Pls help my son is wasting away

[celticgypsy]

My son had been having ongoing "episodes" every 21 days that consisted of low-grade fever, a stiff neck, constant green mucousy (and smelly) diahrrea - which would happen right after he ate and frequently the rest of the time. (He is still breast fed). After alot of tests and such we finally found he had a urinary tract infection and was put on an antibiotic. He was supposed to stay on this antibiotic (Bactrim) for at least until he could have the VCUG test done to see if he has reflux from the urine into the kidneys. He has been on the antibiotic for almost 3 months now straight while we wait. His test was supposed to be this coming Thurs, but over the weekend (Well, it started Thurs night exactly) his former symptoms (which had disappeared while on the antibiotic) returned -practically worse. He was screaming/crying in pain a lot (we had to give him tylenol suppositories because he can't handle the liquid), wouldn't eat AT ALL (so we had to give him pedialyte by a syringe) and was getting scarily lethargic. Today we brought him to the Drs (his Gastroenterologist) and he said he thinks it was an allergy to the milk we tried to reintroduce daily the past 2-3 weeks (though originally he told me an allergy couldn't cause those symptoms:stiff neck, etc). SO we are back off milk for now. (Forgot to mention my son is HIGHLY allergic to soy).

Now his main concern is my son's "failure to thrive". My son, who's just about 18 months old now is 17 lbs 3.4 oz and 27" in length. He's really small, and lost about a quarter lb in the past few weeks (interesting enough is that he picked up alot after starting on the antibiotic but then after a month started going downhill again and now actually LOSING weight, which is scary. Right now we are STILL trying to get him to eat solids, but he won't try ANYTHING - won't touch any cups, or even sip water from a sippy. His ONLY nourishment was/is breastmilk and now my DR says that's not enough - he needs more nourishment at this age (right now, so he won't be hospitalized eventually) and wants me to put him on this hypoallergenic formula. But the ingredients are TERRIBLE! I try really hard to eat organic and find it APPALLING what is in these formulas. It is Junior Neocate Hypoallergenic "Amino Based Medical Food for Children over 1" and it is ARTIFICIALLY FLAVORED, ack.
Here is some of the ingredient list:
CORN SYRUP SOLIDS (47%), fractionated coconut oil, canola oil, high oleic safflower oil, ARTIFICIAL FLAVORS (5%), then a huge list of things I don't know what they are but assume they're vitamins and minerals, as well as artificial sweeteners: acesulfame potassium, ferrous sulfate, hydrochloride, a lot of sulfates, etc etc etc.

I REALLY do not want to give my son this! Is there any organic (or at least a bit better) alternative that is dairy and soy free? What about making my own homemade version?

I just don't understand giving a child with poor gut and malabsorbtion issues something made mostly with CORN SYRUP. But they are only concerned of the vitamins/minerals.

When I asked the Dr they said this is the only brand they know of/carry, and it has extra vitamins and minerals for malabsorbtion conditions.

He also wants him to get 24 oz a day of it. None of them (Drs and nurses) seem to understand that 24 oz is a ridiculous amount to give by a small syringe -that 3 of the syringes equal ONE oz! (it's the only way we can get anything in him). Argh. He told me to lay off the antibiotic for now till he's better (he wasn't eating anything and I already stopped it two nights ago seeing as he wasn't drinking anything and that would only make his belly much worse.)

Please help. I'm just so scared of what we are doing (They also now want him to have an endoscopy real soon to check his esophagus/reflux, as well as the VCUG soon- both require full anesthesia and all before he's even 2!). That and I have had horrible incidences with Drs in the past and am really wary of most pediatric/ western practices today.

Does anyone know of a healthier alternative I can substitute his diet with (short of actual real food - we are working with occupational therapists trying to get him to eat solids). It is also so hard that he refuses any cups/sippys/straws, etc. (They want me to try a bottle again and if that doesn't work, forcing his mouth open & using the syringe like we have been.)
:0(
Kristen

[mamafish9]

I'm so sorry you're going through all of this. I can't speak to all your son's issues, but I can offer a couple of things.

First, breastmilk is PLENTY for an 18 month old. My son (who is autistic), ate very, very few solid foods until about 20 months old - and he's a big, thriving kid (he was 28lbs at 18 months, exclusively breastfed - and I have totally normal milk supply). So while getting him to grow is important, don't let them tell you the problem is that you can't make enough breastmilk to feed him. That's just not true.

Second, not growing is an issue a lot of people on this board face, as a result of food allergies and intolerances. If he is reacting to soy, and also to dairy, the first thing I would try is pulling gluten and corn (the other two top intolerance foods). Gluten in particular is well known for causing growth issues.

Also, kids with food allergies & intolerances often don't feel good when they eat - so they don't want to eat. Many find (we did) that once you get all the offending foods out of your diet, kids are willing to eat more foods.

If I were in your shoes, I'd remove the top 4 intolerances (dairy, gluten, soy, corn) right away. Give it a couple of weeks - if you aren't seeing signs of improvement, then you can pull more foods (the mamas here can help you figure that out).

You might also look into allergy testing - both IgE (allergy) and IgG (intolerance) testing. It's not always accurate, but it can often point you in the right direction. (Note that many allergists don't believe in IgG testing, but you can order it yourself - ALCAT or ELISA).

Also, since he's been on antibiotics, I'd look at a high quality probiotic for him - one without dairy, soy, or FOS (we use ones from customprobiotics.com, others like Pharmax brand).

Hang in there - I know the docs can put huge pressure on you, but trust your mama instincts. They were content to make you wait 3 months to see a doc, they can wait 3 months while you try removing foods and figuring out his food reactions.

[Momo123]

Hi, I'm so sorry to hear about your situation. You asked about an alternative to elemental formula (my DS is on Elecare which is like Neocate after my milk supply tanked from a variety of issues, and I was never able to find his food triggers after eliminating for months. I do wish I could still breastfeed, but it is what it is). Someone told me about a rice-based formula called Ultracare. Not organic or "natural" but doesn't have high fructose corn syrup at least. I haven't tried it yet.

For probiotics, I have tried Pharmax and am now trying Custom Probiotics infant formula. If you call the toll-free number on their Web site, you can by smaller amounts (I got 25g) so you can see if it works for you before committing to a large jar...

It is so difficult to see your baby suffering, but you are doing a great job. Best of luck!

[cowKIDmom]

Sure sorry to hear of your son's troubles.

I second the vote for allergy testing. We used Great Plains Lab and did blood allergy testing for IgE and IgG (allergies and intolerances) on our (then) 1 year old and 4 year old sons. It was a huge huge thing for our family; so worth the price.

Personally I wouldn't yet stop nursing.

Have you thought about supplementing with goats milk? Raw goats milk? I don't mean the stuff you can get at the store which is nasty and pasturized. Something to think about maybe. Goat milk has been amazing for our family (especially our gluten, cow dairy, soy and ect... allergic kids). You can check realmilk.com for anybody near you.

I agree with the OP that when kids are sick from allergies they often don't want to eat. That was the case with ours also. One son wouldn't eat anything not candy or cookies or anything for days on end on and off for years; it was terrible. So I would think after the offending problem was taken out of the equation that he would become more interested in things beyond nursing.

I also wonder if when you started supplementing if you sweetened what you were offering in the beginning to make it more appealing and then gradually took the sweetener away?

good luck, and don't let the drs. harrass you.

[cowKIDmom]

oh, and are you confident that your diet is completely soy free? Soy is in so so much, that it is hard. Same with dairy if you are going dairy free for your son. Even little tiny slip-ups can stay in the system for weeks.

[celticgypsy]

my diet WAS completely soy-free (I had a list of the hidden ones)...until my dad cooked with pam the other night when I ate over and I didn't realize it until half the food was eaten... :0/ he meant well.

I just got my raw goats milk today from a farm near me that was listed on the site you mentioned (real milk.com? just had a brain lapse sorry). I have found a homemade formula using goats milk that I am excited to try. I'll list my post from the other board here in just a minute... (good ol' copy & paste I can't write that all again, lol)

I'm just really pissed at my Dr today. They called MANY times and I told them my son is doing great, like his past episodes on day 5 he picks up and 6 he's back to normal (today was 5). Ian (my son) was walking -he still holds onto furniture/walls- all over the place, playing, talking (baby talk) and smiling a bit! His cheeks are getting color back though the dark circles are still there. His eyes are alert again, no fever, only 1 diahhrea and that was this morning. Still had a bit of a time to get him to nurse from afternoon-now though. Though he did try some cereal I had soaked in fat-fortified (using oils) rice milk (at the GI drs request) - and seemed to like it! (a miracle, he only tasted a little bit but this was so huge I started to cry). Anyway, he is SO much improved and I told the nurses that, but by the end of the workday today they called and said the Dr may want to admit him to the hospital tomorrow (he's going for a weight check) and to pack my things in case!!! What?! Sure, he's been slowly losing a little bit in the past couple of weeks, which we were hoping he'd pick up on solid foods, but only yesterday did the dr tell me to start supplementing. And Ian was sick, of course he'd lose a little! He always does -cause he doesn't eat- but then picks up. He is JUST getting over it (starting to)! I'm so angry I feel like I have no control over anything. And that if I don't go along with them they will claim I'm a bad parent and take my child away!!! (I'm already scared seeing as my son is non vaxed and I already have to fight that). I would NEVER do anything to hurt my son, and of course I am worried because of how tiny he is, but he is picking back up! I feel like they are all pushing at me (they called a few times today to make sure we were giving the neonate, which now I am lying to them and using my fortified goat milk formula, but I'm following my instincts! (unless, they are out of whack ....but I just feel like they are pushing, and I can give him the same (better) nutrition from natural sources.

Did those who used Goats milk see an improvement right away? I have no time to waste if this doesn't work fairly soon then I'll need to reevaluate and....maybe have to go with what they want (neonate) though my instincts say no.

[celticgypsy]

Here's my post from earlier today about the recipe:

I was up ALL last night (pulled an all-nighter researching) and have found their are NO commercial formulas that are hypoallergenic and NOT filled with crap, so I found lots of mommas/Grandmas who had similar situations with allergies/growth and had great success with making their own formulas from Raw Goat's Milk (making sure you are getting the milk from a clean, trustworthy farm - and I found quite a few near me I am checking out asap!) Since the tests for his dairy allergy came out negative, we still aren't sure whether he even has a dairy allergy. And from what I read it seemed that lots of babies who have a milk allergy can actually thrive on raw organic goat's milk, which is closest in consistency to human breastmilk. (Of course I'd fortify it with probiotics, fats, vitamins and minerals but all from natural sources.) The main recipe I'm finding is from The Weston Price Organization: http://www.westonaprice.org/Recipes-...y-Formula.html
Which I've found a slightly easier to make alternative that many have used with success that includes the following:
Raw Goat milk Formula (makes 36 oz):
2 cups raw goat milk
2 cups filtered water
1/4 cup liquid whey from goat yougurt or kefir
1-2 tsp organic blackstrap molasses
2 tsp organic brown rice syrup (in place of lactose, I'm not sure he can handle that)
1/4 tsp bifido bacterium (infant probiotic)
1/2 tsp high vitamin cod liver oil
1 tsp unrefined sunflower oil
1 tsp extra virgin olive oil
2 tsp virgin coconut oil
2 tsp nutritional yeast (for B vitamins, not sure if I want to use this yet because I think he may have a sensitivity to yeast as well, might replace with feeding extra foods in vit B pureeing/making them liquid)
1/4 tsp Now acerola powder (vitamin C) or amla

I spent most of the night comparing the neocate vitamins/minerals & their levels with that of homemade recipe(s) (lots of math....ack) and found them to be pretty much the same. SO, I'm not going to mention it to DR (because they'd freak out with raw milk/homemade stuff) but am going to give this a go, and am excited!

[LovnMyBoys]

I too was (am) absolutely terrified of Neocate ingredients. However I was down to five foods in my diet and my ds still was experiencing terrible symptoms and was FTT. Finally at 15 months I made the choice to switch him to Neocate. I finally got to see the happy energetic child that was missing. I don't look at the ingredient list anymore, and we are trying our best to get him off of it, but with only 5 safe foods at almost 3 we have a ways to go yet.
Our situation is different in the fact that he has an autoimmune allergic disease that has caused all of his issues, but honestly Neocate has been our saving grace.
We also eat organically/naturally here so it did seem like a jump, but I just wanted to share in case you do need to go that route. I totally agree with trying all other options first though!

[cowKIDmom]

my electric was out last night, so I just saw your posts.

I hope the weight check goes well today and DS doesn't end up in the hospital.

Glad you found some raw goat milk. Can I ask what state you are in? We are in Colorado. Wish we could help you.

Drs. are not (usually) understanding about raw milk. Our ped. knows that we use goat milk (because he is the one that signed for the allergy testing with great plains and thus also has the results and knows we have dairy allergies) but he doesn't know or has never asked if we pasteurize. which we don't.

Now this is strictly my opinion, but with my kids, I would/do choose to give it to them straight and not with anything else mixed in with it. When I started my very sick, allergic to everything son on it years ago I did not mix anything in it and still do not. My son (one of them) spent 4 years with those dark circles under his eyes and very sick. The first thing I did was pull all foods away. I would be nervous to be putting some of those things in the milk until you can more pinpoint exactly the problem. For instance, the coconut and sunflower. My more allergic son( more allergic than my other three) is very allergic to both of those, but especially sunflower. But I would have never been able to tell that w/o the testing and had it been in the goat milk I might have thought it was the goat milk itself. Know what I mean? I also wouldn't be adding in water... but again... that is MY opinion. Goat milk is normally a little bit constipating (like cow milk is also), which might be good for your son with the bouts of diarrhea.

My more allergic son also deals with autoimmune diseases as do I. I think it is all so related and intertwined really.
And just a reminder that most things can stay in your body for up to two weeks. So it will take time to get your body and his body cleared of possible allergens and be able to start over again adding things in. and know better what the reactions are from and how he is doing with the goat milk.
Goat milk is high in fat and protein and I wouldn't even worry about giving anything besides that and all he wants from you right now. Again, just my opinion.
This is all just what I think and would do, and only offer it to you for suggestion and in the kindest way from one mom with sick/allergic kids to another. Everybody's situation is a little different and every mom/dad has to decide what is best for themselves.

I am fighting this road again with our youngest who is 9.5 months right now.

[blessedwithboys]

his current size isnt the issue, its the weight loss that is scary. BM should be more than enough for the average 18 mo. if you want to add more calories, i would maybe try raw goat milk.

have you considered an OT eval to see if his refusal to take a cup is sensory based? maybe your LO might benefit from feeding therapy?

i wouldnt do that neocate stuff either. my ds1 was dx FTT and rx'ed pediasure, whcih i gave bc i wasnt all that crunchy at the time. it didnt put a single ounce on his bony frame, but then again, he wasnt as bad as you describe for your LO. i think it was just his ped going by the formula growth charts.

best wishes to you and your LO!

[rhesp1212]

I totally agree with what everyone else said above. I also agree that I would just do straight goat's milk atleast for a while to make sure he is tolerating it okay before adding other things into it. My son, like someone else's, is highly sensative to coconut, and all oils other than olive oil. Course, he also reacts to goat's milk too!

i wanted to throw something else out there as well. I noticed that you said he has episodes every 21 days. That seems very cyclic and would be odd to be food related unless you only eat certain things on certain days.....have your cycles returned?? If so, it's possible that he could be reacting to the hormone shifts in your body that is reflected in your BM. My son's reflux always flared up really badly just before my periods due to the changes in my BM.

Also, even though some kids thrive on Neocate....mine actually reacted horribly to it as he's severely corn intolerant and possibly allergic, as well as to the oils they use in it. So, definitely go with your gut on that one.

Good luck and please keep us posted!! Sending some prayers your way!!
Valerie

[WuWei]

Heading to bed, haven't read everything, will recheck this tread tomorrow. But, you must be certain to get adequate food folate with goat's milk infant formula. Greens, beans, legumes and liver are whole food folate sources.

Also, bifidum for infants. And some whole food probiotics. Do you have REAL kefir grains? I can send you some.

Fermented cod liver oil from green pastures.

Also, (raw) pastured egg yolk.

And an sodium ascorbate source.

What about vit D?

And iodine?


Pat

[celticgypsy]

Just got back from 5 days in the children's hospital a few days ago, sadly that is how we spent Easter weekend :0(
What an exhausting, frustrating experience. HOWEVER, we did get a few answers. They put my son on an NG (nose) tube with a constant drip of neocate when we first got there (they wanted to do a dairy-based one, but fortunately I caught that and said NO!). He was deemed malnourished, as all he was eating was Breastmilk and after 12months of age that is not enough (according to them, though I think I agree with them now because it was right around then that his growth STOPPED). We know there was nothing else going on because he could take the calories and gained 2 lbs while we were there! They wanted to do all these big tests at once, which I was extremely nervous about having my son put under anesthesia that many times in one weekend, so we weren't going to do the MRI....until the Dr came back in and told us she felt that was the most critical test as they were afraid of a brain tumor. (they didn't want to scare us, and left that info out before) SO...we did it, and -Thank God- Ian does not have one, BUT they found a secondary finding...a "growth" on his pineal gland. After many drs giving us their interpretation (the "right" dr was not there on easter weekend and we heard many different-and scary-opinions) finally the pedi neurosurgeon and another onc dr thought it was something not to be too concerned about (could be just a harmless cyst) and not related to any of his problems but we will just watch it, and he'll go for another MRI in 3-6 months. Besides that, he went for an endoscopy (which was normal -no reflux or celiac disease), and he had the VCUG which determined he DOES have urethral reflux (a grade 2 in one ureter, grade 3 in the other), which very well could be the cause of his "episodes" and he will stay on a low-dose antibiotic (poor guy) to prevent outbreaks until he outgrows it (he has a 50-75% chance of it going away on its own) or he'll need surgery to correct it. He goes for another VCUG around age 3. As for his feeding aversion...he gained well on the neocate, and I was still able to breastfeed. He won't accept cups/bottles at all so we came home with the NG tube in his nose still and will probably re-evaluate tuesday when he sees the GI Dr. I am so scared of the G (stomach tube) which would require surgery (and anesthesia) again. I don't want him under anesthesia again till he's over age 2 at least, if I can help it! Any ideas on getting him to accept a bottle or cup?
The feeding, etc was deemed behavioral (which I guessed), and he has an overactive gag. The Dr told us to work past the gag, and when we changed the subject when the gagging started, he stopped! He has now gagged less and less since we've been home. We found ONE food he actively eats - veggie stix! LOL, not the best food, but we were just thrilled he's eating! He has a great bite/chewing, so it appears a slight texture problem...he loves the crunchy stix but when they get soggy he pulls them out. He won't touch pureed or baby food. As for drinking...he took a few sips when we left the sippy around :0) It's a start. I think he's doing so much better now that he has the extra calories. He's happier, energetic, and starting to try more foods! It's just exhausting our routine now that we're home - breastfeeding still, encouraging him to eat meals 3 x day, as well as his feeds through the NG tube that I have to do manually 3xday that take him sitting still for 20-30 minutes at a time. Basically I'm feeding him every hour. I'm trying to stay positive, but it is soo difficult and now today he has a rash- which the nurse deemed the start of a yeast infection (great! what else now?!) ...I really don't want to use the antifungal drug-cream they suggest - and have been looking up natural alternatives- but is it too late for those?

I still want to do the Goat milk - but am having an extremely hard time finding anyone near me that DOES NOT feed their goats soy grain! I figure if my son reacts to the soy in my diet, wouldn't it be the same drinking the goat milk? I am desperate to find someone that doesn't feed their goats soy, but at this point I feel that it might be impossible :0( I really don't want to use the neocate, though my son is tolerating it well.
We are working with his OT on the feeding, as well as feeding specialists the hospital referred us to, and a home nurse is coming twice a week to weigh Ian and check on us. Between all his appointments (GI, pedi, Urologist, allergist) and the home nurse visits, OT appointments, etc I feel that we practically live at the Drs (and when we are home, they are here!) And I cant stand Drs in general (and felt like a caged bird the entire time in the hospital)...I shy away from western medicine in general. But I am glad we got answers and seem to be on the right track. Now I feel I just have to hide the "goat milk" etc from everyone -drs, nurses- which is hard because now we have no privacy. They also want to feed him "junk" just to get him to eat, because it "tastes good". NO! I can't wait until he picks up and we can have some privacy again. He IS doing so much better and improving in a matter of days. I just hope I can get him to take a cup because I really don't want him to have to have a G tube...
It is a good thing I'm not working right now, because feeding him has been more than a full time job and I am trying SO hard not to get really discouraged.

[WuWei]

Check out this thread with links to many prior discussions about VCUG.
http://www.mothering.com/discussions...g#post13567720


I would encourage extended nursing and whole food probiotics.

"probiotics prophylaxis was as effective as antibiotic prophylaxis in children with persistent primary VUR. " http://www.springerlink.com/content/1741p5k22284x265/


Steroid/antifungal alternatives.


Water kefir ASAP.
Bubbies sauerkraut juice orally to improve stomach acid. PLEASE tell me they did NOT put him on antacids?!

There is no health reason not to offer goat's milk. Why would that need to be secret?

What about green smoothies? You can make up homemade infant formula and put it down the NG tube as easily as commercial formula or breastmilk (ideal).

Bone broth, cod liver oil, bifidum probiotics, water kefir, coconut oil all help to heal the gut from unnecessary antibiotics and to correct candida overgrowth.


Pat

[Koalamom]

Hugs mama! I am really thinking of you as I have gone though alot with my ids and my 8 month old has had weight issues due to having lyme disease. We are non stop nursing to keep his weight up, my life revolves around my kid. As moms we just got to take it one day at a time.

Just some thoughts- How is your milk supply? Are you drinking enough and eating enough, especially fats? Have you tried herbs like fenugreek or nettles to help boost suppply?

About the soy in the goats feed, hat could be a concern. My son is so sensitive that it the feed includes soy, he reacts. How did your LO do with it, as that will tell you? All dairy is 9out for us, be we really need the fats for weight gain, so the only things that is ok for us is Kerrygold butter (all grass fed cows), made into ghee so it is easy to digest. I put this in everything and no dairy reactions at all and we are seeing weight gain with it.

Since your son is on abx, I would for sure get some water kefir right away. The abx can mess with the gut thus making nutrient absorption difficult. So add good stuff back with the water kefir. Very easy and cheap to make and all you need is like a teaspoon to tablespoon for a kid.

Another thing that has helped with my sons weight gain is adding in brewers yeast(not nutritional yeast), as it is a great source of b vitamins. Inositol has also really helped at healing and weight gain. These things I take and then breastfeed. Also making sure I get enough folic acid, only through food sources. I eat a cup of lentils everyday and have a green smoothie (which kids love too) and or a salad, AND a bowl of lightly steamed greens. These things alone (including the grass fed ghee) have helped with my sons satisfaction and weight gain.

Has weight gain been an issue his whole life? And have you ever considered lyme as a culprit? Have you ever been bitten by a tick? Seriously I would consider lyme as a cause.

[celticgypsy]

Thanks for all the info! I would love an alternative VUR treatment besides antibx, but am so afraid his sick episodes would return... and those are terrible! I am definitely looking into it though, thanks so much!
(I also think the DRs would have a fit if I didn't do the "normal" treatment, and would probably treat me as unfit to be a mother. They check on us a few times a week, and it feels like I have no privacy anymore)

As for water kefir...what is it (lol) and how would I make it?

Also, I am looking into probiotics, but am confused by what my son would need. Some sites say 10 plus billion cells are needed to be effective at all (especially w/yeast) but most probiotics only have 1 billion, and I am concerned that any more wouldn't be safe for an 18 mo old. Also, which strains exactly would be most beneficial for him? I read S. Boulardi is resistant to antibx. I am having a hard time finding a probiotic -that is dairy/soy free- that contains bifido, lactobacillus, acidophillus, etc - is rhamous (sp?) important for him to have as well?

Oh my. Between probiotic research, trying to find non-soy grain fed goatmilk, and yeast infection treatment alternatives - I am getting so overwhelmed!

[rhesp1212]

Water kefir is very very easy!! It's a natural non-dairy probiotic drink. It's basically like milk kefir that you can buy in the stores, except it's made with a sugar water. The bacteria and yeast eat up the sugar and produce a slightly fizzy drink similiar to a soda. You can make it with plain sugar of any kind and water. All you need are water kefir grains, water and sugar (or some other equivilant...I use maple syrup for my son because he doesn't tolerate cane sugar). I have a TON of water kefir grains available.... If you'd like I would be more than happy to mail you some.

My son drinks this on a daily basis....he is also extremely sensative to dairy and soy, and I have not been able to find a store bought probioitic that he can tolerate. But, he tolerates the water kefir wonderfully!!!

Let me know if you want me to send some to you and I can send instructions too. It only takes 24-48 hours to make, and our whole family drinks it.

Valerie

[SARA777]

Neocate or Elecare

JUST STICK WITH IT UNTIL HIS WEIGHT IS BACK UP - that's just my opinion. Better than continue to starve your son while you experiment.

The chances for his overall health to improve with these amino acid based formulas is higher than experimenting on him while he's in such a delicate state. In fact, AFTER he's gained weight and gotten healthier all around, the chances for trialing new foods with more success would probably be higher, I should think....

It's just my opinion that you experiment and trial away AFTER he's got his health and weight back up. 90% of brain growth occurs before age 2. And, he needs calories to grow his brain. 17 lbs is scary to me at 18 months. Is his head size growing?

Anyway, just my opinion - i really think you should stick with the neocate/elecare until his weight is up to at least 10 %-ile. Just my opinion. All this natural stuff is great, but at this point, it really sounds like you don't have the wiggle room to be experimenting when he's basically starving himself due to whatever allergy/illness/behavioral/etc.

Hugs.

[WuWei]

That presumes that elemental amino acids are more nutrient-dense than whole foods.

It sounds like a sensory issue or perhaps a tongue-tie sucking issue. Have you had a lactation consultation to extensively evaluate for anterior and posterior tongue-tie?

Whole food formula has amino acids, carbohydrates, fats, fatty acids, proteins, vitamins, minerals and phytonutrients, macronutrients, micronutrients, enzymes, prebiotics, probiotics, fiber, bioflavonoids, isoflavaonoids, antioxidants, carotenoids, etc.
http://whfoods.org/nutrientstoc.php
http://tuberose.com/Antioxidants.html

Are you pumping breastmilk for baby? That is another ideal source of nutrition, to supplement beyond what he can physically nurse.

Pat

[celticgypsy]

I had him on the neocate for the 9 days while I researched to make sure that the natural formula would equal to the neocate (or exceed) it in calories, fat and vitamins/minerals. Instead of the 12-16 oz a day of neocate, he gets 18 oz of goat milk formula to equal that. The purpose of the formula is to replace the solid foods that he is not getting at his age, while I continue breastfeeding. They even wanted to just have him on solids when we left the hospital (no supplement), but I insisted he wasn't eating enough/wouldn't pick up eating THAT quick and still needs it. I think whole milk fortified with other ingredients/foods are a much better way for his body to get what it needs (and absorb nutrients better from whole foods rather than artificial ones that aren't fully used by the body). I started the goat milk yesterday, and so far so good! He had a wonderful (more solid) bowel movement today and seemed to sleep better sunday night. He is energetic and happy for the most part now. Of course it is still to early to tell but it seems like he tolerates the goat milk just fine :0) I am watching him very closely and writing everything down.

We have the nurse that comes twice a week now to weigh him, and tomorrow is his GI appointment -where we will discuss where to go from there. I have no idea what they'll say with the nose tube- he doesn't eat enough solids yet (it's only been a week) to do without it. Though his eating HAS picked up - we've been working hard at it (it seems like he's in his highchair all day long), and he started drinking from his sippy!

His OT came this afternoon, and we noticed something. It appears that what we thought was a texture issue may be an input/tongue/swallow problem. He likes the crunchy textures/strong tastes because he needs the extra sensory input. His tongue doesn't seem to know what to do with food that doesn't instantly dissolve (like the veggie stix he loves) and when he took water from his sippy he ends up coughing (eyes watering, etc) as if it went down the wrong way...

When he was in the hospital, he gained almost 2 lbs (up to almost 19 lbs) then a few days later at home he was up 4 or so oz. Tomorrow I hope he is up more, and if at worst his weight levels off and doesn't seem to be picking up fast enough, I will have the neocate as a back-up. I just don't see how neocate could be superior to real food, when most of it's ingredients are not far off from poison.

The nurse and Drs said we caught this at just the right time, and he should catch right up and not have any long term damage from this (or be short/small for life), thank Goodness. They said it would be more of a concern if he was closer to his third birthday and still not really growing. He is very bright for his age, and is only behind in gross motor skills (walking, etc) and feeding, but we believe a lot of that was due to being sick so often, and now that he's feeling better he's already making huge improvements!

I just am trying not to beat myself up for letting it get to this point. :0( I guess I (and our drs) kept thinking he was just stubborn (which he is) and would pick right up. But it never did....and couldn't go on like that. I just didn't know how to get anywhere with him refusing food, and I was too afraid to push it because his gagging scared me and I thought he'd choke. And it seemed like we were always waiting months to see the Drs though I did what I could to move up his appointments. At least now that we're in we can get seen right away.