Infantreflux.org | Anemia....BF/Formla ? AGAIN.

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September 13, 2006 at 11:43 am #13464

Anonymous
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Just when I think we are finally making progress things get turned upside down again!

At nine months, David was finally having normal diapers while breastfeeding and a little mucus in them with solid food. (still plenty of reflux though). Solid food seemed to precipitate a lot of night waking.

I was terribly happy just to have his diapers normal with breastfeeding and no other major allergic reactions going on. I have stressed so much over the months about his intestinal irritation that has led to mucus and blood in his diapers. I was glad he was able to finally digest something well (I can’t tell you how lovely those normal diapers looked to me) and the only reason I was continuing with solids that his digestive tract didn’t seem ready for was because of pressure from the Ped. GI and Ped.

At his nine month checkup he tested as Profoundly Anemic. He had fallen from the 50th percentil weight wise to the 5th. (He started out at the 5th at birth. At his last check up he had been down to the 15th). He showed positive for occult blood when his stools were tested. The Ped. GI said that was the only way he could be so anemic.

I’m stunned! Good Grief! I wonder how much blood they would have found in his diaper had they tested a couple of months ago when they were just mucus globs. (I haven’t seen any visible blood since March.) I have been asking about and pointing this out at every appointment!

We got started with iron suppliments 2X/day right away and the ped. GI said to get him on as much hypoallergenic formula as possible, make sure I am having no milk for the Breastmilk he’s still getting. The assumption is that he must be allergic to the breastmilk and that is causing the bleeding. They want to minimize the amount he’s getting but he hasn’t been willing to take formula previously so they are hoping mixing works or they talked about having to put in a G-tube to get the formula in him. It would also allow them to count calories which they would like because of his weight.

Our Pediatrition did say though that his weight might just be his genetics and that 50% of the kids he sees show a growth curve like that. The big concern comes in because of the reflux/allergies/anemia as to whether that is normal for him or not.

So now, on iron and partial formula, his diapers are totally full of mucus again. Surely that is not healing his GI tract but obviously he needs iron.

Now I’m back to the “breastfeeding/fomula” question and which is really better in unusual circumstances. I have read everything I can get my hands on over the last 6 months and of course what is on this site. I find that there are studies and experts to support either view point with highly allergic kids and really no difinitive answers.

It is all so confusing to me when I try to sort it out. Even the theory that the allergies are a reaction to the proteins in foods and if you break those down to amino acids, you solve the problem doesn’t hold water with what I’ve observed in David. Before we started NMT allergy treatments, he reacted to oils/fats, corn syrup solids and other things that do not contain protein although I’m sure he was reacting to plenty of proteins as well. His face broke out when I tried him on Neocate just like when I ate something else he had a problem with. Olive oil caused blood in his stools.

I don’t know what to think any more. My first response to all of this was that if they want to do surgery on something and are concerned about his weight gain, maybe they should be thinking about fixing his reflux since even on 8mg prevacid 3X/day and Pepcid in between when needed, he’s been a fussy boy and had plenty of continuing reflux problems. We haven’t really seemed to have it under control this summer. but that was before his stool test came back poitive for blood. How do I know whether that is caused by breastmilk, or the solid foods he was struggling to digest? Now that his diapers are full of mucus again, how can I tell anything?

Sorry for running on! I feel like it is so important for David’s health to make the right choices but it is just so difficult to know what those are! I am weary!

Kara

September 13, 2006 at 1:09 pm #13470

Anonymous
Inactive

Oh Kara i am so sorry to hear. I mean the doctors should be thinking about some tests, right?? (I am sorry i cannot remember if you had any of these done) Have they spoken to you about and endo with biopsies, a pH probe and also some other tests to look further down his intestinal track, etc?? If i were you, that is what i would be pushing for, i think.

1. you need to know if the reflux is just reflux because of immature system or something else is causing it, like a protein intolerance or an allergy or maybe some bacteria in his track (I am thinking e coli maybe???). IF it is reflux and the inflamation and bleeding is from it, there is always a fundo… if it is other allergies, i know that it may take some time but hopefully they can work on a diet that is good for him

2. with teh endo they will look into the beginning of digestive track ie the esophagus, stomach adn a bit of duodenum and they might see something, maybe inflammation?? They may be able to take some biopsies and work out what is bothering him

3. the blood… it can come from different places – if the above came clear, i would have them look into the rest of the track – i know it is not pleasant, but you need to know what is causing it?? are you saying that he is losing blood in the stools and that is why he is anemic?? what type of anemia does he have?? i am surprised at this… have they done some bloodwork?

Let me know – i do not remember what tests you had done…. keep us posted

((HUGS))

September 13, 2006 at 1:21 pm #13472

Anonymous
Inactive

Will the GI increase his Prevacid? His dose does sound low. Abby is on 15mg a day but Dr. Phillips at Marci-Kids suggested 30mgs per day. But her GI won’t increase it. We are thinking about changing to Zegerid. I’m sure it’s a real hard decision about what to do with the breastfeeding or formula. Obviously, I am not in your shoes but I would probably switch to a formula. Since it seems like he is sensitive to so many things. How long was he on the Neocate? Did the GI think that the Neocate caused the rash? Abby has been on it for 2wks. now and it has really helped her. But every baby is different. Could you try something else like Elecare?

What does his GI think about laying off the solids for awhile? It might be too much for him. I would try and find the right formula first and try to get his meds. increased. I’m sure this is such a tough decision for you. Good Luck

September 13, 2006 at 1:24 pm #13473

hellbennt
Keymaster

“The assumption is that he must be allergic to the breastmilk and that is causing the bleeding. “

like you said, the proteins in your milk are what he’s reacting to- not your milk on the whole…

however, there ARE babies allergic to breastmilk:

This statement is correct as of 2004.
1 out of every 10,000 babies is allergic to breastmilk

I think this will help you, if you haven’t read it already: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013&a mp;PN=4

September 13, 2006 at 1:37 pm #13476

Anonymous
Inactive

I’m loosing my mind! He’s not on Prevacid, he’s on Zegerid and it is 24mg/day (3 doses of 8mg).

Kara

September 13, 2006 at 2:32 pm #13480

Anonymous
Inactive

Dr. Phillips rec. that Abby take 10mg 3x’s per day of the Zegerid. She is 5months and 14lbs. So that still sounds low. I would check and see if they would increase it.

I hope he feels better soon.

September 13, 2006 at 9:16 pm #13511

Anonymous
Inactive

As far as dosing goes. I did check this. On the chart at Marci kids, the dose goes down as age goes up. To my surprise, his dose actually should be a bit lower now than it was perscribed for him at 4 months old because of going from 1/5 mg/kg to 1 mg/kg. I had my husband check it for me. I’m actually giving him a bit more than the recommended amount.

September 13, 2006 at 9:19 pm #13513

Anonymous
Inactive

Laura,

I had read this post before. So is it when a baby can’t tolerate any protein that an elemental formula is required? Is a biopsy with EOS cells required to tell if that is the case?

Thanks,

Kara

September 13, 2006 at 11:21 pm #13518

hellbennt
Keymaster

kara,

I am by no means an expert…

I do believe the presence of eos cells will help give you more of an idea of what’s going on…I also think that if you have removed all milk and soy proteins from his diet and yours & he’s still having blood in his stools then you can try eliminating more (like wheat, rice, etc) and if really nothing clears it up then it might be time for an elemental formula…personally, I’d also post over on the yahoobreastfeeding reflux board, if your’e not already doing so…

I wish I knew more- I’d just read through the eos posts/links & FPIES links from the/my ‘main’ MSPI thread that’s ‘stickied’

HTH

September 14, 2006 at 12:08 am #13519

Anonymous
Inactive

Thais,

The only test we’ve had done is a swallow study which did not even show reflux. That was done by our pediatrician. The ped GI. said they only do the other tests when a baby is loosing signifigant weight. Our ped. said that they have changed their appoach because they used to routinely do those tests when he referred patients there. He was surprised. We both have asked specifically about having them done.

They do believe that he is so anemic because of bleeding in his GI tract (loosing it through his stools). The bleeding was confirmed with the stool sample. They did not say what kind of anemia. The term the doctor used was “PROFOUNDLY anemic” and he said this is usually accompanied by other deficiencies. I didn’t quite catch the “profoundly” at first and it took a bit to sink in that he was talking about something more than just ordinary anemia. Most of the links I could find on it had to do with children in third world countries. Apparantly it is a leading cause of death of children in these areas.

The doctor didn’t say anything about malabsorbtion but I’ve read since that anemia and celiacs are linked. The damage caused by celiacs causes malabsorbtion. I would like to have him tested for it and have called the Dr. to ask about it but he did not return my call. I see him tomorrow with my older son so I will ask then.

To me it seems like it is definitely time for some testing and some answers however, once again, their protocol for this situation does not include testing. They want him on iron and as much formula as possible for a month and then want to check his iron levels again. They said that his iron levels should show dramatic improvement in a month.

Did I answer all your questions? Thanks for taking time to read my long post!

Kara

September 14, 2006 at 8:15 am #13524

Anonymous
Inactive

If you want tests done and they won’t do it I would change GI’s. Abby’s previous GI did an Upper GI on her at 6wks even though she has never had any problems gaining weight.

September 14, 2006 at 8:26 am #13525

hellbennt
Keymaster

I’m with Andrea.

also, if you want to continue breastfeeding (if this gives him comfort, etc) and you don’t want to switch to formula until you know for sure that you have to, then this would be another reason to find another doctor/opinion

personally, I’d want a LOT of testing- that’s just me- I’d want an endoscopy to see what the heck is going on on there, I’d want allergy testing of some sort(because celiac and wheat allergies are 2 seperate things), celiac testing…

there’s a post from the MSPI link about misdiagnoses- this might help as well…

September 14, 2006 at 10:20 am #13540

Anonymous
Inactive

Thanks Kara! I can see how frustrated you are. Not gaining weight is really the same as losing in my mind, it is failure to thrive and it is about time the doctors take you seriously.

1. the swallow study may or may not show reflux – really depends, especially if you child refluxes like 30min after feeding, then it would not show (for example, my sister has reflux and she is fine when she eats but exactly 30min after eating, certain foods get back into her mouth (sorry if it is disgusting) but in her case, it is just food and no acid but she never refluxes when she eating or right after. So, it is kind of a useless test for determining reflux (good thing is that baby is not aspirating and food is going the right way, which is important)

2. the tests i mentioned are probably teh most relevant i can think of. Yes, you can do allergy testing but people differ on the results (we saw what is supposedly the best ped allergist team at Mt Sinai when Matthew was first hospitalised for not eating anf they told us to forget the tests). But you can do the scope and look for teh EOS cells (they are just white blood cells, ie cells that fight infections that get turned on when there is an allergen around, ie maybe some proteins??).

I am so sorry you are going through this with no support… i know this is extreme but you said that your baby was hospitalised 2x already?? Maybe the best way to get these tests done is through the ER?? You get admitted and once you are inpatient, you get them done. Our GI had us admitted so that we would get some tests faster than as outpatient…

One more thing – i have also found out that different peds consider anemia to quick in at different levels… when we were admitted the first time in NY, Matthew was a bit anemic and the ped said was totally normal; then in SPain we got at least 2 sets of bloodwork done at different times and hte ped said all is OK. Then when we got back to the US, our currnet ped looked at the records and he FREAKED OUT saying that he was severely anemic, had we done anything about this etc etc… did a blood test and his RBC was perfect at the time.

Hope i helped you somehow.

September 14, 2006 at 10:22 am #13541

Anonymous
Inactive

One more thing – where are you located?? Through this board and another board we may be able to get you some names of other doctors

September 14, 2006 at 1:37 pm #13562

Anonymous
Inactive

Hello and welcome,

Sorry I didn’t respond earlier. I don’t have much advice since I fortunatley only had to deal with reflux in my children.

I just don’t understand why the doctor who said your son is “Profoundly Anemic” is not concerned enough to run some tests and find out why your baby is losing so much blood in his stools. While iron supplements will help, isn’t it important to find out WHY he’s so anemic in the first place? In your situation I’d probably look for another doctor.

Good luck. I hope some of the other moms here can help you.
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