need help with feeding issues/bottle/formula please

[amndmnk]

cross-posting from Life with babe, thanks for reading.

need desperate help with bottle/formula please....
hello,
I will try to keep it shortish....I posted months ago with BF issues but since can't find my username.
DS was 1 in August. Normal PG/birth. 3 normal older siblings. He weighs 18 lbs, looks like he is 6 months old, and he really doesn't do anything except hold his head up and roll.
I tried my heart out to BF him but I could not get it to work and could never figure out why. He never gained any weight. He is my 4th so I felt like I kind of knew what I was doing and I did not feel that supply was an issue.
Since then, he cannot tolerate ANYTHING. I have tried: milk formula, lactose free formula, soy formula, Nutramigen, Neocate, Elecare, Weston Price goat milk formula, oat milk/carrot juice formula, cow's milk, soy milk, and I just mixed up some of the beef broth/liver but it keeps getting stuck in the nipples! All animal products caused severe constipation which Lactulose, Miralax, molasses, water, etc did not budge. The oat milk seems to be causing some kind of awful stomach upset but his poop is liquid.
He is hypotonic and has been diagnosed as legally blind with optic nerve atrophy. He has had a normal CT scan and MRI. Allergy tests all came back normal. He is very developmentally delayed. I feel it is getting worse, he is crying constantly and the past few days he won't eat more than 15-20 oz per day. He gags on solids and is now gagging on his bottles.
The pediatrician keeps telling me they are out of ideas and to call the gastro. Gastro says more tests more bloodwork. Gastro also prescribed cow's milk mixed with Nestle Carnation Breakfast for his main source of calories. (?!) I read on here about metabolic/mitochondrial which I now wonder about. I called ped and again they said call gastro. I called gastro and they said to wait for his follow up appointment which is in two weeks.
In the meantime he is screaming half the day and won't eat hardly anything. I am ready to take him to the ER. I am at the point of being beside myself. ANY ideas at all?
He is currently having PT which is helping slowly. However I feel like no one will help. We have to drive to the next town 40 miles away for any specialists or tests. I am PG again so you can imagine I am having a breakdown. Thanks so much for any help.
Amanda

[2boyzmama]

I can't type now, trying to nurse kids to sleep, but I know how frustrating it can be to have many views and no replies, so I wanted to reply and say I'll be back later

[nextcommercial]

I really don't know. But, I wanted to respond, because I can feel your tension. I truly believe that you know he's in serious need of something, and none of the doctors are helping you.

http://reliableanswers.com/med/homem...by_formula.asp

My friend used this recipe with rice milk and/or almond milk, and she said it was perfect for her son. He was also crying non stop, and couldn't eat. He was diagnosed when he was four with life threatening allergies. So, his body was just miserable because of all the allergies. He was allergic to most foods, grass, dirt, basically everything except for ice. She made all of his food with potato flour, rice, and it took a lot of patience and time, and she was in tears every week because for the first year, she didn't know what was wrong. She figured out most of it on her own, because she couldn't get the doctors to help her collectively. One doctor told her to try something, then the next doctor told her the opposite.

However, he did not have delays. He just had pain, and crying. You are dealing with other issues, so I am not suggesting this is a food allergy.

I hope you find the right help. I can't imagine how tired and worried you must feel.

[Wild Lupine]

s

I am sorry you and your son are going through this. I only have a moment, but upon reading your post it sounds like your son would be a good candidate for breast milk donation. If your doctor writes a prescription there is a good chance you insurance will reimburse the cost through a breast milk bank.

If you insurance is like mine and won't pay for it, there is a group for people with extra milk and those in need to connect with one another. It used to be a Yahoo group but is now here: http://milkshare.forumotion.com/

My son couldn't nurse, couldn't tolerate formula well, and was diagnosed FTT. He got almost all his milk through Milkshare for months. He's now 25 months and healthy, though still has severe difficulties chewing and swallowing.

[coyotemist]

Could he be screaming from reflux, not actually the formula? Maybe he needs prevacid or omeprazole.

Most kiddos can tolerate Neocate or Elecare, it's pure nutrition all broken down. If one of those products caused constipation, mix it with fewer calories per ounce.

He may end of needing a g-tube. He would get his nutrition through a tube in his belly, mouth food would just be purely for "recreation" and probably at first you would just work on getting him to tolerate things in his mouth. Quite a few times I've heard of kids developing oral aversions when eating hurts (reflux). They won't swallow because they know it's not going to feel good...for most of us eating is a feel good thing.

A mitochondrial disorder would require a visit with a geneticist. It sounds like you need to add a neurologist to your team first, then maybe a geneticist.

And honestly, if you are that worried about him, take him to the ER. Do whatever it takes to get them to listen to you, or find a new pediatrician.

[texmati]

I was just thinking of your little one. I hope things are going better.

[cristeen]

For the beef formula, try blending the liver w very little liquid. And i believe it does better in a fp rather than a blender. Also get the next size up nipples. If you get a smoith blend, run it through a fine seive ti catch any chunks, and then w a larger nipple you shouldnt have any problems. And if he doesnt tolerate beef, id suggest trying chicken and possibly even lamb. I know a little boy whose only protein source once weaned was lamb, he was allergic to everything else, and he also did not tolerate any of the formulas (a corn allergy can cause that).

[cristeen]

A couple important questions - how long do you have him on any particular formula before you deem it a failure? Is there a symptom besides constipation leads you to deem it a failure?

[Natanya]

Sounds like you've tryed lots of things. i feel for you and hope for the best. My advice...go to a natropath or an applied kinesiologist.

[isisreturning]

Oh, so sorry to hear of these woes. Always good to follow your mama's intuition and don't hesitate to keep seeking care for your DC until you get a satisfactory answer.

If you continue down the trying-different-formulas path, I will say that the Vitamix has been a wonderful addition to our family. Our DD has a g-tube and doesn't eat orally (for way different reasons), and we love being able to feed her "formula" that's made from real, whole foods. With a Vitamix, the liver would be no problem. You could also experiment with other protein sources (beans? nuts? veggies, berries, etc.) - the Vitamix really liquefies everything. Of course, with your DC you'd have to blend things with taste in mind.

Best of luck - and no, I don't have any financial or personal connection to Vitamix. Just a satisfied user.

[girlzmommy00]

I was wondering what reactions he had to all the different formulas & how long you waited in between trying a new one. Sometimes GI issues can be separate from allergy issues & it can take up to 3 weeks to get something out of your system. So you could have moved on to something new but the old thing can still be in your system causing reactions.

If you check the Neocate website, they have about 7 or 8 different lines of medical food replacement besides just Neocate. They have their Neocate Jr, Splash, Nutra, etc. Maybe one of those might be a help?

I have a little guy on nothing by mouth except Neocate. We found that he reacts to all food, medications (flavorings seem to be bad but he can have tylenol suppositories for fever), pedialite & even his shots. If the only thing going into his body is Neocate, we're good.

Maybe some of the other Neocate brand products might work for you guys even if regular Neocate was a problem. I know my DS can tolerate some Neocate products but not all. And depending on your state & ins, it may be covered. Many states now have legislation to cover elemental formulas & medical food.

[girlzmommy00]

P.S. Playtex disposable nursers & Avent both sell nipples for thicker feeds.