Help solve Medical Mystery?

[Anonymous]

Hoping someone recognizes these symptoms and can give some clues to help me understand what to do. Desperately seeking everyone’s knowledge and experience to weigh in! I hope you can spare 10 minutes to read and respond.

My guy is 8 months now and I’ve been on this forum since he was less than 2 months old. I don’t feel we’ve gotten much closer to understanding or solving his problem.

History

Screaming/Arching back while eating (breastmilk) begins around 3 weeks. Eats less than 1 oz/meal. Small amount of spit up after meals. Severe Colic (cries 12 – 16 hrs a day) and hates car seat. At times weight loss occurs. (6 pounds at birth and born 3 weeks early).

8 weeks diagnosed (based only on symptoms) with GERD. Begins Zantac. Begin formula (Good Start) is consitpated and dark gray stools. Develops mild ezcema and cradle cap. Switch to Soy, he is diagnosed with MSPI after finding blood in stool and stool blood test done.

12 weeks. Zantac does nothing to ease GERD symptoms. See GI Specialist and start Prevacid Solutabs and switch to Alimentum formula.Cradle cap and ezcema clear but GERD symptoms worsen (more screaming, more “wet burps”, eats less, looses weight).

16 weeks slight improvement in GERD symptoms. Seems uncomfortable when eating, but doesn’t scream and arch as much. Instead flaps arms, looks a little like Sanidfer’s Syndrome. Eating increases and can eat 2 to 3 oz at a time. Switch to max dose Prevacid (Per Marci Kids) to alleviate eating discomfort. This does NOT help. Switch back to 1 Solutab per day. Colic improves, cries about 3 hours a day. Begins daycare. Develops a “cold”. Runny nose and lot’s of sneezing 3 days after daycare. 3 weeks later congestion still present and develops a cough (sounds like a seal bark). Daily humidifier, and vicks baby rub used on chest and feet. Switch formula to Similar Sinsitive and conduct another stool test for allery. Comes back negative for blood in stool (dr. said babies can outgrow their MSPI allergy and he seems to not like the taste of Alimentum which is why we switched). Baby weighs 12 pounds now.

24 weeks GERD symptoms same. Cold symptoms same. Chest xray shows tiny spot of pneumonia. Treated for 10 days with Ammoxicillin. Nasal congestion improve along with improvement in cough (but still coughs daily) during treatment. Colic improves, almost no crying just fussy baby. Baby develops heart murmur. See a Cardiologist who determins that it’s due to chest congestion. States lungs are enlarged and organs are being pushed lower in body as a result of enlarged lungs. Start on cereals and fruits. Seems to LOVE eating from spoon compared to bottle feeding. Baby weighs 14 pounds now.

28 weeks GERD symptoms same. Cold symptoms return as prior to Ammoxicillin. Diagnosed with Bronchilitis and given Albuterol Inhaler. Inhaler does NOTHING to help with symptoms. Baby is ‘hoarse’ when he babbles.

30 weeks. GERD symptoms same. Go to ER as congestion/cough are daily and has not had one day without ‘barking cough’. Tests for RSV come back negative. Some days coughs twice hour, some days coughs 7 to 10 times a minute and seems to have a hard time catching breath. Eating is ‘up and down’ with some weeks eats 6 to 7 oz per/feeding and seems mildly uncomfortable and sometimes eating 2 to 3 oz per feeding and seems very uncomfortable.

32 weeks. See GI Specialist and Pulmonoligist in same session as they try to figure out why congestion/cough persist. Both drs come to same diagnosis that EVERYTHING we’re experiencing and all sympts are a result of GERD agitating his esophogas and vocals. Dr orders Barium Swallow to rule out internal defect (still waiting on this test). Drs feel GERD is caused from the milk based formula and recommend Goats milk or Alimentum. Encourage me to give him protein in his diet as he is still on cereals and fruits. Also prescribe a Zantac/Prevacid combo. Zantac at night, Prevacid in morning. Next day switch to Goats milk, begin Zantac and vitamin drops. 3 days later baby has lots of blood in stool, cries constantly, and is constipated. Baby weighs 16 pounds now.

33 Weeks switch to Alimentum and begin introducing protein as recommended (turkey made at home). 3 days later baby’s cough worsens and is now developing eczema again.

My thoughts/questions in general

• Why did eczema clear before on Alimentum and now it appears to possibly be causing it or can Turkey cause eczema? Seems odd.
• Can GERD really cause constant cough that sounds like a seal bark?
• If GERD is the cause, what’s causing the nasal congestion daily?
• Why are GERD symptoms unmanageable even on max dose Prevacid and on Prevacid/Zantac combo?

Thank you for caring!

[hellbennt]

oh my. congestion and all of the above screams ALLERGY or INTOLERANCE.

personally, I’d go back to alimentum for a good two weeks AND I’d do max doses of prevacid AND zantac, too.

I would try bufferbabies and not solutabs. baby can be reacting to something in solutab.

also when you gave it (prevacid solutab), were you giving in two doses? were you giving on an empty stomach followed by a ‘meal’ 30 minutes later?

I would NOT give proteins just yet, since your baby obviously has issues w/ proteins! I did not give proteins until into 9th month.

if you are giving turkey- is it organic?

yes GERD can cause cough and congestion, but actually it’s most likely the INTOLERANCE to PROTEIN(s) that is causing all of it…

personally I would NOT do goat’s milk at this time. I would stick to alumentum & give it a GOOD TWO WEEKS and I would not be giving proteins at this time. I actually would be hesitant to give cereal, too! WHAT cereal are you giving? What are the ingredients? THe cereal could have ‘hidden’ milk and/or soy that is aggrevating refllux/congestion/cough…I would give prevacid, the highest dose!

two times a day and zantac- highest dose! also.

Give it two weeks of watching: diet, via formula & solids, & meds

hellbennt2010-12-30 14:31:27

[Anonymous]

Chiming in quickly, but I agree with everything Laura said. You could try nutramigen (it is the same as alimentum,just made by Enfamil and not similac and I do think they taste slightly different!) The barking cough makes me think croup, but I would think that it would have gone away by now if it was croup, but with croup they usually do oral steroids (both of my kids had Croup this summer we made it 3.5yrs before Cooper got it and Caroline was only 7 or 8 months old) but the oral steroids made a huge difference! It is possible that baby is reacting to the turkey… I would not add any new foods until you can figure out exactly what is going on… I would do the formula change for 2-4wks and then maybe work on adding in new foods! This way you know what caused a problem and don’t have to keep guessing as to what caused it!

[Anonymous]

Hellbent: Wow fast reply – thanks so much! With Solutabs we did experiment with different doses, tried 7 mg (i think) 3 times a day also tried 15 mg twice a day and best dose where he seems most comfortable is actually just 1 dose a day of 15 mg. Can try max dose of Zantac. Forgot to mention since starting Zantac baby spits up more often (not more quantity though). Can try max dose and stick with it for a couple weeks. Will stop turkey today. Just called his nurse who told me that when he was on Alimentum back in July she showed a note of him developing ezcema then as well. Still think I should stick with Alimentum?

Coopers Mom: Thank you also for the prompt response, really means alot! Stupid question, but he has seen 7 different doctors for “second opinions” with cough and no one mentioned croup (they most commonly said bronchilitis). I will send e-mail to his reg dr and ask about croup. Sounds like that should have gone away by now. Strangest thing is that cough ALWAYS sounds the same but on a random day (with no dietary changes) it’s frequency will flare up and become extreme, then a day or two later goes back to “normal cough”… Sad that a cough is considered normal now!

[Anonymous]

Hellbent: Forgot to answer question if giving Solutab followed by a meal 30 min later. No, he eats and gets Prevacid usually an hour after eating. He typically doesn’t eat again for another few hours. His feedings are usually similar. Early morning feeding and late night feeding = eats great, sleepy, minor arm movements. All other feedings = challenging, seems agitated and uncomfortable.

[Anonymous]

Hellbent: Doing really badly at answering all your questions. No, turkey has not been organic. I’ve purchased turkey breasts, baked with olive oil (he’s had that before) and processed in food mill. Mix with a little of his formula to get better consistency.

[Anonymous]

Here are info on his cereals:

Malt o meal – wheat farina, malted barley, calcuium carbonate, iron, b6, folic acid, b1, bw

Oatmeal – whole grain oat flour (contains wheat), soybean oil, banana flakes, tri and dicaccium phosphate, soybean oil, mixed tocopherol, iron, zinc sulfate, Vitamin E, vitamin A & B, Vitamin B6, Vitamin B2, Vitamin B1, Folic acid, Vitamin B12

Whole Grain Rice Cereal – organic whole grain brown rice, vitamin e, iron

[hellbennt]

ok I would stick to cereals like the Rice one, ones that do not have multiple ingredients- the oatmeal has banana – how does he do w/ banana? some babies have a hard time w/ bananas (is related to latex I think?)

anyway: I would stop proteins and stick to fruits & veggies and ‘simple’ cereal(s) until you see some progress…

in order for the solutab to work the BEST- you must give on an empty stomach, follwed by a ‘meal’ 30 minutes later…

I would start doing this, alter diet, & add in zantac, too.

I would also see about getting over the counter prevacid capsules because there might be something in the solutabs that bother him- however, I would try two weeks administering the solutabs ‘properly’ before jumping to switch to capsules…

[Anonymous]

Ok, I’m getting rid of the other cereals and I spent the afternoon roasting and pureeing whole foods for him such as apple, pear, carrots, sweet potatoe, green beans, and peaches. I’ll give him those with a little of the rice cereal. Will also be consistent with giving the solutab 30 min. before meal and will increase Zantac.

One question is still really bothering me – any gut feeling with this?

Why the sudden onset of Eczema with Alimentum, when he’s been on Similac Sensitive for so long with no Eczema and it is also milk based? I’ve compared all the ingredients, but alas am no scientist and haven’t got a clue!

[Anonymous]

So I’ve stuck with Alimentum, switched to max dose and removed cereals and meat from diet.

Things seem to be getting worse on Alimentum. Before we didn’t feel so bad that my son didn’t want to drink much formula because he loved solids. Since yesterday he has also been rejecting solids. He seems to like the taste and smiles when the food hits his mouth, but when he swallows it looks like he is having a hard time and then starts crying. Ultimately he refuses to eat more than a spoonfull. He’s been on Alimentum and Zantac for 1 week exactly as of today.

It is possible these issues are caused by the Zantac and not the Alimentum?

Help!

[hellbennt]

if you think the other formula was better, go back to it?

maybe add in the alimentum slooowly?

like a bottle of the other formula w/ 1oz of alimentum for a week

then the bottle w/ the formula w/ 2oz alimentum for a week-

slow like that?

that’s all I can think of…?

[Anonymous]

I have an update and a couple questions

My son has been on Alimentum for 3 weeks today. His eczema which began a couple days after the switch to Alimentum is worse despite treating it with ointment. His cough and congestion had initially gone away, but started up again 2 days ago. They are mild compared to before, but I’m wondering if this could be that “honeymoon period” that you described in another post Laura?

I’m still baffled as to why the hypoalergenic formula is causing eczema when the Lactose formula was not. Although obviously that formula wasn’t great either.

Anyway, does it sound like he is allergic to Alimentum?

I’ve compared the ingredients of the old form (Similac Sensitive) with the Alimentum and I honestly can’t understand which of the ingredients could be triggering a new allergy?

My other question… My guy is 8 months old and weighs 16 pounds. He hasn’t gained weight in almost 2 months. At his best (on Similac Sensitive) he was eating about 35 oz a day. He dropped down to about 28-32 over the past couple months, then the last few weeks (esp on Alimentum) he is eating 14-19 oz a day.

HOWEVER – he loves solid food. He eats about 2 cups of puree’d fruits and veggies a day ( I make these at home so I know they are natural). My other question – would anyone recommend me trying to ween him off bottle, just give him solids and see if he will take juice and water for his fluids along with vitamins?

Last question – I’ve read different internet sites but they vary so greatly. How many calories does my baby need a day to grow?

Thanks so much to everyone. I don’t know where I’d be without this forum.

Natalie

[hellbennt]

Natalie,

maybe try neocate or elecare for two weeks? then explore other options?

I posted this in another post:

https://www.infantreflux.org/forum/forum_posts.asp?TID=11324&KW=corn+rice+syrup+formula&PN=2

maybe there is information there to help you?

[Anonymous]

Hey Laura,

Feel like I’m hitting rock bottom here. Barium Swallow on Thurs revealed nothing except that he has reflux. Dr. did say it “wasn’t severe”. Anatomically everything is fine.

Been on Neocate 3 days. Eczema and cold/cough clearning up. Unfortunately he is feeding very poorly. Yesterday only 11 oz and today been fighting us all day and screams every time he sees the bottle. Ate 5 oz at morning feeding (sleepy) and 1 oz this afternoon and that’s it.

I’m so scared. Not sure what to do : (

[Anonymous]

Have you considered seeing a pediatric allergist? Generally allergy testing is not done until they are two however, in certain cases they will do testing earlier. This seems like it might be one of those cases.

Also, when comparing formulas, are you comparing powder to powder, liquid to liquid? The reason I ask is that my son has a corn allergy that we did not figure out until he was 18mo. Looking back he did well on Allimentum for a few weeks and then took a turn for the worse. In hindsight we realized that the powder is full of corn (as is all formula) but the RTF is corn free. There might be something in powder/liquid that isn’t in the other and that’s why you are getting weird results.

Tiffany

[Author]

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