cries out.

11. Constant runny nose (rhinitis)

12. Lifts shirts, puts hand on tummy and tell you it hurts

13. Sometimes she will take a few bites of food and gag or cry and then refuses food.

Other things the doctor noted:

1. She always has fluid in the ear and is on the verge of an ear infection or has an ear infection

2. Red, raw throat

3. Low iron

4. Eats 24/7 but has only gained 1 lb. in the past 6 months (She has been 22 lbs and a few ounces since around 12 months, today she was 23 lbs and 1 ounce). She has gone from being in the 95th percentile to the 20th for weight and the 35th for height. Head size is pretty consistent. On 8/24 she was back down to 22lbs. even

Doctors Appointments and Testing:

5/28 Stool samples were negative for bacteria and parasites.

6/2 Allergist update: Skin prick tests were negative. Allergist said a frank food allergy is different then a gi food allergy (or food intolerance). Sent us back to gi specialist.

Did a gluten food challenge for 2 weeks. Symptoms increased significantly during this time period.

Daycare provider mentioned she no longer slept at nap time, lots of moaning and gagging in her sleep.

More rashes appeared. Did not play during the day.

6/11 - Blood draw, stopped consuming gluten again.

7/8 - Still red, raw throat. Now skipping about a meal every 3rd day. Daycare has even noticed a couple of skipped meals. Sometimes sleeps restlessly/fitfully at naptime - always at nightime. Wakes up coughing/gagging. On maximum dose of prevacid. Ped wants us to add children's zyrtec or clairitin to her arsenal. Doctor also ordered a swallow study to see if she is aspirating as doctor witnessed her coughing while drinking out of sippy cup. I reminded doctor that one of my complaints is that she coughs almost every time she drinks, and often when she eats. Weight down slightly. Dr. again mentioned she felt strongly that gi specialist needed to test her for EE. Next gi appointment is 7/23

8/17 - Swallow study, all clear and good

8/24 - Upper Endoscopy and Flexible Siegmodoscopy

Told that day there was blood in her stomach and small intestines, inflammation and nodules up colon - indicative of food allergies

8/30 - Told that biopsies showed she was negative for Celiac and that her Esophagus was clear of EE (phone call with Dr.) Dr. wants to put her on respitol or something - an antihistamine like Benadryl - to stimulate her appetite and help her sleep. We are requesting copies of her records and exploring our next options - a second opinion? another allergist? something other than gi - perhaps autoimmune? just throw our hands up and accept that this is her life and carry on as we have been?

Through trial and error we know that she can't eat:

Dairy

Wheat/Gluten

Soy

Corn

Tomatoes

Oranges

Carrots

Eating Issues - a snapshot in the days of Scout

2 times on vacation, cried through lunch and would not eat

Friday 7/2 - would not eat breakfast

Sunday 7/4 - would not eat dinner

Wednesday 7/7 - would not eat dinner, indicating pain

Thursday 7/8 - did not eat lunch or dinner, indicating pain

8/12 - Threw up approximately 30 minutes after dinner

8/21 - threw up breakfast, cried in car (an abrupt change in behavior, rode rest of way with head turned to side, indicating pain)

8/22 - playing and had abrupt change in behavior laying head on ground and crying, ate green beans at dinner and asked for seconds. After 2 more green beans she refused anymore pushing bowl away and sitting in chair with head turned to side and back arched.

8/28 - Told me stomache hurt

8/29 - threw up breakfast, developed rash all on stomach and back as day progressed

9/13-17 - days of pain, daycare workers said she was whiny and needed a lot of consoling, didn't eat dinner 2 nights in a row

[Yvonne LV]

Oh, My heart is with you guys. That is so tough!

What is her formula made of?

[Yvonne LV]

I see you wrote on FB that she's not on a formula right now. http://www.neocate.com/aaa_neocate/683-neocate-infant-ingredients.html was the ingredients that I could find. I hope Pat finds some good info for you!