At the end of my rope!

[Anonymous]

New to the site and am just really looking for good insight! I have a 6 month old who has seen the Dr. 21+ times in the last 4 months and has been given 21 different prescriptions. A quick history…

He started out wanting to eat ALL the time at just a few weeks old. He would eat 4 oz (at 2 weeks old) every 1.5 – 2 hours. It seemed like he was NEVER full. At about 3 months he starting breaking out with bad eczema so we switched him to soy – nothing changed. At about 4 months he started getting ear infections (4 total to date). During that time for a couple weeks he started throwing up every bottle so we switched him to Alimentumin. He stopped throwing up and his eczema improved greatly. Now fast forward to today – he has had an ear infection for over 3 weeks. He has had 4 antibiotics, including 3 rounds of rocefin (sp?) and still no improvement. We started to reduce the amount of ceral in his bottle since he couldn suck as hard as usual due to the infection. He even stopped eating for a week since it hurt to eat. He went down to only 4 oz a day for a couple of days. Since we reduced the ceral he stopped sleeping. By the way, 6 months and still eats two bottle in the middle of the night!! We saw the ENT yesterday and he will be getting his adenoids removed and tubes out on May 27th. The ENT believes this is all being caused by reflux, which he has been on previcid for a month but apparently the Dr. prescribe it wrong (only was giving it once a day). He has been on previcid, pulmicort, rhinocort, albuterol, and every antibotic under the sun. We are also behing on 2 sets of shots since we cannot get him healthy enough to take them. Oh and he has had a food and environment allergery test which both came back negative.

Here are some of my questions:

Propping the bed
How do you do this. Everything I have tried just makes him roll to the bottom of the crib. I have looked at the tucker sling but my son is already 20 lbs (he is a big boy!)

Cereal in the bottle
Has anyone found a good bottle for cereal? I have been using the palytex with fast flow nipples but the whole isn’t big enough for him since the infections make it hard to suck. I have seen the Sassy Ceral bottle but it only hold 4 oz.

Anything information you guys can give me would be so appreciated. I am at my wits end. I work 40 hours a week with a 2 hour commute everyday and have been living on an average of 6 hours a night interupted every 2-3 hours. I also have a 4 year old to take care who gets bad night terrors. I really used to love my sleep!

[Anonymous]

Have you tried the cereal nipples for the drop-ins? Its a y cut nipple. jillynjacksmom2009-04-15 20:08:15

[hellbennt]

at this point I would seriously consider medication.

you sound desperate.

http://www.marci-kids.com is THE place to research.

if you’re lucky, you can do your research and then TELL the ent to

prescribe you what you want for your son.

I would also ask the ENT to get a Swallow Study done to find out HOW he’s swallowing, the mechanics of it, so that you can know once and for all if he NEEDS the thickening. if he’s aspirating at all then yes he’ll need thickening.

once he’s comfortable he should start to eat/drink again.

ask ENT about carafate- it’s a quick-fix/band-aid but might help him on the road to healing- it’s not long-term but PPIs can be…

[Anonymous]

The ENT suggested I call his doctor to get him on the right dosage of prevacid and today was the first day of that. I didn’t see any improvement but I do know they need time to build it up in their system.

You are also right about that website – I came across it today during work and spent a good chunk of time not working and reading most of the website. It was VERY insightfull and made me feel a little better to know that most of his symptoms were right on with EER. As weird as it sounds I am almost happy that we have a some-what diganois. At least we can now move ahead with some sort of treatment.

I will have to ask about the swallow study. His ENT is not comfortable “treating” reflux and refered me back to his pediatricians, which I cannot stand but have been the best of the worst!

Thank you so much for answering me. It is a nice feeling knowing I am not the only one going through this frustrating situation. You just feel so helpless and want to take the pain for them. I also have a 4 year old that is dragged all over the place to take him to the doctors all the time. I feel bad for her too.

I am not completly new to this as my daughter had surgery at 2 to remove her adenoids and tonsils and put tube in. That changed our lives forever – she was a completly different person after the surgery and did 99.9% better! However, she was no where near as bad as my son is.

I am now using the y-cutt nipples and he can work with them. Although he is still really uncomfortable while sucking the “thick” formula out.

acpaop2009-04-15 22:15:16

[hellbennt]

I would think that by the time the meds ‘kick in’ that you can then try not thickening…if baby is gaining well (doesn’t need the extra calories) and is not aspirating then there’s no really ‘need’ to thicken- or if you do need to you might want to think about/research something like Simply Thick…

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