UPDATED I'm at a complete loss - I cant figure out what's wrong with DS (long)

So if you've been following my posts lastely you already know DS has reflux and a milk allergy. He was on zantac and then switched to Prevacid. He seemed to be doing better. He started projectile vomiting from the Alimentum so we switched to soy last Sunday. Since Sunday things have only gotten worse. He stopped vommiting, but he's super constipated (he's going but its dry and hard and he cries while he's pooping). He used to sleep 4 hours striaght and lately he's BARELY sleeping 2 hours at a clip, waking up screaming, he's fussy ALL the time, he'll cry for over an hour straight..and I mean screaming bloody murder...nothing soothes him.

He's crying through his feedings. He's starving but he takes a few sucks and starts screaming. I can barely get 2 oz. into him (he normally eats between 3 and 4oz.). Last night I got him to eat 2oz and then he promptly threw it all up. followed by another hour of screaming. Its taking an hour to get him to eat only a few ounces. He'll scream these high-pitched screams during feedings and even sometimes afterwards. He's SO fidgety during feedings - squirming, flailing his arms, grabbing at his face and the bottle, stiffenning or kicking his legs... its impossible to get him to settle down.

I dont know anymore if this is the reflux or an allergy to soy. If its his reflux, he's already on prevacid, so I dont know what else we can do?? I keep him upright after feedings, sleep himon his sides, burp every ounce....
I'm at a complete loss right now. I feel like a terrible mother because at times I feel like I just cant do this anymore. He gets worse everyday. Now all of a sudden he isnt taking the nipple correctly (the same type of nipple he's been using since day 1) so he's taking in too much air or too much formula at once. I literally sobbed through his whole 4am feeding last night because I just cant take it anymore Everyday its some new problem or it worsens and I'm getting NO SLEEP because he wont sleep. He just fusses or screams when he's put down. Or he's dead asleep for all of 20 minutes and then wakes up crying again.

I've spoken to my Ped about seeing a Ped GI Specialist and every week when I go see her she tells me "lets wait til next thursday" or "lets see how he does until next week". Even when I told her I think he needs to switch to a prescirption formula she told me to keep him on the soy for another week. How much longer do we wait?? The poor child is in constant pain or sick and I cant handle anymore. I'm basically a single mom since my DH is deployed and I feel like this is really starting to take its toll on me

Based on his symptoms i really dont know what we're dealing with here. Is it the reflux? a milk and soy allergy? Both?? I need some guidance

UPDATE:
Thank you all for your responses. I called the Peds office and spoke with the doctor on call there. She asked me to come in and talk. I went in and we discussed all his symptoms and his records. She was FURIOUS that the other doctor hadnt gotten us into the GI specialist yet -- she said he should have been seeing one weeks ago. She gave me the referral right there in the office
She also gave me 3 sample cans of Elecare to hold us off til Monday when she can call the insurance company. She said it sounds like his reflux is really bad and since he's not eating much now, she wants to see him monday to check his weight gain. She was really pro-active and sooo nice. I'm still very worried about him and he's still crying a lot, but I feel better knowing this ped is taking it really seriously and was so great with us today!

I also grabbed rice cereal that's soy free to add to his bottles and switched to Avent bottles from the playtex drop-ins since he was having trouble with those.

Now its just a waiting game until we see the GI.

Message edited 9/12/2009 9:04:59 PM.

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

I dont have much experience with reflux and allergies, but I think its time the ped. stops dragging her feet.

Tell her you want him to see a GI specialist and don't let her say no, or find a new doctor.

Wish I could be more helpful!

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

I'm sorry you are going through this. I would also insist that you make the appointment for the specialist. I don't know how long this is going on, but it sounds like its dragging on and you poor ds is suffering.

I'm sorry I have no idea if it sounds like an allergy or something else.

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

Most babies that have a dairy allergy have a soy allergy as well..I believe it's 60%.

When I went thru this with DS, his ped put him on soy too, and he was a mess. The Ped GI said she should not have done that because most dairy allergies are allergic to soy as well.

We tried everything..allimentum, soy, good start, enfamil lipil AR...he hated everything. So I went dairy free and continued breast feeding, and he's been fine ever since. (and we switched peds lol..i did not think she knew what she was doing..with this and other things).

Anyway, as your ped about neocate or elecare if nothing else is working. HTH

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

I think you should FM prncsslechar. I am pretty sure her DD was allergic to both soy and milk protein and maybe she can give you some guidance.

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

I have similiar issues as well. Our daughters (almost 4 months) were on Similac advance and one was spitting up/vomiting and the other was fussy with arching the back and stiffness. both would cry during feedings and stopped taking a full bottle. I kept calling ped and finally said to her i think maybe we should try zantac or switch formulas. She gave us zantac and i did that for a week. they hated it and i didn't notice a difference. So I called ped again and she said lets try soy. So now they are on soy. Right away I noticed a difference they were not spitting up and they were eating full bottles. Now we are at 2 weeks with soy and now they are back to the same - spitting up, crying while eating, extreme gas pains and super fussiness and no longer sleeping (which could be teething - they have 2 teeth coming in). So now I feel like I am back to square 1 and am going to call the ped again monday. Hopefully she will have a solution, I would like to see if they have an allergy.

Keep insisting about the specialist and I hope DS gets better.

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

I am sorry you are going through this. DD was colicky and I literally thought I would lose my mind at times. She wasn't half as bad as what you just described so I send you many mnay hugs! You are not a bad mother..so get that thought out of your head.

As far as your ped, DEMAND that an appt with a specialist is made. Tell him or her that YOU as a mother know when something is not right and you can't go another day knowing that your son is in pain. If she says, "lets wait until next week" tell her you want the # to the specialist otherwise you will find one on your own and then you may want to look into a new PED. There is no way that you should continue to wait week after week. My cousin is going through something similiar and after a week on Nutramigen, he was still having the same symptons and then next day she was at the specialist (her ped made the appt).

I know it seems like things will neverget better,,but please believe me when I say that the do get better. There will come a time when you wont even remember what the past few weeks have been like.

If you need to, place him down in his crib and step outside for a minute or two.

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

Posted by HomeIsWithU

Posted by JChia

I'm sorry you are going through this. I would also insist that you make the appointment for the specialist. I don't know how long this is going on, but it sounds like its dragging on and you poor ds is suffering.

I'm sorry I have no idea if it sounds like an allergy or something else.

Thanks. He's 6 weeks old and we're been seeing the Ped about this issue since he was 2 weeks old - so its been going on for about a month already

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

You need to see a gastro doc. and i dont think you should care what the ped. says. if you dont need a referral with your insurance make an appointment.

My DS was and sometimes is still like your DS. He has been on Elecare since 3 weeks old (since they found blood in his poops). He as all kinds of tests done, but after a few weeks the finally tested negative for blood. The gastro doc. also made me eliminate any soy in his diet. I was thickening his bottles with gerber cereal and I was told not to anymore because Gerber has soy in it.

I really think you should be firm with the ped. and seek a specialist. My DS sees a pediatric gastro doc in babylon. I like him and everytime i have a question he calls back (he calls back...not the nurse, which I like).

Sorry you are going throught his because I know what it is like.

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

Posted by Sweets13
I know it seems like things will neverget better,,but please believe me when I say that the do get better. There will come a time when you wont even remember what the past few weeks have been like.

If you need to, place him down in his crib and step outside for a minute or two.

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

I would just make the appointment with the GI. I and many other parents have learned that you have to trust yourself and be your child's advocate. If you want to see a GI then you don't need permission. If you need a referal because of insurance just tell the doctor you want a referal. It sounds like you need to seek a specialist at this point, even just to put your mind at ease.

Good luck.

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

I don't have any experience with this, but just wanted to offer tons of . I hope he feels better soon!!!

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

I would make an appt with a ped. gastro. We use Dr Gold in Babylon---he is great. My son had the same thing...was on prevacid, and was put on Nutramigen, but still was having sleeping issues, eating issues...he was constantly in my arms...I would have to hold him facing out, so his belly was resting on my arm.

Anyway, turns out that even on Nutramigen, he still had blood in his stool...nutramigen still has milk in it, just more broken down than regular formula. So we went to Elecare.

My son was allergic to soy....many babies that are allergic to milk are allergic to soy...I would try to get in to a ped gastro ASAP. They test for blood right there, and can guide you from there.

Please don't get down on yourself. I know how hard it is when you don't know what to do to help you baby, and how hard it is to not get sleep

If you have any questions, please FM me. Sounds like you are going through what I went through

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

Posted by want2beamom

I would make an appt with a ped. gastro. We use Dr Gold in Babylon---he is great. My son had the same thing...was on prevacid, and was put on Nutramigen, but still was having sleeping issues, eating issues...he was constantly in my arms...I would have to hold him facing out, so his belly was resting on my arm.

Anyway, turns out that even on Nutramigen, he still had blood in his stool...nutramigen still has milk in it, just more broken down than regular formula. So we went to Elecare.

My son was allergic to soy....many babies that are allergic to milk are allergic to soy...I would try to get in to a ped gastro ASAP. They test for blood right there, and can guide you from there.

Please don't get down on yourself. I know how hard it is when you don't know what to do to help you baby, and how hard it is to not get sleep

If you have any questions, please FM me. Sounds like you are going through what I went through

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

Posted by DRMom

Posted by want2beamom

I would make an appt with a ped. gastro. We use Dr Gold in Babylon---he is great. My son had the same thing...was on prevacid, and was put on Nutramigen, but still was having sleeping issues, eating issues...he was constantly in my arms...I would have to hold him facing out, so his belly was resting on my arm.

Anyway, turns out that even on Nutramigen, he still had blood in his stool...nutramigen still has milk in it, just more broken down than regular formula. So we went to Elecare.

My son was allergic to soy....many babies that are allergic to milk are allergic to soy...I would try to get in to a ped gastro ASAP. They test for blood right there, and can guide you from there.

Please don't get down on yourself. I know how hard it is when you don't know what to do to help you baby, and how hard it is to not get sleep

If you have any questions, please FM me. Sounds like you are going through what I went through

Your ped can test for blood in his stool right in the office.

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

OMG I feel so bad here are plenty of !!!!! I've been there with doing on your own. Next time you go to the PED DEMAND To see a specialist or tell her you will switch DR.'S!!!!! Also thank you & your DH for keeping us safe!!!

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

I would demand to see a ped. GI specialist if you need a referral from your reg. ped. if not, I would make my own appt. and go!

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

I don't have any experience with this but you could FM MrsS518, her 6 week old DD has a milk protein allergy, reflux and she is going to the ped GI specialist with her DD. Maybe she could help...

I hope it gets better for you....

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

You are his mother...don't ask the ped again for the ped-GI. Just take him to one.ATell the ped that you want the GI and you are not waiting anymore. This is not norm nor healthy for either you.
Soy is very drying and he may need "help" with that. I know some Peds rec'd a 2oz bottle of water if the baby is on Soy to help ease things a bit for the baby's GI track.
HUGS. This is really hard.

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

I agree, I would just find a GI specialist whether your ped says to wait or not. It's been long enough and you adn your DS are suffering.

Re: I'm at a complete loss - I cant figure out what's wrong with DS (long)

Re: UPDATED I'm at a complete loss - I cant figure out what's wrong with DS (long)

I'm glad you were finally able to get some answers and the referral that you needed. Just so you know, when my son had reflux I started adding rice cereal to his bottles and it made him really gassy and constipated, we had much better luck with oatmeal so if the rice gives you trouble you may want to try that. I know what you are going through, it's tough we went through so many different combinations of medicine, formula and cereal before we found the magic combo that stopped the crying and made my little man happy. It took us 8 long weeks. I promise, there is a light at the end of the tunnel, you'll get there. Hang in there.

Re: UPDATED I'm at a complete loss - I cant figure out what's wrong with DS (long)

wow, i am so sorry.. its tough.... u r doing a great job tho, being alone while DH is away. if u live around sea cliff i'll help ya out!!!! I am so happy the ped on call helped u... it was fate u spoke to her. so at least u got a more pro active doc on your side. why avent bottles? i swear by dr browns (my baby was sooo colicky).. and why rice cereal? it def binds a baby, rice is binding. can u get barley soy free? i switched to barley b/c my DS would get constipated.... those are just a couple tips.... how old is DS by the way?
keep us posted!!!

Re: UPDATED I'm at a complete loss - I cant figure out what's wrong with DS (long)

First of all, for going through all of this alone. I give you alot of credit for dealing with a baby with GI issues when your husband isn't around. My baby had major issues until she was a bout 2 months-- they determined it was a milk allergy, but I breastfeed, so I had to cut out all dairy from my diet. It does get better! I have heard, tough, that typically milk and soy allergies go hand in hand, so soy formula is definitely not helping. Hopefully the elecare will be better for him. Also, we love the Born Free bottles. Good luck with everything, and if you need any advice, feel free to fm me!