GI appt. #2

Where do I begin?  I had a lot of information thrown at me today and a lot that has  happened in the past  couple days. 

Today was Camden’s follow-up GI appt.  This appointment was scheduled three months ago when we saw the GI for the first time.  I never thought we’d still need this appointment.  At the time I remember thinking, “I’ll make this appointment, but my baby will be all better by the time he’s one.”  Gosh, I was wrong.  Sound familiar?

We’re in the same place as far as the reflux.  It’s still there….Camden has flare ups from time to time and we deal with it.   He has also been having problems lately with his stomach.  So if we’re not dealing with one thing, it’s another.  The past two nights he has been up crying for an hour or more.  The first night I could soothe him with  nursing.  Last night I could barely hold on to him he was so upset.  Arching back, thrashing, screaming.  It was awful.  I finally had to face him forward, wrap my arms around him tightly and let him scream it out.  He wanted nothing to do with nursing.   We are eliminating all his allergen foods and also feeding him gluten-free after some bouts with stomach pain and diarrhea after eating grains.  The diarrhea improved  once the gluten was removed.  The stomach pain still seems to be there, and mainly when he eats table foods.  The food comes through undigested, just like it looked when it went in pretty much.  After these experiences, I’ve really stuck with jar baby food because he does okay with that.  I’m a little afraid to move beyond that. 

So that’s a bit of the history from the past month or so.  Stomach pain on top of the reflux.  And still sleepless, crying nights. 

The GI has recommended the following plan:

1.  Retest Camden for  food allergies. 

He wants to make sure he hasn’t developed any more allergies and see if the other allergies are still there.  He thinks Camden’s symptoms sound food-allergy related.

2.  Wean him from breast milk.

Although I have eliminated all dairy out of my diet, I am still consuming the other allergen foods.  Camden could be reacting to these through my breast milk, even if it’s just a small amount.   I have wanted to wean Camden by now, but he only takes 2-3 ounces from the bottle at a time so I’m always afraid he’s not getting enough.  A dietician has put him on a special diet, a bit more fat and protein, to help him gain some weight.  Although he looks healthy, he’s slowly going downhill.  He was born at the 75th percentile and is now in the 10th percentile.  We need to make sure in the next couple months he doesn’t go downhill anymore.  Pray that he will eat more and drink more.  He gets to a point now where he just refuses any more.

3.  Endoscopy. 

This is the third and final instruction from him.  It is the scariest for me.  I feel sick to my stomach thinking about  Camden going through another procedure.

An endoscopy is a procedure that will let the doctor see the inside of the esophagus, stomach and small intestine.  A soft, flexible tube goes in the mouth and down to the stomach.  Once this tube is in, the doctor can look at the lining of the esophagus, stomach and intestine on a TV monitor.  Camden will be asleep during the procedure.  The doctor will collect small samples of tissues to be biopsied.  He will send those to the lab to check for things like Celiac Disease, eosinophilic esophagitis, etc.  The scope will be able to tell us if Camden is still refluxing and if there’s any inflammation.  This is considered day surgery so there’s no eating /drinking after midnight and only clear liquids up to three hours before the procedure.  Same guidelines as when the tubes were put in.  Along with the endoscopy, he will also do a flexible sigmoidoscopy (which is a tube in the rear end) to check things in there.  Camden also has to be off his medicine for two weeks before the test and return to eating gluten containing foods.  This helps the doctor see if damage is being done.  I get why, but it seems bad to say, “Do this or do that to cause the damage so I can see it.”

I hate the thought of this invasive procedure being done!!!!

 

Now, here’s MY plan:

1.  Wean Camden from breast milk.

I agree with dr.’s reasoning and  then we will know he’s getting no allergen foods to contribute or cause any problems.

2.  Retest him for allergies.

3.  Take him off his Prevacid now…cold turkey. 

You may be thinking I’ve lost my mind right now (maybe I have), but I have reason to believe that this medicine may be causing the stomach issues.  If it’s suppressing the stomach acid, then he may not have enough stomach acid to help digest his food.  The GI didn’t agree with this philosophy, but like I’ve said before, I don’t trust doctors 100%.  I need to try this to know without a doubt that the medicine isn’t causing these problems. 

I have to do these things before I can feel okay going forward with the endoscopy.  If he improves, then we eliminate an unnecessary, very invasive procedure.  If he doesn’t improve, then we go forward with the procedure and find out what’s wrong in there.  At this point, we’ve been through so much, I don’t see why it’s not worth a shot. 

Please keep us in your prayers.  The next couple months may be rough.  The endoscopy is scheduled in three months.  This is so we have plenty of time to do the testing, weaning, etc.  I’m afraid we may have more sleepless nights in our future, but sometimes you have to let it get worse before it gets better.  Right?

I will start feeding Camden gluten again unless he starts having the diarrhea and stomach pain.  There’s no way I’ll continue feeding him that if it’s going to cause a lot of pain and suffering. 

I’ll keep you posted on how things are going so be sure to check in. 

Prayers are always welcomed!

UPDATE:
I should also add that I am praying and trusting completely on God to guide us in the right direction, to help us make the right decisions.

GI appointment

Everything is a puzzle and we need all the pieces to get the big picture.

That's my evaluation of the day. Camden is a puzzle and we need to get all the pieces to make him better.

The GI was so very nice and friendly. I truly felt that he wanted to help Camden (and me). He listened very intently and asked me lots of questions. He referred us to an allergist and ENT, to which I said "DONE!" Once Camden sees those two, the three of them will put their reports together and see what they get.

He ordered a couple of things first though. He wants an upper GI done. This will tell us what, if anything, is going on and also if anything physically is wrong. I do agree with looking inside there and seeing what's going on, but I worry about it because Camden does NOT take a bottle. For this test, he's required to drink a bottle of Barium. Hmmmm.....I said he does take his medicine from the syringe so this may be the way we have to go. Second, he wants an evaluation done by a speech therapist at Children's, but we've decided to stick with the therapists we have already. He does want a swallow study done so I need to check and see if our therapist will do that. I'll find that out on Monday. Third, he ordered some lab tests be done. We're going to wait and do that next Thursday when we're there with the allergist in case he orders any lab tests. That way Camden is only being poked once. He wants a CBC (complete blood count) and his iron checked. He wants to make sure he's not anemic too. He put him on a prescription for a medicine that is basically like a muli-vitamin with extra iron. Fourth, he referred him to the feeding clinic at Children's. This is a team of doctors that will work with Camden on his feeding issues. Supposed to be remarkable! The only problem is that there is a six-month waiting list. Ugh. I believe that God has opened many doors though and if Camen truly needs this, he'll get in sooner. I really hope six months from now that Camden is eating food!

I feel that this whole thing is a process and we're on the right track. It's just going to take some time and patience to get there. I felt really good when the GI recommended the allergist and ENT. Just another sign that we're on the right road.

Meanwhile, Logan's been diagnosed with a sinus infection so he's on antiobiotics for that and also eye drops as he's still having gunky eyes. We had another bad night last night with him....crying and saying his throat hurt. Hopefully the medicine kicks in and tonight is better. One kid being up is enough, I don't need two up at night!

Camden's evaluation....and more

Camden's Birth to Three evaluation was yesterday. It went well and he has passed to the next level (not sure if that's good or not). He will be assessed on May 20th by a team to see if he qualifies by at least 25% or more for therapy. The coordinator felt in her gut that he would qualify, but the therapist has the final say. I think he probably will too considering we already had one PT tell us he should have therapy. The coordinator was more concerned with his feeding issues and wants him evaluated for feeding therapy also. Not a big surprise for me. Hopefully the speech therapist can come out on May 20th to evaluate him; otherwise, that assessment will be another day. We're going to go to an evaluation at HealthReach and see what they suggest too. I feel that they're a little more qualified, but not sure about receiving treatment there. Our insurance will only cover 20 visits for therapy so we may have to split up between HealthReach and Birth to Three. Camden was nothing but CUTE for the coordinator, flashing her all sorts of flirty smiles. :)

On another note....I called yesterday to schedule Camden's GI appt. I was praying so hard that it wouldn't be a month before we could get in. Ideally, it would be better to have that appt. first, as I think that's where we need to start. They had a cancellation for Thursday and we able to offer it to us! So, TOMORROW is the big GI appt.!!!!! Honestly, I am nervous. But I know it's the next step that we need. Even the coordinator from Birth to Three was relieved to hear we were going to a GI. Our appt. is tomorrow morning at 9:50 at Children's Hospital.

I feel that all our appointments go in order of importance: gastroenterlogist, allergist and ENT. Depending on what answers or info we get, I may cancel the ENT. We'll see. I feel that a lot of those symptoms are the result of allergies, but I'm no doctor.

Meanwhile, Camden is about the same. I have my journal to bring with tomorrow. We have so many appts. this month it's a little overwhelming. Next week Monday is the evaluation with the feeding therapist; Wednesday is the evaluation with the physical therapist; and Thursday is the allergist appt. so back to Children's.

On top of that, Isaac is having a terrible time at school and Logan's eyes swelled up the other night and continue to have green gunk and tearing. I've called the doctor about it and I'm waiting to hear. Josh and I both thought he was having an allergic reaction to all the pollen outside. He was outside a lot this past weekend. But now I'm wondering. He tells me his mouth hurts (which I interpret as his throat hurting) and is coughing. He cried on and off for half the night last night and then Camden was up twice. So yes, I'm tired.....but what else is new?!?!?!?!

Isaac had a field trip today to Madison. He's visiting lots of different places up there and bringing home a dog tag for Hunter from the Veteran's Museum. I can't wait to hear all about his day. He won't be home until almost 7 tonight!

That's about it. 'Til tomorrow.....