Elijah’s Formula

The new formula came today. I’m so happy it came, but I’ll admit I’m a little nervous about giving it to him. He has been on Neocate One + (plus) for 11 years. I pray he can tolerate this formula well.
The new formula is EleCare.
I don’t like that this formula has to be measured.
The Neocate came in packs like this and all I had to do was open and pour it in a container of 6.5 ounces of water.
 
Just as Neocate was, the EleCare formula is very expensive. 6 cans is $204.00 I’m not sure at this moment how long 6 cans will last. When Elijah was a baby his formula was $40 a can and he used a can a day.

Just to explain how Elijah gets his formula…
After the formula is mixed up, it is poured into a feeding bag like this.

At the end of the tube I add an extension tube like this.

That tube fits into a plug on Elijah’s stomach next to his belly button like this. The balloon part is inside his stomach. I have to change his button if the balloon burst or if the button gets dirty and also when he outgrows the button size.

Then the tubes are ran though this pump.

If we are going out we put the feeding bag and pump into a backpack like this. Elijah doesn’t like wearing his backpack. It’s heavy and hot on his back.

If we are staying home then the feeding pump stays on the IV pole and the feeding bag is hung from the top. Elijah pushes the pole around the house with him.


Just a little info on how tube feeding works. Elijah has been tube fed for 9 years, before that he drank his formula from a bottle.

I’ll update on how the new formula is going after he has been on it a while.

Eosinophilic Gastroenteritis - Day 2

Elijah was born by a scheduled c-section and it did not take long for me to wonder if something was wrong with him. He seemed sick from the get go. I was trying to breast feeding him, but it wasn't agreeing with him. He broke out in a full body rash and clawed his face up. He dug skin out on his cheeks. Poor baby looked so bad.

Elijah was returned to the hospital with jaundice shortly after we got home from being released.
While there we determined the breast milk was making him sick. So we tried formula and that wasn't any better. The first month of his life was very hard.

Elijah screamed 12 - 14 hours straight. He never slept no more then 2 hours at a time. He never had a solid bm, it was always green water with mucus. Very gross and smelled horrible.

I took him back in to the doctor and told her I thought something was wrong with him. She decided he had colic and told me it would pass around 3 months of age. I was watching the calendar. The poor baby never stopped screaming.

At 3 months old he was still screaming non stop so I took him in and they determined Elijah had reflux. He was put on reflux meds and they made things worse. We tried different reflux meds, but nothing helped, they all really made him worse. He threw up all the time and still only had green water bm and never a solid bm. During this time we tried every formula on the market, even the ones I considered to be pricey.

At around 4 months old I had went in to see my doctor. I was so run down and about to drop. I told him something was wrong with the baby. So he talked to me about it and he got us an appointment with a GI doctor in another town.

By the time of our appointment date at around 5 months, Elijah was really sick. The doctor and nurse were surprised at how much he cried. I told them he never stopped, but they probably didn't full understand that since they only saw him for a couple of hours.

Test were set up for Elijah that were supposed to be outpatient. The PH probe showed horrible reflux and the upper GI scoped showed him full of eosinophils. All I remember is the doctor coming out saying Elijah could not go home. He ordered a new formula called Neocate.
I missed all the information about eosinophils all I knew was we were getting a new formula and this was going to be the magic formula that he could take.

Elijah was diagnosed with eosinophlic esophagitis, eosinophilic gastroenteritis and eosinophilic colitis. Elijah had eosinophils from one end to the other.
http://www.apfed.org/egid.htm

At the time I didn't catch much of the diagnosis, I was just thinking this formula was going to make it all good.

After a few days Elijah began to show such improvement. After a week he had his first solid bm at nearly 6 months old. The first time it was green water! The hospital staff couldn't believe what a change he had made from screaming to sleeping. It was like having a new baby.

The doctor would not let us leave the hospital until we had a supply of this high dollar formula.
Neocate was $40 a can. Insurance would not cover the formula that you could only get with a prescription at a pharmacy. Once we got up a supply of this formula we were allowed to go home.

It was like bringing home a different baby. He was drinking his bottles and he was sleeping and he wasn't screaming 12 - 14 hours straight.

All was good for a few months until the doctor wanted us to start him on baby food. The night mare started all over again!

Eosinophilic Gastroenteritis - Day 1

This week I'll be blogging about a disease our 8 year old son, Elijah, was diagnosed with when he was 5 months old.

I had never heard of Eosinophilic Gastroenteritis before our son was born. We had big plans for this child to eat food. Our oldest son has an eating disorder diagnosed as adversions to food. So while I was expecting Elijah we told everyone this child was going to eat. God had other plans for our lives.

This week I'll share how Elijah was diagnosed and where he is today.

Update on Elijah - Day 34 of being sick

Elijah's doctor came around this morning and she is going to call his GI doctor in Ohio today.

She plans to set up an upper GI test for Elijah today, but wants to talk to his GI doctor first.

So we sit and he's not able to have any formula, rice or apple until he has the test done. It could be late evening before he has the test done. Read that as a LONG DAY with Elijah asking for something to eat.

If the test shows his reflux is out of control even with taking 30mg of Prevacid a day she wants to do the Nissan surgery. I don't feel the problem is his reflux and I'm not for the Nissan surgery.

If the test does not show anything she will send him to a Pulmonary doctor to see what he has to say.

Our biggest fear is that his eosinophilic disease is out of control and his esophagus is flamed or even invaded with eosinophils.

Elijah has been on antibiotics and steroids for a month now and they have not helped at all so we just don't know what is going on with him.

But no matter what happens his doctor wants us to head to Ohio to see Elijah's GI doctor.
We are not prepared to make a trip like that at this time.
Jody and I will have to talk about that tonight.

Please pray for us as we figure out what's going on with Elijah.

We missed the month of February

Elijah got sick on Saturday, February 2 and and Dakota got sick on Monday, Feb. 4th.

They both went to the doctor on Tuesday, Feb. 5. Elijah went back to the doctor on Saturday, Feb. 9 and ended up in the hospital with the flu for 5 days. The next week both boys went back to the doctor on Wednesday, Feb. 20 (that happened to be Dakota's birthday). Dakota seemed to get better, but not Elijah. The next week Elijah went to the doctor on Tuesday. By Wednesday night Dakota was seemed to be worse where I thought he was better. Thursday they were both pretty sick so Friday morning I took them both in. Dakota got prescriptions (3 + 2 he already had) and Elijah got admission papers for the hospital. And now it's March.

I took Dakota to Target to get his scripts filled, then home and I packed a few things and then headed to the hospital with Elijah.

We missed the whole month of February.Poor Dakota's 16th birthday was spent at the doctor's office and then off to get Elijah's chest x-rayed.
He said it was so much fun we should plan to do it again next year!

I did give him some money and left Elijah at home with Jody and took Dakota to the mall for a quick shopping spree. He bought several things he wanted then we went to IHOP for a birthday dinner. Jody took him to the movies on Friday and they went off to play golf the next week.I'm sure the golf trip is what made him sick again, but maybe his birthday was saved by getting to do a few special things.

Elijah has Eosinophilic Gastroenteritis, he was diagnosed at 4-5 months old. He has lived on Neocate formula with no foods most of his life. Last year we were finally able to add rice and apple into his diet, so now he has rice, apple and Neocate formula.
Food makes Elijah sick.
I'm not really sure the rice and apple are great for him, but he is the least sick on them then anything else.

He takes his formula through a feeding tube into his stomach. He has a little button on his stomach, we open it and plug him up.

Elijah has good days and bad days. Some days he wakes up and just wants to lay on the couch most of the day. He may lay around a few hours before he feels like doing anything. His stomach is often bloated and hurting. He switches back and forth from being constipated and then having diarrhea all day long. I never know what the day will be like until Elijah wakes up.

We do try to continue on with life and help Elijah have a normal as possible childhood.
It is times like this that reminds us how medically fragile Elijah is though.
Unlike other children who may get colds and such, Elijah can not take over the counter feel good meds like you'd buy at Wal-Mart or Target. Elijah can't even take Tylenol for fever.
Matter of fact Elijah can't take most prescribed meds either. He has reacted to so many meds that his doctor is very careful with what she gives him. He reacts to anything through the gut.
We know he can take rocephin shots or through the vein so that is what we stick with.
Right now in the hospital he is getting Rocephin and steroids through an IV. He is also on breathing treatments.

Elijah has been attending two different homeschool co-ops, at this moment I don't know if he is going to be able to attend the rest of the semester. We sure don't want him to get sick again once he is better.

I just ordered him the cool mask with flames on it as pictured above to wear out in public, but he doesn't seem to happy about having to wear it.

Elijah is doing better tonight. Dakota is still sick at home and I hope he gets well soon. I'd hate for Elijah to get home and get sick again from Dakota.

So the month of February came and went, we missed it.