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

[infraread]

Poor babe

I'm sorry I don't have any advice, but I didn't want to read and not post. Have you posted in the allergy sub-forum? They're someone there may have words of wisdom for you.

[PGTlatte]

I would also suggest the allergy forum....I found other threads there regarding neocate, and you will probably find others there with experience having their child on an elemental formula.

I have no personal experience with any of these formulas, but I have spent time in various allergy forums due to my own child's food allergies. I agree the ingredients sound gross but I have seen many posts about children getting much better on an elemental formula, because the allergens, which had not yet been specifially identified, were removed from their diet. It may be worth considering as a temporary measure, and then add other foods in one at a time.

Also, with breastfeeding an allergic child, everything you get, he gets. This I do know from personal experience - our DS1 was very allergic to dairy and eggs, and he would react quickly after nursing if I had consumed any part of either of these foods. We knew about his allergens from allergy testing. But when you don't know what part of your diet your child may be reacting to, it's hard to know what to eliminate. I have read stories of nursing moms who put themselves on very restricted diets, or even exclusively on elemental formula, to be able to breastfeed their allergic child without introducing allergens through their breast milk.

[LVale]

I say get your son to another Dr. asap. No reputable Dr. would have a child on an antibiotic for that long. Bactrim is a sulfa drug and a lot of people are allergic to it. This is a UTI. Please get a second opinion , this is not right at all, but this is my opinion.

[sbgrace]

He could have a secondary infection from the antibiotic. I'd want a stool culture. If you can find someone to do metametrix stool do it. It will tell you a lot about what's going on in there. If you can get urine testing too do that given the lethargy. But stool would be paramount for me in your situation if I at all could.

If he has a disease like EOS (I suspect they are scoping with that in mind/hope) then he may well need the formula to heal. That said, you wouldn't go on a hypoallergenic formula and then scope! You want to see what is happening now, when he might be reacting. This is important (something we didn't do with my son--we waited and removed allergens--we shouldn't have done that). I do think he likely needs the test. (We did scope my son at your son's age and I do understand a lot of your fear and concern and all).

I think some nursing moms have drunk the stuff themselves (I don't know how they did it/ick) and nursed.

You may well see huge improvement on the formula. He sounds sort of critical (in a failure to thrive increasing lethargy, this will only get worse without intervention/change way).

Won't swallow more than a minimum amount was due to reflux here. If he will not take in enough calories by mouth you're going to have to do other things/you're seeing the effects of that now. I hope the formula or other changes you make (reflux medication for example dosed according to marci kids site if it's non-EOS reflux) will help him take in more.

Side note: My failure to thrive increasing lethargy child had a metabolic/mitochondrial condition. But we weren't dealing with allergies and he had lowish muscle tone. Still, mito and gastro stuff go together so I wanted to mention it. More likely he's malnourished (been there) and is simply in a calorie/energy crisis.

[pacificbliss]

I would see another Dr if possible. 3 months is a ridculous amount of time to stay on an antibiotic for a UTI. I have never heard of a stiff neck with a UTI. Meningitis is the first thing most peds would test with fever and a stiff neck.

I hope you get some answers soon.

[celticgypsy]

The 3 months on Bactrim was mainly because both him (the Pedi Gastroenterologist) and the Urologist are pretty certain it is in fact Vesicourethral reflux (reflux from inflected urine into the kidneys), and the VCUG test will tell us for certain. His urine catheter sample came out infected and it is unusual for boys to have uti's so they think it's that. If he does have that, he will have to stay on an antibiotic until he grows out of it (in approx 3-5 YEARS) or have it surgically corrected, though most outgrow it (the gastro's daughter had this). He'd have to stay on the antibiotic in order to "protect the kidneys from damage from infected urine". Though his kidney ultrasound showed he had no damage so far)...and the stiff neck seemed to baffle them all.

[workjw]

DD was on abx for 2 yrs b/c of kidney reflux, so it's not uncommon to be on an abx for months or years (assuming that it is a low dose of abx) to prevent UTI.

Did they do another culture to rule out UTI again? Obviously it could be a number of things (allergy, infection, etc) but it could still all be related to kidney reflux. DD has reflux, so I'm on a number of reflux boards and there are a some children whose main issue was FTT before they discovered reflux. High grade reflux can cause all of the symptoms that you have described, and too be honest I would push for the VCUG, especially since you weren't seeing these symptoms while on the abx. To me that's a big red flag for VUR (kidney reflux).

DD cycled through infections, and during infections she lost weight, was uncomfortable and irritable. While on abx she gained weight, and grew well. I'm not advocating for abx (we actually fought for a long time to get dd off of them after her second surgery) but I am encouraging you to do the testing. Do you have a urologist or nephrologist? I would definitely want to keep them in the loop.

As for the VCUG, it doesn't require anesthesia at all (unless they are doing both procedures at once maybe?). There are some hospitals that will give sedation for a nuclear scan, but it's not recommended for the first VCUG so that the grade can be determined. Treatment is based on grade, so you really don't want to do it under sedation b/c you need the bladder to work properly. DD had 2 VCUGs before her first birthday, and while they were uncomfortable, it's a pretty short test, and is the only thing that can determine reflux. Have you had any other testing like a renal ultrasound?

I hope that you can find answers soon!

eta: We posted at the same time, so I see you have a uro and have done the u/s. It's good that the u/s didn't show any problems because it will usually show any significant scarring, but it doesn't mean that reflux isn't present or causing a problem. DD has reflux in 4 ureters (she has 2 extras) and we've never seen a problem (or the extra ureters!) on u/s.

[celticgypsy]

workjw- that was actually another question I had to post another time, lol! We have the option of "pain-free" sedation during the VCUG, and ALL the Drs are pushing it. They said it would make the event less traumatizing, and less radiation exposure (and we won't have to risk coming back and doing it again/more exposure if they can't get it done if we choose w/out). For his age and being a boy they are pushing me for it. (Almost to the point where they are actually pushing me in the other direction! lol. They said most hospitals don't offer sedation for this test but here at the Children's Hospital they have that "wonderful" service available and most people choose that so they can't tell me what it will be like for a toddler w/out sedation. Grrr) I asked all my Qs from the anesthesiologist, radiologist, and my Drs. What is the probability (do you think) of it being successful w/out sedation? (they said if he moves too much and they can't get it we will have to reschedule and do it again). How was it for your daughter?

[csekywithlove]

I couldn't read this and not post. I hope things are getting better. I understand how frustrating it is when they can't eat. DSS had a pyloric stenosis at four weeks old and dropped four lbs before he was correctly diagnosed and could have the surgery.

Keep us posted and I guess my main advice would be to have the BEST doctors and to not hesitate to get a second opinion.

[SquishyKitty]

I would definitely go for the pain-free sedation. You will be there with him while he is put under, and when he's coming out of it you should be there with him, and he won't remember any of it. Just going to sleep, and waking back up.

I hope you are able to get some answers.

Can you get some dairy free probiotics into his system? I wouldn't worry so much about the additives in the Neocate at this point, truthfully the extra sugar might help him gain a little weight. Not ideal, but this sounds like a situation where it's the easiest solution.

[workjw]

Originally Posted by celticgypsy

workjw- that was actually another question I had to post another time, lol! We have the option of "pain-free" sedation during the VCUG, and ALL the Drs are pushing it. They said it would make the event less traumatizing, and less radiation exposure (and we won't have to risk coming back and doing it again/more exposure if they can't get it done if we choose w/out). For his age and being a boy they are pushing me for it. (Almost to the point where they are actually pushing me in the other direction! lol. They said most hospitals don't offer sedation for this test but here at the Children's Hospital they have that "wonderful" service available and most people choose that so they can't tell me what it will be like for a toddler w/out sedation. Grrr) I asked all my Qs from the anesthesiologist, radiologist, and my Drs. What is the probability (do you think) of it being successful w/out sedation? (they said if he moves too much and they can't get it we will have to reschedule and do it again). How was it for your daughter?

It really depends on the kiddo I guess. We've avoided sedation for all of dd's tests and she has always done really well, and we've never had any problems. BUT we discovered her VUR (which is more complicated than most) when she was 6 wks old, so she is very used to doctors and procedures. Too be honest, I've never heard of anyone having to re-do the VCUG, and like you said, most hospitals don't have the option of sedation (at least for the initial test). I know some that have had trouble with it, but in the end they have always gotten the pictures that they needed.

If your ds did really well with the catheter, he will probably do ok for this test since it's kind of like a reverse catheter. They insert the catheter and inject a solution into the bladder. Then they watch to see where the solution goes through 2 voiding cycles. They are looking to see if the solution stays in the bladder or moves into the ureters or kidneys. The test takes about 20 mins.

I will say that most of the members in my VUR groups would probably opt for sedation (I'm assuming they will use something like versed?). If you feel like he will do better with the sedation, go for it, but if you're uncomfortable with it, I think you will be fine without it. Either way, you should definitely contact your child life services at the hospital. They are amazing at calming and entertaining kiddos, and really helpful at getting you through the testing. We've used them for all of dd's testing and I really can't say enough good things about them.

Good luck and keep us posted!

[celticgypsy]

Has anyone ever made their own homemade formula? 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! He's doing better today ate normally and has color in his cheeks, was playing around and making a mess :0) still had green mucousy diahhrea though but this was normally how his "episode" would pan out...he'd pick up day 5 and day 6 be back to normal.

Drs called this morning and wants to do a weight check tomorrow. I'll let you know how that goes. They think I'm starting on neocate today - and I absolutely HATE having to lie, but I have to go with my gut instincts at this point and I'd know they'd disapprove. If the proof is in the pudding eventually, then I'll let them know.

workjw - the sedation would be a laughing gas first (forget what exactly, I have it written somewhere) then he'd be put under with Propofol. (sp?)

[sbgrace]

If you're dealing with allergies/EOS you can't, imo, do a homemade formula. The one you listed for example has dairy and rice and sunflower (a seed, an unrefined at that), coconut, olive. You've got a load of potential allergens there (worst is the goat dairy likely though my son is sunflower allergic). Refined oils will be less allergenic than the cold pressed/virgin/unrefined.

However, if it's all the urinary it might work if he didn't develop an allergy to something in the formula. And since I think it's silly to pull allergens and then scope for EOS I guess it doesn't matter. He still has to drink enough to take in the proper amount of calories (a little more math would tell you how much). My son would drink if we picked him up mostly asleep in the middle of the night. Most of his calories at that age were sleep feeds. That may be something only reflux kids do but worth a try.

I'd focus on figuring out what you've got first via testing and doing whatever I could (medical formula or whatever) to get enough calories in him so that he's out of this danger spiral he seems to be in (lethargy, which we saw in my son, really concerns me even more than the numbers on the scale). Then make your decisions.

[wendinbill]

I don't have any advice, but wanted to send you good thoughts for your little one.

[cheryllynn]

I have looked at making my own formula as I was waiting to receive donor breast milk. I was successful in receiving donor breast milk, so I didn't have to make the homemade formula.

I too am near a goat farm and am looking forward to introducing raw goat milk as soon as we can make it out to the farm.

We are not dealing with any known allergies, but I too was trying to find some kind of organic dairy & soy free formula and was disappointed not to find one. For my personal use, I have a rice-based protein powder, so I know someone can do it somewhere.

One question I had, if your DS won't take a bottle/cup/straw, how is he supposed to drink the formula?

Outside of what I've read in the posts, have you tried enzymes and probiotics? Both of these can help with digestion and after so many months on antibiotics, I don't know how much if any good bacteria is left in his digestive system.

[claddaghmom]

If he has allergies, at least dairy/soy and perhaps some unknown, then how are you introducing solids? DD has presented with a sensitivity to dairy and it is in EVERYTHING. It's amazing where you can find that stuff...heck they even have casein protein in vaccines!

I wonder if you can analyze your diet and remove dairy/soy, plus beef up your caloric and nutrient intake.