Monday, June 29, 2009

One Step Forward, Two Steps Back

We had a good couple of days last week. On Wednesday and Thursday, Bambino ate like a normal toddler for the first time in his life. His Feeding Therapist and Dietitian witnessed this on Thursday morning; he ate whatever I put out in front of him: two servings of rice porridge, a whole plum and then he munched on dried bananas and strawberries. We were all ecstatic. In addition, his bowel movement seemed to have normalized that we stopped giving him MiraLax. His Neocate intake is still low but at least he is eating normal food well; and his disposition is entirely better. For a couple of days he actually slept better, only waking up once during the night. The eczema-itches also gradually disappeared.

Dietitian P attributed this newfound appetite to three days of Periactin coupled with the Zinc supplement. I was beginning to hope we can scrap any plans of placing feeding tubes.

Then on Friday, everything was totally different. He refused to eat. He was constipated again and it's a lot worse this time. He would twist his tiny body while gripping on something in an attempt to push; his face red and contorted. This happens every half hour and it is heartbreaking to watch. And the worst part is that nothing really comes out but tiny pellets of dry and hard stool.

In addition, he also started to get a Netherton break out on Wednesday. I'm calling it the "classic Netherton" break out to differentiate it from his eczema breakout, which my husband and I believe he developed just recently. As a point of comparison, eczema is itchy and would affect mostly his hands and feet whereas NS is painful (like a sunburn) and affects his entire body. The appearance of the hives are also different and we've learned to tell the distinction.

So because his skin, mostly around his torso, is painful to touch, Bambino is just so miserable. He is not sleeping well again and he refuses to eat or drink anything. He evidently takes comfort from nursing and that's all he wants to do. I was able to get him to take MiraLax only with water.

This morning, I called the GI doctor for a number of issues: 1. his Zinc supplement is all gone and we don't have a refill. 2. What to do with the constipation 3. How are we going to proceed with the GI tube?

I'm still waiting for a call-back.

It seems like there's always something going on with my Bambino. Right now, I just wish the pain will go away so he can be a happy child again.

Saturday, June 20, 2009

Zinc & Laxatives

It has been a difficult three weeks. I know, this is nothing new. I spent a lot of time calling doctors' offices and exchanging emails with other Mommies - the previous one is frustrating. The secretaries promise to have the doctors call you back and you wait and you wait until you don't want to wait anymore and you pick up the phone the following day and go through the same conversation with the secretaries - it was beyond frustrating.

The emails with Mommies are far more reliable, the replies almost instantaneous and the notes are more personal and warm and with a wealth of useful information. Ladies, if you are reading this please know that I am very, very grateful to have known you. Courtney, Wendy, AnnaDawn, Erin - you are heaven-sent.

So the updates from the last 2 weeks:

  • Still constipated. My suspected culprit is the new antibiotic, Bactrim, but he's been off of it for a week now and he is still constipated. We just started him on MiraLax with no result. I find it odd that he feels the urge to "go" almost every hour but produces only little pellets of stool. It's almost like diarrhea in it's frequency, but constipation in the stool's consistency. This has made Bambino more miserable than he already is. I made a mental note to call GI again on Monday regarding this.
  • I called the Derm to let him know that Bambino is still itching a lot and hasn't been sleeping even after 10 days on Bactrim. He put him back on Fluticasone 0.05% (Cutivate), a topical steroid and ordered to increase bleach bath to 1x/day from twice a week. He also told me to soak him in the tub thrice a day but I haven't been doing this since his tushie is already raw and painful from too much "activity" and sitting on the tub is not a very pleasant experience these days. Diaper changes are extremely difficult.
  • They started him on Zinc supplement two days ago. He's is to take it for 10 days and it's supposed to improve his appetite as well as correct his deficiency.
  • We saw his Immunologist last Wednesday. He weighed in at 16lbs 15oz. We're one ounce away from the 17lb mark, yay!! We got his latest batch of lab results. The notable allergens are as follows:
  1. cod fish - class 6 (the highest class there is.)
  2. almond - class 2
  3. black-eyed peas - class 3
  4. pumpkin - class 2
  5. rye - class 4
  6. tuna fish - class 1 (borderline)
Interestingly, the results show that he is extremely allergic to cod fish and only slightly allergic to tuna; which is confusing because they are both saltwater fish. I've discussed the similarities and differences between these two fishes with my husband and mother-in-law, but I still can't figure out why they give him very different reactions. But like everything, these are all theoretical - he hasn't really eaten any kind of fish at all to know how he would actually react to them.
  • He is still not eating. I was hoping to get a yes or no answer from the GI doc last week reagrding G-tube, but he wanted more information from Bambino's medical records. These doctors! Do they want to see my baby waste away before they do anything about it? They keep saying he is not malnourished. But his growth chart tells us he is stagnating! Even the Dietitian thinks a tube is what my baby needs right now.
I had an interesting email exchange with a Mom from San Diego who told me her kids got growth hormone shots and got excellent results. This possibility was brought up by our Pedia on his 18th month check. I intend to do my own research on the matter as well.

Tuesday, June 9, 2009

At My Wit's End

He isn't eating. He isn't sleeping. He's not growing. He is not even pooping!

Last week, we made an emergency appointment to see Dr. H, Bambino's new Dermatologist to see if he has new ideas about the itch. We were in and out of his office. He took one look at the baby and declared that he had Staph infection. I was surprised because he has been on Keflex for 2 weeks already and he has 1 more week to go. He told me Keflex apparently is not doing the job anymore.

So he wrote a script for Bactrim and told me to give Bambino a bleach bath twice a week. He sounded so positive that the itching will miraculously disappear in five days, "otherwise, call me" he says.

So that night, I gave him a bleach bath. I don't know if it was my imagination but he stopped scratching right after his bath. He also ate more than usual at dinner that evening. Even sleep was a little better that night. I was beginning to feel hopeful.

And then on Thursday morning, everything was back to the usual. The Feeding Therapist and Dietitian were there but Bambino refused to eat anything - he just sat on his chair furiously scratching at his hands, head and whatever part of his body he can reach. Friday was worse because in addition to the itches, he was also constipated. Dr. H warned me that the new antibiotic could give him either loose bowel or constipation - I guess I should be thankful that he got the "lesser of two evils." And so because he feels bloated, he also refuses to eat or drink anything besides breast milk.

Yesterday after conferring with his Pedia, we tried suppositories to help him go potty, but it didn't do the job.

On days like these, the idea of a feeding tube becomes very, very attractive to me. I know it is extreme and as much as I'd like to avoid drastic measures as much as I could, I am questioning myself whether my aversion to medical procedures is good for my baby.

Right now, the GI doctor is just waiting for all medical records from UCLA in order to review his case, then he will recommend whether or not we will go for the feeding-tube route.

I hope the doctors know what they are doing.