Emily's Story

2009-06-01T12:42:00.000-07:00

Had a repeat EEG that was not clear on 5/21. We are switching to Lamictal and dc'ing Topamax. She has been doing very well the last several days.
=)

2009-05-15T09:40:00.000-07:00

Not a good day. :(

Emily woke up in pain and cranky. I gave her the usual meds and added Prevacid per Cincy. Not quite an hour later, she was very unsteady on her feet and acting out terribly. She said her head hurt, so I gave her Advil. Took Alex to speech, and she was screaming and clinging to me. Speech was not clear. By the time I picked Alex up, she was acting better, but also acting very hyper. She sneezed--thick, green. At home, I gave her lunch. Right after, she grabbed her stomach and scream that she was hurting. Coughed and gagged several times but did not throw up. Put her down for a nap at 11:20am, still asleep as of right now.

2009-05-14T12:09:00.000-07:00

ARG! Emily was given cheese goldfish crackers at school today. After lunch, she barfed all over my chair. Speech is still good, behavior is good.

Meant to note that Emily has been drooling a lot almost everyday since the allergy testing. At night she is either throwing up or drooling *excessively*.

No seizures!!!

2009-05-12T15:23:00.000-07:00

Great speech day! Emily is talking clearly and using longer sentences today--what a beautiful thing! She is having some tummy pain consistently today. The last 2 nights, she has cried in pain about an hour after falling asleep, and the last 2 mornings she wakes in pain. I think it must be heartburn related because she getting any milk in her sippy cup to keep the acid at bay. I put in an email to Cincy to see what they want us to do about the elimination diet, but I have not heard from them yet.

I had her on my lap just a few moments ago, and she had a brief "blip" where she was not able to find a word and got "stuck." Very short time, and after she was fine.

So happy for another good day!

2009-05-11T19:08:00.000-07:00

This morning, Emily was still slurring her speech a bit. She was clearer, but still not as understandable as I would like by this evening. Continuing dairy elimination. Emily is definitely less puffy than usual and in a great mood today. No seizures that I have seen.

Dairy elimination stinks, literally

2009-05-09T09:02:00.000-07:00

Switched Emily over to rice milk last night as we start the dairy elimination. We were sprinkling her Topamax in yogurt, and we switched to applesauce last night. Today she had a huge blow-out diarrhea diaper with nasty white seed-looking things in it. I hope this gets better because I don't know which is worse: constipation or diarrhea?

Patch testing results

2009-05-08T18:27:00.001-07:00

Emily had the patches removed yesterday, and they look negative. Un-freaking-believable. I thought for sure we would know the culprit(s) by now. She was a bit whiny yesterday, but I did not see any seizures. She did not soak through her diaper either. Nose is clear. She has been messing with her ears, but they are not infected. Today she was pretty fussy, and by noonish, I noticed that her speech was not clear. I did not see any seizures until after 6pm, now she is steadily having them.

Updates

2009-05-07T04:31:00.000-07:00

Emily has been having long staring seizures for over a week now. Mostly in the car. We've bumped the Trileptal to 7mls AM and PM. With the increase, Emily's postictal behavior has been fine. She returns from the seizure without missing a beat--much better than before the increase. On Tuesday, she had patch testing for food allergies. I'm not sure if it is related (but i think it must be) but her seizure activity increase dramatically. She started having the long stares even at home. When I went to bed that night, I saw that she was having them in her sleep. In the morning, she completely soaked through her diaper. She also had a green runny nose and dark circles under her eyes. She is very unhappy about the patches because she says they hurt. Despite all this, she had a great day yesterday. I did not see any seizures. She is still asleep, but when she gets up I'll check the diaper situation. Speaking of which, Emily went poop in the potty three times yesterday!

April

2009-05-04T11:49:00.000-07:00

The beginning of April was wonderful. We had almost a week of just perfect Emily, then she got very sick. She coughed so violently that she caused subconjunctival hemorrhages in both eyes.

Time to dust off this old blog

2009-04-20T10:12:00.000-07:00

It is hard to believe that it has been more than 2 years since our Neocate days. I would love for this post to be about how Emily's tummy issues have completely resolved and how she is better than ever, but I can't. My heart is so heavy for her and what she is going through. Since the last post, Emily has been diagnosed with autism, epilepsy, and eosinophilic esophagitis. I plan keep track of her days here because my brain goes all mushy when it comes to details these days.

Today was a good day. Emily's preschool class put on a short program in front of the church today. She was such a ham! Sometime during her nap, Emily threw up again, and she has been coughing and gagging for several days. Her nose looks better at least. We increased her Trileptal to 7mls am and pm. So far, no improvement in the number of seizures, but great improvement in her postictal behavior. Tuesday we meet with the new food allergist for patch testing. Em was mildly positive on scratch testing for chicken and barley. I plan to go through this blog to do a timeline of the food/formula trials to show this dr.

What a difference a few months makes!

2007-03-18T09:34:00.000-07:00

Wow. All I can say is WOW!

Emily has come light-years in just a few months. She is on regular whole milk, and she basically eats a normal diet. She is growing well, and she is just amazing me!

As for her tummy, we have had just 2 episodes in the last 2 months. Both were corn/soy related. I'll take that over a daily battle with diarrhea and tummy pain. Emily still needs the Prevacid, so I think she will be on this for quite a while. I am just thrilled with her progress!

It looks like Emily might be speech-delayed like her brother and sister. I am going to bring this up with her pediatrician at her 2 yr check-up next month.

2006-10-01T13:32:00.000-07:00

Also on my Yahoo group, there was a link to an excellent article by Dr. Putnam. Here is the link:

http://www.jpeds. com/article/ PIIS002234760300 2737/fulltext

This article sums up all that we are feeling and going through. I just pray that our next visit with the new allergist yields more results, otherwise, I will be trying to call this doctor for an appointment!

BREAKTHROUGH!

2006-10-01T13:15:00.000-07:00

I was reading posts in my Neocate Yahoo group, and one of the posters shared a list of ingredients that "hide" corn proteins in them. (Corn is Emily's main food allergy.) I was feeding her Gerber's baby rice cereal with applesauce, and she got sick. When I compared the ingredients listed to the the list from my group, I found the culprit--CITRIC ACID! This is actually a corn derivative! Who knew??? I am so excited that I could just pop! Now I have a good list of ingredients that contain corn, so I can avoid them. LET THE FOOD CHALLENGES BEGIN!!!

I'm going copy the list of corn-derived ingredients below:

Acetic acid
Alcohol
Alpha tocopherol
Artificial flavorings
Artificial sweeteners
Ascorbates
Ascorbic acid
Astaxanthin
Baking powder
Barley malt
Bleached flour
Blended sugar (sugaridextrose)
Brown sugar
Calcium citrate
Calcium fumarate
Calcium gluconate
Calcium lactate
Calcium magnesium acetate (CMA)
Calcium stearate
Calcium stearoyl lactylate
Caramel and caramel color
Carbonmethylcellulose sodium
Cellulose microcrystalline
Cellulose, methyl
Cellulose, powdered
Cetearyl glucoside
Choline chloride
Citric acid
Citrus cloud emulsion (CCS)
Coco glycerides (cocoglycerides)
Confectioners sugar
Corn alcohol, corn gluten
Corn extract
Corn flour
Corn oil, corn oil margarine
Corn starch
Corn sweetener, corn sugar
Corn syrup, corn syrup solids
Corn, popcorn, cornmeal
Cornstarch, cornflour
Crosscarmellose sodium
Crystalline dextrose
Crystalline fructose
Cyclodextrin
Decyl glucoside
Decyl polyglucose
Dextrin
Dextrose (also found in IV solutions)
Dextrose anything (such as monohydrate or anhydrous)
d-Gluconic acid
Distilled white vinegar
Drying agent
Erythorbic acid
Erythritol
Ethanol
Ethocel 20
Ethylcellulose
Ethylene
Ethyl acetate
Ethyl alcohol
Ethyl lactate
Ethyl maltol
Fibersol-2
Flavorings
Food starch
Fructose
Fruit juice concentrate
Fumaric acid
Germ/germ meal
Gluconate
Gluconic acid
Glucono delta-lactone
Gluconolactone
Glucosamine
Glucose
Glucose syrup (also found in IV solutions)
Glutamate
Gluten
Gluten feed/meal
Glycerides
Glycerin
Glycerol
Golden syrup
Grits
High fructose corn syrup
Hominy
Honey
Hydrolyzed corn
Hydrolyzed corn protein
Hydrolyzed vegetable protein
Hydroxypropyl methylcellulose
Hydroxypropyl methylcellulose pthalate (HPMCP)
Inositol
Invert syrup or sugar
Iodized salt
Lactate
Lactic acid
Lauryl glucoside
Lecithin
Linoleic acid
Lysine
Magnesium fumarate
Maize
Malic acid
Malonic acid
Malt syrup from corn (barley malt is fine)
Malt, malt extract
Maltitol
Maltodextrin
Maltol
Maltose
Mannitol
Methyl gluceth
Methyl glucose
Methyl glucoside
Methylcellulose
Microcrystaline cellulose
Modified cellulose gum
Modified corn starch
Modified food starch
Molasses (corn syrup may be present; know your product)
Mono and di glycerides
Monosodium glutamate
MSG
Natural flavorings
Olestra/Olean
Polenta
Polydextrose
Polylactic acid (PLA)
Polysorbates (e.g. Polysorbate 80)
Polyvinyl acetate
Potassium citrate
Potassium fumarate
Potassium gluconate
Powdered sugar
Pregelatinized starch
Propionic acid
Propylene glycol
Propylene glycol monostearate
Saccharin
Salt (iodized salt)
Semolina (unless from wheat)
Simethicone
Sodium carboxymethylcellulose
Sodium citrate
Sodium erythorbate
Sodium fumarate
Sodium lactate
Sodium starch glycolate
Sodium stearoyl fumarate
Sorbate
Sorbic acid
Sorbitan
Sorbitan monooleate
Sorbitan tri-oleate
Sorbitol
Sorghum (not all is bad; the syrup and/or grain CAN be mixed with corn)
Starch (any kind that's not specified)
Stearic acid
Stearoyls
Sucrose
Sugar (not identified as cane or beet)
Threonine
Tocopherol (vitamin E)
Treacle (aka golden syrup)
Triethyl citrate
Unmodified starch
Vanilla, natural flavoring
Vanilla, pure or extract
Vanillin
Vegetable anything that's not specific
Vinegar, distilled white
Vinyl acetate
Vitamin C and Vitamin E
Vitamins
Xanthan gum
Xylitol
Yeast
Zea mays
Zein

2006-09-24T18:31:00.000-07:00

Yesterday, I gave Emily a full jar of baby sweet potatoes and a jar of baby rice cereal with applesauce. All day today, she has had a runny nose and pretty potent diapers. I was hoping that was going to be it, but she is in her crib right now coughing and gagging.

Two steps forward, three steps back.

2006-09-23T15:31:00.000-07:00

We may be able to get a small supply of Neocate for Emily! I'm pretty sure it is past the expiration date slightly, but I'm glad to at least have a chance of getting some more.

Emily continues to do extremely well with the Puffins and bits of chicken. The egg noodles did not cause a reaction either. She did get drop of milk from her sister's sippy cup, and that gave her a pretty yucky rash. She also had saltines that caused a reaction. The 2 ingredients in common were milk and soy.

I bought some allergy books recently, and I finally got a chance to read them today. The information is so overwhelming that I started to get depressed. I needed to come here and write out how well she is doing to convince myself this is all going to be okay!

2006-09-19T05:55:00.000-07:00

Emily got into some CORN chips the other day, and....NOTHING HAPPENED! No diarrhea, no rash, NOTHING! I've been giving her Puffins cereal (rice), which she loves, and that is going extremely well. She's had bits of chicken, and yesterday, I gave her 5 short egg noodles. We will see what happens today. This is pretty exciting!

2006-09-11T15:14:00.000-07:00

The last few weeks have been pretty quiet. Introduction of foods is slow at best. Emily throws food faster than I can catch it, so clean up has been funny and frustrating! She is at a point where she refuses to eat chicken or rice whole, and she spits out the mashed varieties as well. I still have no idea if chicken or rice agree with her because she will not eat them. We have found that she cannot have anything even cooked in oil or processed near corn without having a bloody stool episode.

Sunday she had part of a saltine cracker and developed diarrhea pretty quickly. The allergens that were possibly present were soy and milk. I'm giving her tummy a day between episodes to calm down, so that is why things are extra slow. I'm starting to panic because we will no longer be able to get the old Neocate in about 5 weeks. I still don't know what we are going to do then.

2006-08-22T18:35:00.000-07:00

Emily had a very "liberalized" weekend. Her grandparents, aunt, and cousins visited us, and we all had a great time. Emily kept raiding her baby cousin's stash of Cheerios, and she did not seem to be symptomatic. Today I gave her a small handful of Cheerios, most of which she tossed on the floor--new game, very funny--to Emily! Tonight, she is coughing and gagging, and the main suspect is Cheerios.

So, tomorrow, I'm giving her tummy a break and on Thursday, I'm going ahead with plain rice or rice cereal. She's been doing well on bananas and applesauce, so I plan to give her a serving of one of those as well.

2006-08-18T10:40:00.001-07:00

We met with Emily's new allergist today--for food allergies. He is cautious and is taking a "wait and see" approach, but he listened to everything we had to say and is going to run several tests in October to further diagnose Emily's issues. For now, Emily will have to stay on Neocate. The dr wants her to start on chicken, rice, and squash in addition to the potatoes and limited fruit she is eating now. I want to say that this dr is wonderful, but I've used that label before, and I have ended up disappointed. I will say that I was impressed with this dr. Before we left, he told my husband and I to take several cards in case we needed to call for any reason-24 hrs/day. He said even if we reached one of his partners, they all loved food allergies and would very helpful.

This is a slow process, but it is teaching me patience--which I lack and need! Emily is happy, and that is such a blessing considering all she has been through.

2006-08-18T10:40:00.000-07:00

Appointment with the new GI was AWFUL!

2006-07-25T14:24:00.000-07:00

Emily's history was taken by a medical student. This didn't bother me at all, but what happened next did. Em was stinky, so I put her on the table to change her. The student literally took over and changed her diaper. The manner in which he did this made me very uncomfortable, and I kept trying to wedge in there, but he was saying he had a 14mo daughter of his own, he was used to this. When ever I have changed a stinky or witnessed someone else changing a stinky, it was relatively quick, not a long, drawn-out process that this was. I got the impression he was enjoying it. This was a time where I will kick myself forever for not being more assertive by taking her away from him.

The student left with Em's history (including the print out that I posted below) to consult with the doctor. She came in, felt Emily's tummy, and left to get the dietician. The dietician came in and suggested yet another type of Neocate (despite the history of blood in stool after our last JR trial). She said that there is no way Em could be reacting to Neocate because it is elemental and has no allergens in it. (Exact same speech I got from the Neocate company.) I'm supposed to try the juice box version (E028) once per day. She asked about crackers, I mentioned that she reacts to all that she has tried, very recently Goldfish, and she told me to try animal crackers. I'm also supposed to add butter, white rice, turkey and chicken. (I will try rice again, and introduce chicken and turkey.) We talked a bit about offering diluted juice and offering new foods many times because Emily is at the age where she will naturally refuse new things.

The doctor came back in and said, "Part of being a social human is to eat with other people." She then basically lectured me about offering food to Emily, and that I may have to present a new food 20x or more until she takes it. (DUH!) She totally disregarded my statement that Emily WANTS TO EAT, she just reacts to EVERYTHING now! She told me she thought that the rash was due to bile acids, not an allergic reaction. I asked her not to discount the allergy factor because our son's main physical reaction to an allergen was a severe diaper rash. I gave the example that when our son was exposed to my sister's dog while we were visiting her, he broke out into this same type of rash. (Our son is severely allergic to animals.) She actually laughed in my face about that. (What's FUNNY is that when we removed the allergen in both cases--JR for Emily and the dog for our son, THE RASH WENT AWAY!) The doctor never asked about Emily's bloodwork or prior tests, and she did not even mention any other testing. She also never brought back up the blood or diarrhea and vomiting--NOTHING!

Emily's follow-up appointment with her is in FOUR MONTHS! I just don't know how this doctor could read Em's history, never really ask about anything, and then come to the conclusion that we should just start feeding her. AS IF WE HAVE NOT BEEN TRYING TO FEED HER!

I left the appointment and called my husband in tears. Why can't we find someone to help us?

Emily's Brief History

2006-07-25T14:14:00.000-07:00

This is the information that I typed up and brought to the new GI appt:

Pregnancy and delivery:
- Maternal infections treated with antibiotics-BV, bronchiolitis, UTI, GBS+
- Preterm labor treated with Terbutaline, bedrest from approx 20 weeks
- Phenergan and Zofran throughout, Ambien as needed throughout
- Induced birth at 37 weeks, no complications

Newborn:
- at 1 week check, pedi noted that anus was small, not worrisome, labial adhesions (continuing)
-Jaundice, hospitalized at 5 days old, phototherapy, breastmilk interrupted for 24hrs with Nutramigen
- extremely fussy baby, treated for reflux around 6 weeks-Zantac, improved, removed around 4mo
- stools never seedy, mucousy
- thrush (continuing)

5 months to 10 months:
- At 5mo tried cereal, okay for 2 days, 3rd day bloating, tummy pain, vomiting, gas, even plain rice cereal caused issues
- 6mo, again extremely irritable, given Axid-complete 180-happy baby! Still unable to handle cereal after 2 days
- 6mo check-up, referred to GI for possible FTT and food issues.
- 8mo, first appt with GI, advised to supplement with Pregestimil 2oz/day. Dx with FTT, slightly stunted and wasted, switched to Pepcid, ordered upper GI for reflux (negative)

Pregestimil trial: Complete refusal to nurse (teething and thrush), unable to express enough for demand, on Pregestimil only by 7mo.
- Projectile vomiting and diarrhea almost daily with Pregestimil.
- Began coughing, gagging, choking and vomiting multiple times per day
- Not gaining, sliding down growth chart
-Able to tolerate sweet potatoes, french fries, green beans, peas, carrots, no fruits

10 months to present:
- Rotavirus 1 day after turning 10mo old, hospitalized for 6 days, fell under 12lbs
- Introduced Neocate just before leaving hospital, very well tolerated
- Began gaining and growing appropriately on Neocate only
- At 11 months began projectile vomiting, diarrhea, choking, bloating cycle again. Noticed that Neocate had changed to a new label, made calls to find that the formula changed. Tried to slowly introduce, untolerated.
- Grows well, symptom free with old version Neocate only

Formula failures:
- Neocate 1+, 5 days, coughing, gagging, vomiting/diarrhea/bloating (v/d/b), rash
- Elecare- unable to get to more than 2 parts Elecare to 3 parts Neocate, severe rash, v/d/b
- Neocate Jr-longest trial 2+ weeks (June 06), also no more than 2 parts to 3 parts, nighttime vomiting only, diarrhea, worst rash, mucous in stool, dark blood in stool on last day of trial. During this trial, soaking diapers—would wake up in middle of the night soaking, soaking again by next morning
- Within 4 days of removing JR, rash almost completely gone, no blood, no diarrhea—all symptoms stopped.

Curently:
- Now reacting to fries in peanut or soy bean oil, sweet potatoes, refusing other baby foods. Soaking diapers after exposure to fries, etc. Exposure to 1 Dorito chip and 2 Goldfish crackers (separate occasions) led to bloating, diarrhea, return of rash.

Allergies:
Medicine: no known allergies, both siblings allergic to penicillin
Food: Corn, skin testing

2006-07-20T20:38:00.000-07:00

The last several days have been very good with Emily. She is strictly back on Neocate infant, and her tummy issues are so much better. She didn't catch much of a break though--poor thing is cutting 7 teeth right now--four of them molars!

Tuesday we meet with the new GI at a local university medical center. I'm hoping that they will be able to develop a plan and coordinate it. I'm bringing a detailed list of events/symptoms starting from my pregnancy to Emily's current issues. I made this appointment before we met the other GI, but since he could see us much sooner than this office, we went to him. I am thankful that I never cancelled this one. I have had NO luck getting through to the nurse or dr at the 1st office when I need them. The last time Emily had a bloody diaper, I called to see if she could be seen sooner, and instead of getting me in touch with the dr or nurse, the receptionist put me through to the appointment line. He may be a fantastic GI dr, but if I cannot get through to him when I need him, then what's the point?

Got the official brush-off from the allergist

2006-07-13T14:10:00.000-07:00

The allergist appointment was very discouraging and a huge waste of time. At the onset, he made it clear this was just, "How ya doing?" type of appointment, not a "Hey, we have a problem" type of appointment. I was describing Emily's reactions to JR and to the soy bean oil, and he basically cut me off. He then actually told me, "Sounds like we need to refer her to GI." HE REFERRED US LAST TIME! In fact, he referred us to our current GI who is a good friend of his so they could handle Emily's case TOGETHER!!!

I feel like I'm taking crazy pills or something!

So, Em's symptoms may still be an "allergy" but apparently this is not the type of "allergy" this ALLERGIST handles.

So, I called the GI office to see if they could see her sooner than 2 weeks from now due to the bloody stools, etc. I spoke with the front office, gave them the update, and instead of passing it on to the nurse or dr, she connected me with the appointment person. That person said, "No, we can't see her any sooner."

2006-07-12T20:50:00.000-07:00

Shortly after my last post, Emily woke up from her nap. I changed her, and there was more blood in her diaper. We gave her about 5 french fries yesterday, and that may have been the culprit. I called the restaurant to find out what type of oil they use--soy bean oil. I'm glad now that we waited on the soy milk challenge.

Our appointment with the allergist is tomorrow afternoon. I'm going to tell him all that has been going on with Emily since he saw her a month ago. (Has it really been that long???)

2006-07-12T14:56:00.000-07:00

I see Emily's future in this picture--a cell phone in one hand, waving goodbye to Mom with the other hand! She is a BUSY girl! Thank goodness she is feeling better!

Big Improvement!

2006-07-10T07:58:00.000-07:00

Emily has gotten a little bit better everyday since we stopped the JR trial. Her rash is almost completely gone, and she is overall much happier. Yesterday, she had her first "normal" BM in a long time. We are going to see her allergist on Wednesday, so we will see where to go from here.

As always when she fails a new food trial, I am reminded that the old Neocate will not be available much longer. We really must figure something out soon!

We're stopping the JR trial

2006-07-05T09:35:00.000-07:00

Emily has had a rough few days. After church on Sunday, we noticed that she looked chubbier. By that night, she was pretty puffy. Her poor tummy was very big and tight. I think either she was given some food in the church nursery, or she scavenged something here. I did not see her get into anything at home. Since then, the diaper rash continues to be bad, and she is still having diarrhea. She is also still vomiting (but thankfully not much), coughing and gagging. The last two nights have been very hard--she's not sleeping well at all. It has been over 2 weeks since we started JR, so I'm stopping it to see if she improves.

She's lost weight again

2006-06-30T13:46:00.000-07:00

Emily just got up from her nap. Diarrhea diaper and bleeding bottom again. I took her pants off and let her walk around in just her shirt and diaper. I noticed how thin her legs are right now! Even my husband --who is not a noticer--noticed. So, I weighed her. She's down a whole pound.

I was told yesterday that our health insurance is cancelled as of today because we did not submit the proper paperwork. I know for a fact that we did, so now it is in the hands of the insurance company to find it. If they can't find it and they reinstate us with a lapse of coverage, we will still be going a whole month without insurance.

These are the times that try a Mom's soul. My heart is just breaking.

We have most of the results!

2006-06-28T10:54:00.000-07:00

And they are normal! We are waiting on one more result to come back, but that could take a couple more weeks. This is good and bad to me. I need some answers, more for my own sanity than anything.

Right after I posted yesterday, Emily woke up from her morning nap. Her bottom is completely raw and bleeding, and her poo is not right at all. Of course, there is the outside chance this poo is normal for Neocate Jr, so I am waiting for her dr to call back about it. She is also incredibly fussy again. She is refusing her sweet potatoes that she usually loves, and she is acting like she is hungry all the time. She had over 48oz of formula yesterday! Where is my sweet, happy baby?

Neocate Jr is working!

2006-06-27T07:34:00.000-07:00

Emily has had 2 very good days in a row with Neocate Jr. I am still mixing it 3 parts Jr to 5 parts Infant.

She was pretty fussy all weekend, but even that seems to be working itself out. I was worried that taking her off Prevacid was causing that, but she is almost back to her old self. The last 2 nights she has also slept straight through. Before this she was waking up screaming in the middle of the night. Also, she does not smell so terribly awful in the morning...at least this and yesterday morning! I am thinking that we are almost in a detox mode, and we are getting all the bad (and STINKY!) stuff out of her system.

I am nervous about tomorrow. I get to call her gastroenterologist for her bloodwork results. As silly as this sounds, I am worried that they will find nothing in the bloodwork and have to go to more invasive procedures. I just guess it is weird that I am almost hoping they find something--just so we know and can hopefully treat it.

Started Neocate JR and concerning news from the company

2006-06-23T12:08:00.000-07:00

We started Neocate Jr yesterday (mixed with Neocate Infant). Emily only got 8oz of Jr, but she was like a baby on speed! I had to stop giving her the Jr to get her to take a nap, which she finally did late in the afternoon. Her tummy got very round and looked and sounded like a water balloon--all sloshy. But, other than that, she seemed to do okay yesterday.

Today, she is very fussy. She's had almost 8oz, and she is napping, and no hyper-babyness. Her diaper this morning was awful, and I'd like to call the whole thing off, but I don't really have much choice. So, we will continue. Her GI took her off Prevacid, so maybe that is the cause of the fussiness. I will call to see about putting her back on Prevacid or Axid if this continues. It will be wonderful if Jr works for her.

The Neocate manager emailed me about the other parents I told her about. She told me that no additional parents had called in with problems with the new Neocate Infant. I know for a fact this is not true. I posted to my Neocate group, and one of the other Moms called Nutricia again today. She had made a complaint in January about her son not tolerating the new stuff. The rep told her that her file and my file are now together. This is very, very concerning to me!

Today's GI appointment

2006-06-21T08:27:00.000-07:00

I think Emily's new GI is going to be great for her. I was very impressed with him. He asked lots of questions, going back to Emily's birth and going forward. He spent an hour with us, and it was obvious that he had read (and almost memorized) the records that our old pedi faxed over.

Emily remains a mystery. Her issues could still be an intolerance, allergy, or celiac. He ordered a a comprehensive panel of bloodwork for celiac, IgA, etc, and he wants me to call him in a week for the results. The lab was on the first floor of the office building, and his office was on the 7th. After we went to the lab and were waiting for Emily's turn, he walked in to order another test for her and to talk to me again! He was scouring her records for a specific test result that he wanted to see, and he wanted to ask me about it. Again I was impressed that he did this himself--other than our beloved pedi back home, no other doctor has been this personal.

He okayed the trial of Neocate Jr, but he wants me to hold off on the soy milk because of possible cross-reactions. If Jr doesn't work, he suggested Vivonex--I don't know much about it, so I'll have to look it up. After that, there just isn't anything else to try.

He told me he is a gastroenterology, not a nutritionist, so he is going to try to find the cause rather than treating symptoms through nutrition. He said if we need nutrition support, he will refer us to a nutritionist. He told me there are 2 classes of GI drs--those who focus almost completely on the nutritional aspects and then true GIs. He assured me he is a true GI.

My husband and I agree that the Lord brought us to MI for a greater purpose, and I think these two specialists (Allergist and GI) are proving that.

GI appointment is TOMORROW!

2006-06-19T10:37:00.000-07:00

The new GI's office called today. After reviewing Emily's records, they are seeing her tomorrow! The person calling asked me if Em had ever had an endoscopy, so I think she was scheduling that as well. I will have to take my son and older daughter with me to the appointment, so I am praying that goes well. It's awful not knowing any babysitters in our new area!

Emily's tummy is slowly settling down, but apparently, she is still vomiting sometime during the night. I am anxious to hear what this new doctor says!

Allergist appointment today and insurance vent!

2006-06-15T19:39:00.000-07:00

We met our new allergist today, and I was very impressed. He saw Emily and our son, and we got some very good information for both of them. Emily was skin tested again today for corn, potatoes, soy, tomatoes, and peas. Although the last skin testing was all negative, she was positive for a corn allergy! NO WONDER she reacts to the emulsifiers in some of these formulas--they are corn derivatives! She is negative for soy, the allergist suggested that we try her on soy milk. If she can tolerate it, that could mean no more Neocate! This dr thinks there are 2 possibilities for what is causing Emily's troubles, and both of which she will outgrow. At best, she will outgrow it by age 2, at worst maybe at 4 or 5.

The allergist highly recommended two pediatric GIs in the area, and I am going to call tomorrow to see if Emily can get in to see one of them sooner than the other one. Apparently, these doctors work closely together--which will be a nice change of pace for us. I am pretty tired of hearing conflicting information between all of these specialists!

Our new insurance company is denying coverage for Neocate. I called the company to appeal the decision. The woman on the phone told me that it is just not a covered benefit. I asked why. She said she didn't know and repeated that it is just not a covered benefit and that I could appeal, but it wouldn't make any difference. I explained that Neocate is a medical food--not jsut an infant formula--only to be used under the direction of a doctor, and here's what she said in response (paraphrased):

Some drs prescribe things that are not covered by your insurance. If your child has asthma and the dr tells you that jumping on a trampoline will open his lungs, the trampoline is not a covered benefit on this insurance.

So, okay. It took all my restraint to remain courteous, but I did somehow.

2006-06-14T18:48:00.000-07:00

We finally got an appointment with the new GI--at the end of next month! At least it will only be a 6 week wait rather than a 4 month wait, but still...

Emily has an appointment with the allergist tomorrow. I'm hoping for some answers. A little good news would be great too--the new insurance company is not covering the Neocate. I'm appealing, and I'm praying that the whole process is quick and successful.

2006-06-14T18:43:00.000-07:00

Emily had a great time playing outside today. She didn't like the feeling of the grass at first, but when she realized how cushy it was when she fell while she was trying to walk, she started to appreciate it!

2006-06-13T07:20:00.000-07:00

We are still waiting on an appointment for a new GI, but Emily's appointment with our new pediatrician went well yesterday. She is now between the 5-10th percentile!

I was reading posts on my Neocate group, and I read about a child who cannot tolerate the emulsifier in yellow label Neocate infant. That just crushed me, as silly as that sounds. No matter which way they turn, the company will be excluding a small population of babies who cannot tolerate one or the other. I had plans of getting all Neocate parents to write in saying that they would give up the "convenience" factor if it meant that other babies could tolerate the formula again. But, now having read about this baby today, I not going to do it. In effect, a change would be beneficial to Emily, but detrimental to this other baby. There is no winning here. Now, our only hope is finding out what is causing all of this and hopefully treating it.

This was a lot to take in this morning, and I haven't even had my coffee to soften the blow.

2006-06-09T18:05:00.000-07:00

We found a pediatrician near our new town, and Emily goes in for a check-up on Monday. We met with her yesterday, and we think she is going to be great for our family. She has a similar style and practice as our beloved pedi back home, which was a relief to find! On Thursday Em has an appointment with a new allergist. We are trying to get her into a pediatric gastroenterologist at the local University, but it could take up to four months to get in. Our former pedi is faxing in her records, so we are praying that Emily can be seen a lot sooner. I was very surprised that the new allergist took her so quickly--I called to get the appointment yesterday! (Hope the same is true at the GI!) This allergist is highly recommended, so I am hoping he can give us some answers. Em's right eye has been swollen since we moved, so I am wondering if she is allergic to something in her new surroundings. We will see, I guess.

We've stopped the trial of Elecare. Emily just never seemed to get better since we introduced it. She can handle 1 scoop every other bottle, but any more than that, her symptoms worsen. Also since we have moved, anything she eats (including the limited veggies she tolerated before) makes her sick. There are so many things it could be--the water in our new place, the move itself, new allergies, teething, so on and so on. She's coughing and gagging again and has diarrhea almost everyday, but thankfully, she is not vomiting.

We've given her several days off of Elecare to settle her tummy, and we are moving on to the trial of Neocate Jr tomorrow. Again, it will be a very slow introduction. If that doesn't work, we will be trying the Canadian Neocate infant.

The response from the Neocate company

2006-06-04T06:32:00.000-07:00

I spoke with Elayna McKenzie, the Neocate brand manager, again on Friday, and here is a recap of our conversation:

1. Nutricia is looking into alternatives for parents like me. They are trying to get the FDA to allow them to sell the Canadian Neocate Infant to customers in the US. Until the Canadian version of the FDA approves the switch to the gold formulation, they are manufacturing it with the old emulsifier. There are differences in the Canadian formulation—mostly a lower vitamin and mineral ratio, but otherwise, it is the same as our yellow Neocate. Elayna is sending me a case of it to try.

2. Nutricia is a relatively small company, and according to Elayna, they have to pick one formulation or the other—they cannot make both. They had so many requests from parents for a new emulsifier to make Neocate mix better, that they made the change. In Elayna’s words, this change “makes their [parents’] lives easier.” When I explained that this convenience factor is making my baby and other babies like her very ill, Elayna told me that the change not only makes the formula mix better, it also tastes better and looks more like real milk which is important for old children on Neocate. (I am willing to bet that most other parents would gladly give up these conveniences if they knew what the gold label was doing to some of our babies!!!)

3. Nutricia is an international company, and as such, the decision to change Neocate was a global one. The US division cannot change it back. In all markets, Neocate is changing or will change as soon as the governments in each market approve it. The management of the US division is investigating every report of problems that they receive, and after extensive testing, they have concluded all of these issues are not related to the change in Neocate. Elayna assured me that the change was because of money—according to her, the gold Neocate is more expensive to manufacture. Globally, they know about only 1 or 2 cases “here or there” of children not tolerating the change (except in the US market). Brand new babies who are immediately placed on Neocate are not having any issues tolerating it (Elayna knew of only 1 exception to this), and it is just older babies having issues with it.

4. Elayna told me there is “no chance” that they will begin manufacturing the yellow Neocate again.

5. Elayna called my situation “very unfortunate,” and she assured me that they try to listen to their customers. She also said that her CEO has received all our letters and emails, and they have frequent discussions via conference calls with their parent company in the UK about these issues. But, the US division is “kinda stuck” because of they are a small part of a global company. I do think that the company is trying to work with me to find a solution. However, I plan to redouble my efforts to get other parents having issues with the gold Neocate to call or email the company. If they listened to parents and changed it, they can listen to parents and change it back.

So, where do we go from here? The company has 40 cases of the yellow Neocate left, and they are willing to set aside a part of this supply exclusively for Emily. I had been misinformed about the potential for cross-containments in Neocate Jr—it is manufactured in a completely dairy and soy free plant. Neocate Jr has the same emulsifier as the yellow Neocate, and it has a lower carb ratio than Neocate One+, so it is possible that Emily will tolerate this better if we dilute it from 30 calories per ounce to 20 calories per ounce.

I do think that the company is trying to work with me to find a solution. However, I plan to redouble my efforts to get other parents having issues with the gold Neocate to call or email the company. If they listened to parents and changed it, they can listen to parents and change it back.

Thanks to friends and family searching the country for yellow Neocate, we have enough (along with the reserves from the manufacturer) to try these other alternatives. It is a slow process, and many days it is two steps forward, three steps back with Emily. Through it all, she continues to be a happy, sunny baby. Her smile makes it all worthwhile!

I got an email from the Neocate Manager!

2006-05-31T19:54:00.000-07:00

She asked me to call her! It was late when I got this email, so I called and left a message. I'm keeping my fingers crossed that she returns my call tomorrow. I will update when I hear more!

Please meet Star and her Mom!

2006-05-31T19:50:00.000-07:00

I have posted the letter that "DarkMelody" wrote to SHS about her daughter Star's struggles with the new Neocate Infant formula. Please take a minute to visit their website, www.OurTownUSA.info to read more about this courageous family!

Dear Sir or Madam:
I am writing to you with a complaint about the change in Neocate Infant formula. The new gold label version has given my daughter chronic diarrhea, restarted her episodes of reflux again that have been gone for months and is causing her to lose weight.
My daughter, Star, has been taking your yellow label Neocate Infant formula via feeding tube, since Nov. 12, 2002, until we had to start using the gold label last week. The yellow label Neocate Infant was the only formula that she could tolerate with her GERD, food allergies and absorption issues.
I am begging you to start selling the original yellow label Neocate. My daughter's life depends on it. If you want to see for yourself what the original Neocate Infant can do, visit our website www.OurTownUSA.info.
The new Neocate does dissolve better, but that is hardly a fair trade for chronic diarrhea, severe reflux episodes, lost weight and sleepless nights that it also gives. You would not put your own child through this torture, please do not do it to my little girl, she has been through enough already.

Link to a picture of the "yellow-labeled" can of Neocate

2006-05-27T10:09:00.000-07:00

http://www.shsna.com/pdf/neocate_new_formulation.pdf

Scroll to the bottom of this page to see the yellow-labeled can of Neocate (the one Emily needs) next to the new gold-labeled can of Neocate. We are asking the manufacturer to resume making the formulation that is in the yellow cans.

2006-05-27T08:16:00.000-07:00

Compare Emily at six months old, before the real problems began, to Emily at 9 months old when she was starting to become very thin. At 9 months, Emily had just started growing into 3-6mo size baby clothes.

2006-05-27T08:09:00.000-07:00

This is Emily (10 months old) in the hospital on that awful day before we began Neocate.

2006-05-27T07:51:00.000-07:00

This page is dedicated to our daughter Emily Susannah. She is a bright, wonderful 14 month old baby with a story to tell.Emily was diagnosed with failure-to-thrive around 6 months of age. About this same time, I realized that she was not tolerating baby cereals, fruits or vegetables. These foods caused her pain, vomiting, diarrhea, and weight loss. After a bout with rotavirus and a failed 2 month trial of Pregestimil infant formula, Emily's pediatric gastroenterologist prescribed Neocate infant formula.

Neocate is a highly specialized infant formula that is hypoallergenic and amino-acid based. It provides complete nutrition for babies with severe food allergies and multiple intolerances to food proteins. It is sold only by pharmacies and must be used under the supervision of a physician.

I remember the day that Emily started Neocate very well. She had been in the hospital for five days due to rotavirus, and she was still very sick. That awful morning she weighed just under 12 pounds--she was 10 months old. We began to give her the Neocate very slowly, and in combination with IV fluids, Emily literally bounced back overnight. She was released the following evening, and since that day, the Neocate has lived up to its nickname, "Liquid Gold" in our household. Neocate helped Emily to begin growing and gaining weight!

However, a few weeks after we began Neocate, Emily had what I thought was a relapse of rotavirus. She was in obvious pain with vomiting, diarrhea, and weight loss again. I remember sitting with her in our pediatrician’s office waiting to be seen when I began to wonder about the recent change in the label on the Neocate Infant cans. The formula in the new “gold” labeled cans looked and smelled different. When I called 1-800-NEOCATE, I was assured that the differences in the two formulations were minimal and that the main change was the emulsifier. At that time, I was able to find more of the yellow cans of Neocate that I was accustomed to using, and I stopped using the gold-labeled cans entirely. Emily’s pain and GI symptoms went away completely. I tried a gold labeled can again later, and even diluted with the old formulation, Emily’s symptoms returned.

The manufacturers are no longer making the version of Neocate that Emily needs. We are pursuing other formulations, but we are not having any success. There are very few cans of the original formulation left anywhere, and we are running out of time due to this shortage. Until we know what is causing Emily's issues, we need a steady supply of the orignial Neocate, as this is her sole source of nutrition. Emily is not the only baby having issues with the new formulation of Neocate. The company is aware of this, and they are suggesting other products from their line as a substitute, but these are not nutritionally equivalent to Neocate Infant. As a last resort, we have tried these other products with no success.

We are asking the manufacturers of Neocate Infant Formula, Nutricia North America (formerly SHS North America), to produce this very special formula once again. We need your help to make this happen. The link below will give you the Nutricia website with the manufacturer's mailing address and email address. In your letters and emails, please ask them to bring back the original formulation of Neocate "For The Babies' Sake." Thank you

http://www.shsna.com/pages/contact_us.htm