One Pound Gained!

I remember a number of instances when I was asked by other Mommies how much my tiny baby weighed and, for almost half a year, my reply never changed. It was always "almost 17 lbs." For the longest time, I've waited impatiently for my Bambino to cross that 17 pound mark.

Never happened.

His weight always fluctuated between 16lb5oz to 16lb15oz. He would gain a few pounds only to lose more than what he gained after a bad break out. I remember crossing my fingers, praying, every time he gets weighed at the doctor's office but we never got to see that elusive "17" figure on the scale.

Then exactly a week ago, 9 days after his g-tube placement surgery, he weighed in at a little more than 18lbs!

Yes, 18!

We were ecstatic, of course. We never got to see him at 17, but it was a lot better.

I have been giving him more formula than what the doctor recommended, topping him off with Splash after a feeding - something the doctor shook his head about. Our dietitian said I was getting greedy, and the doctor said I should just be patient. But I thought, as long as as he is not throwing up and his tummy is taking it just fine then I would really like for him to catch up on his weight gain.

In addition to weight gain, he's also been sleeping relatively better. He still wakes up itching in the middle of the night and we are still dependent on Hydroxizine to manage the itch, but relatively better all around.

Everyone who sees him says his skin looks better, too. His speech therapist noticed that he looked plumper.

I've been feeding him round the clock every three hours, three ounces of Ele-Care each feeding. And then I try to give him Splash by mouth in between. At the end of the day, I also would feed him by tube whatever Splash left (I'd hate to throw out that expensive stuff), so he has been getting 32 ounces of formula a day. At 30 calories per ounce, he is getting 960 cals/day. Double the doctor recommended intake of 480 cals. (Personally, I thik 480 is too low for any desired weight gain, but what do I know?)

The breakouts still come and go, but they are not THAT bad. And they typically go away after a couple of days. The doctor attributes this to the fact that he is being fed hypoallergenic food exclusively. Because of this, he wanted us to comtinue doing what we are doing for another 3 weeks. Meaning, no solid food. He suspects that most of Bambino's outbreaks are triggered by allergens that we still are not aware of. Bambino doesn't seem to mind, though. What he throws a fit over is not being able to nurse from me. He remembers it from time to time and he would look at me like he felt betrayed.

All in all, the two weeks following the surgery has been really good. Skin was clearer, sleep was better - even his disposition has been sunnier. Now, all we have to do is plump up the little piglet some more!

Things Are Looking Up

It's 10:30 AM and Bambino is still asleep - for almost 12 hours now. Straight! I couldn't believe it! Sure, he whined & squirmed and cried a bit while I fed him through the tube last night, but then he settled down and went back to sleep. And this is the second night he has been sleeping so well! I am SO thrilled, considering we had the worst night ever just two nights ago when he just screamed and cried for practically 10 hours straight. Hubby and I were catatonic the morning after. And then that following night, Bambino slept from midnight to 8am - the longest time he slept, ever!

It's amazing how it could turn from worst to great in 24 hours, but I am not complaining. I am hoping, hoping, hoping that this is a turning point for him. For us.

On Monday, three days after his surgery, his skin was so clear like I've never seen before. I was too excited that I rushed him to the mall for a studio sitting - something I've always wanted to do but couldn't because there would always be flare ups and rashes somewhere in his face, arms, legs... But Monday was the best. He was also in his best disposition. He would smile for the camera like he never did before. He never paused to scratch or threw a tantrum or got irritated - it was one of the best days.

Here's a photo to prove it:

Isn't he adorable? I'm holding out on the rest of the pictures because it's intended to be a "2nd birthday" announcement for family. I just couldn't resist posting this one!

We had two clear days then he broke out into rashes again on Wednesday. It wasn't so bad but he itched a lot and didn't sleep very well. But now, this. And the best part: our Dietitian weighed him on Thursday, exactly 1 week after his surgery, and it appears that he gained 10 ounces.

I am ecstatic!

We go back to Dr. E today for follow up. We will find out if he will allow Bambino to start eating something else other than formula. We're hoping he can start eating pasta and rice, his favorites, again.

Right now, Bambino is trying to engage me in a game of hide & seek.

The G-Tube Surgery

The surgery was scheduled August 6, Thursday at 7:30 AM, but the entire process actually started that midnight before, when Bambino was supposed to start fasting six hours before the surgery. I didn't realize when I nursed him on Wednesday night that it was going to be the last time I'll ever breastfeed him. It makes me teary eyed even just writing about it now. At 1am, Hubby took him "away from me" because he usually starts rooting at around that time. We all got up at 5:30 to get ready. It wasn't easy keeping him occupied so he won't think about hunger pangs and eating.

We spent the first hour at the hospital with paperwork and listening to more instructions from the nurses. They briefed us on what was to come and what to expect, although that was probably the third or fourth time I was hearing about all those from different sources - from the doctors to therapists and nurses. That and my own researches and readings, I believe I was already well versed on the subject. We also handed over all the medications that he was currently taking.

At 7:30, Bambino was given Versed which we called the "happy pill." We were told that it's a mild amnestic and relaxant which they give to kids for separation anxieties when they are whisked away for procedures. They said we should expect Bambino to act "silly" in a little bit, like a drunk. True enough after a while, his eyes became droopy and he was smiling and making happy noises. When the medical staff came to take him away to prepare him for surgery, he smiled his drowsy smile and waved enthusiastically at us - something that will NEVER happen under normal circumstances.

At 8 am, our GI doctor, Dr. E arrived and gave us similar briefing. We also met with the surgical nurse who will be assisting him, and the Anaesthesiologist, who will be with them throughout the entire procedure. I have exhausted all my questions, but they each had to brief us for the nth time, and ask us if we had questions for them. We were told that the procedure should take an hour or less.

I went to the hospital chapel and prayed.

Dr. E came out about 45 minutes after and reported that everything went well. He showed us pictures of Bambino's insides taken by an oral endoscope. All appeared normal, he said, except for one photo of his esophageal muscles, which had ridges that could possibly indicate allergic inflammation. He took some samples for biopsy.

Afterwards, we were led to the recovery room to see Bambino. He was half asleep, groggy and crying. He wouldn't settle down. Effect of the anesthesia and the pain pill, Demerol. One hour after, we settled into our hospital room. Dr. E gave strict instructions: he was to eat nothing by mouth or by his brand new tube for about 12 hours to allow his manhandled stomach appropriate time to heal.


miserable after the procedure

It wasn't easy denying him even water. He would wake up hungry and parched and I can't do anything about it. The afternoon was tolerable because he slept most of the time and I even allowed myself a little shut eye as well. That night, he cried until he fell asleep from exhaustion but he would wake up almost every hour. At 2am after having read all the available books to him, I turned off all the lights and pulled up the blinds so we can see the moon and I told him stories about the moon. He must have been mesmerized by the sight of the moon from his hospital bed and he quieted down and went to sleep.

The nurses started giving him EleCare (a hypoallergenic, high calorie formula similar to Neocate) by the G-tube sometime after 2am. Dr. E came by to see him first thing in the morning and was pleased to see that the wound was healing nicely. The nurse rotated it and cleaned the area earlier that morning. He OKd a drink of Splash and water but nothing else. We discussed feeding plans and home care. We were going to do bolus feeding (using a syringe as opposed to the continuous-feeding machine we were currently using in the hospital.)

Just before we checked out of the hospital, Dr. E called with esophageal biopsy result. He confirmed that the inflammations are indeed allergic reactions. Because of this, he wants to put Bambino on a strict hypoallergenic formula diet for at least two weeks. That means he can only take Neocate, EleCare, Splash and Nutra. That means he will not be allowed at the dinner table during meal time.


wagon ride around the pediatric unit

After another lecture and actual feeding demo from the nurse, and after exploiting the hospital nursing pump one last time to relieve the tightening of my breasts due to lactation, we were all set to go home. Bambino didn't seem to be in any kind of pain at all. There was no need to give him Tylenol. He was happily prancing around the house and played with the dog as soon as we got home.


day after coming home from the hospital, riding on his own "wagon"

He is such a super trouper!

Surgery Tomorrow

Bambino will have the surgery to place the gastronomy tube tomorrow.

Golden $plash!

On Friday marked a little milestone that thrilled this hopeful mother. Bambino learned to sip from a straw without any aid. Consequently, this newly acquired skill made him a little more interested in his formula.He likes the novelty of the straw.

The past week, EO28 Splash is all he would drink. Like Neocate, it is nutritionally complete, hypo-allergenic and it's calorie dense at 30 cal per ounce. Unlike Neocate, it is ready to drink so it's convenient - no measuring and mixing. It is also mucho expensivo. We've been giving him samples from our Nutritionist and the doctors' offices and we are almost running out so I scrambled to go online to see where they can be purchased. My husband always goes to Amazon first and we were floored to find out that it costs $14.55 plus $11 S&H for an 8oz pack! With insurance refusing to cover it, there's no way we can afford $25 per 8 ounce.

Fortunately, it sells for a lot, lot less at the Nutricia online store at $115 for a box of 27, plus Hubby found a $25 discount coupon online bringing the cost down to about $3.33 per 8oz pack. Huge relief! And we are just as ecstatic that he is eating a lot more than his 3oz average daily intake of Neocate.

On the G-tube front, we are still awaiting the result on that one test the GI doc ordered, the result of which will aid us in our decision whether or not to place him on feeding tube.

The Weaning Plan

It has been an eventful couple of weeks. Bambino had a back to back break out, with only a day respite in between. His bowel movement is just now normalizing after a couple of weeks on MiraLax. He was given Align in conjunction with MiraLax but i'm finding it very tricky to have him take it since it doesn't dissolve in liquid.

Two weeks ago, we saw another GI doctor for a second opinion on the GI feeding. He put Bambino on Megace, a synthetic hormone (progesterone) which is usually given to patients suffering from Anorexia and AIDS. Under normal circumstances, I would never allow my baby to take those kinds of stuff, especially since its safety and efficacy has never been tested on children. But I guess we've passed "normal" now, and i'm willing to try anything before we have to drill a hole through his stomach.

But Bambino, fortunately, seems to have an aversion to anything that might harm his body. He reacted negatively to Megace. He hated the medicine; he gagged when we gave it to him. It also made him restless. He woke up in fits during the night. And it really didn't improve his appetite anyway.

We called the doctor after a couple of days to let him know that we were taking the baby off it. Incidentally, our Dietitian and Feeding Therapists both think that Megace doesn't really do anything good to most babies. Our primary GI doctor told us yesterday that he doesn't believe in it. There's just too many side effects, he said.

Yesterday, we went back to Dr. E, our GI doctor. We found out Bambino lost another precious ounce. So, we talked about the details on placing him on the G-tube. He explained the procedure to us. He answered all our questions. He knew that we are reluctant to put Bambino through that kind of surgery. Towards the end of our consultation, I asked him again if this is the only option left for us. He reiterated that the primary goal is to put Bambino exclusively on Neocate or Elecare to find out if he has been reacting to breastmilk and whatever solids we are feeding him, and to have him take more formula rather than breastmilk. And so, we could try to wean him off the breast, which we did before but without result.

We agreed to do give it one last shot and we will have to wean him cold turkey. It means I will have to "disappear" for a couple of days. It probably means letting him starve for a while but we're hoping he will take the bottle when the milk truck (that's me) is out of sight. It will ruin our weekend plans but we gotta do what we gotta do. If this doesn't work, we will have to schedule surgery by next week.

I'm praying it will work because the last option is not entirely attractive.

P.S. I'm feeling melancholic about the thought that these could be the last few days I'm going to nurse my Bambino. That's one less thing he will need me for :(

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.

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.

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.

Allergy Scare

Yesterday, I tried to poison my little one.

I came home from the gym and he came rushing to me in the kitchen. Hubby told me he didn't touch his formula while I was gone so I picked up a glass of milk from the kitchen counter and gave it to him. It is not unusual for us to put his formula in our drinking glasses so I really thought it was his formula. When the white liquid touched his mouth, he gagged and spit it out, prompting me to take a sniff from the glass. I realized right away that I gave him his brother's cow's milk. That's when it all started: his first severe allergic reaction.

I don't think he even ingested anything because he spit it out right away, but the fact that the milk touched the inside of his mouth triggered all these reactions:

He started gagging, attempting to vomit but there was really nothing in his stomach at the time. He was drooling so much. He kept his mouth wide open as if he didn't want to taste his own saliva. After gagging several times, he managed to throw up some bile. He continued to drool and was screaming the entire time. He didn't want to drink anything, not even iced water or breast milk - two things that he never refused before.

My husband, having experienced these extreme reactions before, warned me to watch for anaphylaxis: wheezing, breathing difficulty or swelling of the lips and tongue. We gave him a dose of Benadryl which knocked him out after a while. But although he was asleep in my arms, he still wouldn't close his mouth and he continued to salivate plus he would kick and scream every few minutes. He was restless.

After reading up on dairy allergic reactions online, I learned about the metallic taste and tingling sensation in the mouth that people experience during a reaction and it all made sense to me; the drooling and the open mouth.

I've never really realized how bad his allergies were until this frightening experience. I am very grateful that we didn't have to run to the ER, but I dread to think of what could've happened had he swallowed even just a drop of that cow's milk. I am glad that his senses are apparently equipped to distinguish the things he is allergic to. The experience also opened my eyes to the challeges we will continue to face in his lifetime.

Trash Truck Fridays

Bamino has always loved seeing the delivery trucks that come by our house. He insists on stepping outside whenever he hears the UPS, FedEx or the mailman trucks.

But Fridays are a special treat for him. The sanitation trucks that come by every Friday are something we rarely miss. We would sit in the front porch just watching the trucks pick up the barrels with its mechanical "arm". He would sit very still in my arms, transfixed with the sight and sounds that the truck makes. He'd refuse to go back in the house until the truck is out of his sight. Talk about cheap thrills! :)
We took these photos today as we were watching the trucks go about their business.

One of the nice, white-bearded operators even gives Bambino an extra treat by honking his horn when he sees us waiting by the front lawn, much to Bambino's delight.

Fully Booked

Our calendar is pretty crowded this week!

Monday - memorial day barbeque.

Tuesday - first session of Speech Therapy

Wednesday - Child Development;
Physical Therapy

Thursday - Feeding Therapy;
Nutritionist;
Gastroenterologist

Friday - Pediatric Ophthalmologist

Hopefully, we can squeeze in some play dates on the weekend.

Update From Immunologists

Yesterday, we were back to UCLA to see Dr. R, Bambino's Immunologist/Allergist. No good news here, but nothing unmanageable either:

• Bambino lost a few ounces compared to his last visit in March. I attributed it too the fact that he hasn't been eating much the past three weeks due to teething and break outs. Yesterday, he weighed in at 16lbs 8 oz.
  
• The doctors increased his dosage for Periactin to see if it will help alleviate the itching and maybe help with the sleep issues.
  
• They gave him a script for zinc (his zinc levels are low). We're hoping this will also improve his appetite.
  
• We found out the classes/levels of his allergies - Class 6 being the highest and 1 being the lowest in terms of reaction:

1. eggs & dairy - class 5
2. pork and beef - class 3
   
3. turkey - class 2 (he fairly tolerates turkey)

• They ordered more tests on more allergens, including some food that he's currently eating right now since we don't know for sure whether the hives and other symptoms he gets are allergic reactions or just a natural part of his disorder.
• One of my concerns on this visit is his enlarged lymph nodes on either side of his neck. He's always had swollen lymph nodes but i've never seen them THIS big, even the three docs who came in with Dr. R agreed that they're unusually big. To address this, the docs ordered another 3 weeks worth of Keflex.
  

Understandably, he was unhappy giving 7 vials of blood yet again for these numerous tests.

I Pray For Sleep

Whoever coined the phrase "sleeping like a baby" has probably never met an infant like my Bambino. He rarely sleeps for three hours straight without waking up in a bout of itch. Me and Hubby take turns pacifying and comforting him a number of times each night. We'd be so exhausted in the morning. At least I could catch some shut-eye during the day. Hubby, though, sometimes have to resort to energy drinks in order to get through the entire work day. Sometimes I feel like I'm at the end of my rope. It is very taxing. More than anything else though, I am worried about the baby. The growth hormones are supposed to be doing their jobs while he's asleep. But what if if he rarely sleeps?

Not even Doxepine, a controlled substance that was prescribed to help him "sleep like a baby" doesn't do the trick. We now alternate between four different antihistamines that's supposed to make him drowsy. Sure, it makes him sleep - but not for more that a couple hours.

The itching is very, very bad. Sometimes, he'd still rub his wrists against anything rough even when he's asleep. Restless sleep. And then he'd wake up with red, sore and sometimes bleeding hands and scalp.

In my desire to help him get more sleep, he takes his naps in my arms because he would wake as soon as I put him down. This way, he gets up to three hours of nap time (if we're lucky). My arms would be numb and I would hold off any desire to go to the bathroom, and I would be unable to pick up any calls - but if he gets decent, quality sleep, then it is all worth it.

And every night, I pray that tonight will be better than the previous night.

Vegenaise

I love mayonnaise. I put it on almost anything - eggs, fish, sandwiches, fries, - name it. I can give up sweets if I have to, but never mayonnaise. So when Bambino was tested allergic to eggs and dairy, I was left in a quandary especially since I'm still nursing him and he's supposed to be getting whatever I eat. I have been avoiding eggs since he was born.

I've been missing mayo until his Dietitian suggested I try Vegenaise. She recommended I add it to pasta and rice (since these are two things Bambino likes to eat, if he eats at all) for added calories.
I'd have to say, it's not so bad. It doesn't have the creamy flavor I like from real mayo, but it will do. Its main ingredients are canola and soy. I'm lucky, the vegan store that sells and manufactures them is just 5 miles away but they also have an online store where it's available.

http://www.followyourheart.com/

Chicken Legs

Today is the third day Bambino hasn't been eating anything but breast milk.

It's been unusually warm and I've dressed him in short sleeved shirts and shorts and yesterday, it struck me how thin he has become. We call him chicken legs now because of his slender limbs very visible in summer outfits. It is heartbreaking.

These are his photos from about a year ago:

We used to call him Fat Boy, Little Buddha, Ball of Lard, Sumo, Buddha Belly. Just look at that double chin!

And now, here are his more recent photos (I picked the ones with his legs exposed):

His head is still big, but his arms and legs are so skinny. And he could still fit in his 6-9 month size clothes.

He's got a lot on his plate right now with his teeth and a break-out and a slight fever, but I'm hoping and praying his appetite will pick up when these things blow over. Otherwise, we will have to consider nasogastric tubes - something we will have to tackle with the GI doc in two weeks.

A Challenge for the Feeding Therapist

Bambino never learned to nurse from a bottle. I've always planned to breastfeed for at least a year, but his doctors and nutritionists wanted to supplement his food intake with high a calorie formula especially since he is slow to gain weight.

But we have tried so many nursing bottles and nipples in different shapes, textures and form:


There is even one brand, Adiri, that's supposed to be an exact replica of a mother's bossom. But none of these worked.

He learned to drink from a cup early, and that's how he takes the measly 7 ounces of formula intake.

E., his feeding therapist tried all sorts of tricks today to make him eat or drink. We had carrots, tomatoes, cheerios, yogurt - he tasted a little bit of carrots and made a mess of everything else.

We tried to give him formula, apple juice, a combination of both, with ice, no ice; in five different kinds of cups and glasses, with straw, no straw...
E's patience was amazing. She even made this impromptu contraption made from a bottle especially for babies with cleft palates and a straw:


But nothing worked.

Yesterday, I kept crying in frustration whenever he turned his nose up to any food or drink I offered. He's also learned to shake his head to say "no."

And even though it wasn't necessary, I gave him a dose of Periactin last night, hoping his appetite would pick up. No dice.

So on most days, he is mostly surviving on breastmilk because that's the only thing he would take. Which leaves us and the dietitians in a quandary because they couldn't even tell how much he is really taking in. I've been tempted to refuse to nurse him and let him go hungry, hoping that he will turn to formula when he has no other choice. But I also worry that my supply will dry up and he still would continue to refuse his formula.

It is nice that there is professional help available. The Therapists that come see Bambino are Heaven-sent. But my concerns grow when even the pros run out of tricks and we're still not getting aywhere.

Tooth Erupted

So this is why Bambino has been drooling and was cranky the past few days. Poor baby.

I lost count of how many teeth he has now, he refuses to let me near his mouth.

Mommy's testing the SMS blogger uploader. Let's see how this works.

18th Month Doctor's Visit

On Tuesday, Bambino went to see Dr. C, his Pediatrician for his 18th month well-baby visit. He got four shots, two in each arm, some of which were the inoculations he was supposed to get at 12th month, but we decided to delay as long as we could as recommended by his Immunologists.

He weighed 16 lbs 11 ounces at this particular scale (4 ounces higher than 6 weeks ago) and he's 29 inches in length.

He is all clear right now, a fact that didn't escape Dr. C who told me this is the best he has seen my Bebe.

Although his growth is still off the charts, Dr. C isn't worried because his weight-length ratio is still proportionate; he thinks he really is just a small baby.
Incidentally, Hubby plotted his own growth chart when he was a teenager and it came out exactly the same as Bambino's growth curve: below the 3rd percentile. So besides the effect of Netherton Syndrome, one could also see Genetics in the works here.

Doc did give me the option of being referred to an Endrocrinologist to maybe explore the possibility of giving him growth hormones - something Hubby is skeptical about. My mother in law was also given the choice to give HGH (human growth hormones) to Hubby when he was younger but he ended up not doing it, and it was for the best because he did gr0w later on, albeit too fast that he developed a crooked spine, and ended up being average in stature at 5 feet 9 inches.

In the coming months, Bambino will start regularly seeing a Speech Therapist and a Nutritionist in addition to the services he is already getting currently: Physical Therapy (which helped him immensely), Child Development and Feeding Therapy.

Despite the itch attacks, we are very happy that his skin is clear right now. It could be the warmer temperature, it could be the Keflex that he has been taking for 3 weeks now. It could be the natural cycle of his disorder - whatever the cause, we are hoping and praying that it lasts forever.

Getting Sunburned At The Farmer's Market

He saw a real cow.















and sampled the fresh strawberries...

but it was an entirely unplanned trip, so Mommy forgot the sunscreen...

so Bambino ended up getting sunburned:















He insists on wearing Mommy's sweatband :)

New Dermatologist, New Medications

I like Dr. Hartman. He's a doctor after my own heart. He is conservative and is a fan of tried and tested "ancient" medications as opposed to other doctors who like to give us experimental drugs.

He told us first off that because of Bambino's compromised skin barrier (due to the absence of a protein called LEKTI), we couldn't use just any topical medications on him. He specifically mentioned Protopic (tacrolimus) ointment as being a big no-no because of the susceptibility of his skin and the dangers of systemic absorption. UCLA doctors has been trying to convince us to give Protopic a shot. I'm glad we didn't give in despite our frustrations with the itching and lack of quality sleep.

New products that Dr. H. wanted us to try:

Albolene - Marketed as a make-up remover, it has been around for 45 years. I like the fact that it only has 2 or 3 ingredients. No strange components that I can't pronounce, let alone understand.

Tetrix cream - Formulated for hand eczema. After a severe break out, Bambino's extremities (ie: hands, feet, scalp) are always the last ones to heal. Right now, he is mostly clear except for those three parts. His hands look like an old man's they itch a lot. I'm going to try it on him starting today.

April 18, 2009

Fluticasone Propionate Cream 0.05% - It's the generic for Cutivate, a corticosteroid that Bambino has been on for a while now which I use on affected parts of his body (but not during a severe flare up). Right now, I use it on his hands and feet in the hopes that it will help with the itching.

Four Stitches

Yesterday, Bambino had his first big booboo. He likes to push things - from toy trucks to small chairs to big chairs, and he was pushing this little chair around in the kitchen when he tripped and hit his forehead against the corner of this chair.

It bled a lot and I contemplated taking him to the ER in case he needed stiches.

But after I cleaned up the cut, I figured it was just superficial. Especially after a while when he totally forgot about it and happily went on playing with his blocks.

But when I emailed this photo to his Dad, he demanded that I take him to the ER right away. Wanting to err on the side of caution, I did what Daddy asked and we spent about three hours in the ER where he ended up getting four stitches.

We finally got home at 9:30 last night and I took this photo:



We owe him a toy firetruck (he is into trucks these days) for being a super trouper at the ER. If it was up to me, I'd just leave the superficial cut alone, but the doctor thought it'd heal better if the cut was sewn shut so...



... now he looks like a little prizefighter with a boxer's cut :)

Appointments

April 6, Monday 9:00 AM - Physical Therapy
April 8, Wednesday 10:00 AM - Child Development Specialist
April 9, Thursday 9:30 Am- First session with Feeding Therapist.

10:30 AM - Nutrition evaluation by a Registered Dietitian.
4:00 PM - Physical Therapy

April 14, Tuesday 10:00 AM - Speech evaluation by a Speech Therapist

April 16, Thursday 3:30 PM - New Pediatric-Dermatologist

Another Day With The Immunologists

After an email exchange with Dr. R, Bambino's Immunologist/Allergist at UCLA, he decided to overbook his schedule and see Bambino today on an emergency consultation. It was a stressful day. Bambino was crying all the time. He's developed an aversion to any personnel wearing a lab gown or a stethoscope around one's neck. It was difficult to have a decent conversation with the doctors because I can hardly hear them over Bambino's screams.

Dr. R ordered x-rays on his chest, sinus and neck after I told him about his cough, colds and chest congestion. The filming process was tough. He cried, kicked and screamed. The technicians had to repeat the process a couple of times because they couldn't get good quality film. It felt like we spent an hour at Radiology, his voice was hoarse by the time we stepped out. At this point, I felt like I wanted to scream myself.

We went back up to see the doc after he's read the xray results and he found out that Bambino has sinusitis. He will go on yet another three-week worth of Keflex again.

He also wrote a script for a couple of antihistamines that we could try: Allegra and Xyzal. And since we can't get an appointment with the GI doctors, Dr. R grabbed some random GI Fellow to write a script for a Zinc supplement (the GI found a slight zinc deficiency in his last lab tests).

All in all, we spent more than four hours at UCLA. Tomorrow would be another busy day with the Nutritionist and Feeding Therapist.

Current weight: 16lb 13 oz (higher than his November 2008 weight of 16lb11oz. YAY!!!)
Length: 28 inches

Itches & Congestion

March 25, 2009

So Bambino is better now for the most part. His skin is clear save for the sebhorric scalp and some dryness in his extremities. But as expected, like what happens in every cycle of break out, the itching starts. And like the other bouts with the itch, this also keeps us up at night. Bambino would wake up scratching until he bleeds. My husband and I would take turns trying to calm him down. Some nights, he would wake up every hour.

The Itch would last from one to two weeks and it's always bothersome in the sense that Bambino (and his parents) isn't getting quality sleep. Not to mention the havoc he wreaks on his skin, making him susceptible for infection. Hydroxyzine or Periactin helps little. Even the anti-depressant Doxepin offers very little relief. So I guess, like with every aspect of his disorder, we will just have to weather this one out.

April 1, 2009

To add to his misery, he also has cough and colds. I have been sick with a super contagious upper respiratory tract infection and it's really impossible for him not to get the virus considering that I nurse him four to six times a day and we're togethter 24/7. Even if I cover my facial orifices most of the time, I was betting on him getting it. So now, we are both congested and coughing out thick mucus. This is his very first bout with cough and colds, and he is not a happy camper. He is extra clingy though, which could be bad because I am sick myself.

All playdates have been cancelled. Even his supposed session with the Feeding Therapist on Thursday was cancelled. We don't want to get anybody sick.

But like the itches and everything else, this too shall come to pass.

On The Road To Recovery

Yesterday was another half day spent at UCLA to see Bambino's Immunologists. He is just bouncing back from one of his worst break out this winter so he was all clear for the doctors. Fortunately, this doctor knows him well by now. He knows the intricacies of his disorder.

Whenever we see a new doctor and he is all clear, we would make it a point to take photos with us or the doctors would be wondering what the heck do we need their services for. Sometimes, when his skin is at his clearest, it is hard to believe that it was ever really bad.

These are photos from his most recent breakout. It's hard to believe it was just a mere one week ago.




He was red and peeling all over. His skin was painful to the touch. He was so miserable. Diaper changes were not happy events. He would be crying and screaming all throughout. I had to lather him up in thick layers of Aquaphor to keep his skin hydrated and that bothered him a lot.

We found out from yesterday's visit that he has lost about 7 ounces from last month. He is now back to 16 lbs even. His weight is just sliding backwards and it's heartbreaking. One of my frustrations was the difficulty in making an appointment with the GI doctor - something he really needs right now.

The Immunologists promised to help us get in to see the GI sooner. The last time we saw the GI, he insinuated that we might have to put in feeding tubes if he goes on like this - refusing to eat and continues to lose weight.

Since one of the current major concern is the itching, which usually happens at the tail end of a breakout (similar to a wound just about to heal), the docs prescribed a new antihistamine called Periactin. This rang a bell to me. I remember taking an appetite stimulant called Periactin-Vita as a child to help me put on some weight. I told the doctors that, and they said one of the "side-effects" indeed is increased appetite and weight gain.

It's an antihistamine so it helps with his itching and runny nose caused by allergies; it makes him drowsy so it will help him sleep better; and it's an appetite stimulant!

It sounded like a magic potion to me! It addresses practically every one of our concerns right now. I am hopeful.

Here's last night's photo of him. Besides the weightloss and the night time itching, he is back to his usual sunny disposition. And Mommy couldn't be happier.



Oh, and P.S.: as I'm typing this, he is halfway through his fourth 3oz-cup of formula! That is more than what he has ever consumed in a single day, and it's only 6pm! Does this mean then that the "side effect" was working? If I can make him drink 5 cups today, I would be the happiest Mommy on the block!

The $160 Cream

Dr. Justine Park at Children's Hospital prescribed a new cream for Bambino called Dovonex. We were surprised at how much it cost - a little more than $160! Insurance covered only $56 and we paid for the rest. The doctors said it's a prescription strength Vitamin D and only to be used every four days.

We're hoping that we would see results considering how expensive it is.



These are the the current topicals that I use on him: Derma-Smoothe on his scalp, Cutivate on affected areas, Bactroban on areas most susceptible to infection (diaper area & open sores), Nystatin or Ketoconazole when there's a possibility of fungal infection - especially while he is on oral antibiotics like now. I also use Refresh and Erythromycin ophthalmic ointment on his eyes to avoid keratitis. Epiceram is another costly cream we used for a day and had to stop because it seemed to sting.

During bad break-outs, I stop using steroids or any other harsh chemicals on him because of the danger of systemic absorption due to his compromised skin barrier.

These are what I use regularly, whether his skin is clear or otherwise:




Robathol Bath Oil added to his bath water, then I lather him up generously with Aquaphor while his skin is still damp from the bath.

Fortunately, Bambino gets a free supply of Aquaphor from this great company Beiersdorf. He goes through each jar so fast because he is practically coated with it all the time!

Leaving UCLA

Los Angles Children's Hospital Lobby

I've always considered ourselves lucky because of the fact that we live relatively close to renowned hospitals like UCLA, Cedars-Sinai and LA Children's Hospital. I thought: people from all over the globe fly to these Institutions to get better care and treatment and we just drive on the 405 to get there. How great is that? Unfortunately, not everything is great - I am not entirely pleased with our experiences from these institutions.

We stopped going to Cedars-Sinai when the Geneticist we were seeing there made us wait for three hours. We ended up leaving without being seen and after we've paid our co-payment. I reported the incident to their client service department but I didn't stay long enough to find out what came out of my complaint.

I've always been vocal of my discontent about UCLA Dermatology Department's service. It is extremely difficult to get in touch with them even on urgent issues. Not one of my calls were returned. And when I raised this issue to Dr. C, the main Derm, he told me he is best contacted through email. We did get one reply to the dozens of emails we sent to him. In order to get an audience, we had to get an appointment.

Being a teaching hospital, we get different team of fellows/residents who see us before the main doctor comes in. Consequently, we have to repeat Bambino's entire "skin story" to these fellows who we jokingly called "minions" every time we go for a visit so they can brief the main Derm. The main Derm is well acquainted with my baby's issues. He has been his primary Dermatologist ever before he was diagnosed of NS. In fact, after his diagnosis, Bambino became some sort of a cause celebre at UCLA. We've been invited to a couple of their grand rounds attended by dozens of doctors. We welcomed the attention, hoping that one of those 85 dermatologists who have seen him might be able to offer Bambino a real relief from his sufferings.

Not quite. They thanked us for coming and none of them returned our calls.

Don't get me wrong. I think they are all brilliant doctors. They are probably just too absorbed in other things in their residencies to bother with just one rare genetic "orphan" disorder. They saw how NS manifests, they saw the symptoms in flesh and blood - not just photos on thick textbooks anymore - and then they move on to other more common skin problems like psoriasis. There is nothing else they could do. Besides, cases like this would probably just make .01% of their future medical practices.

I have been tempted to switch to a private Dermatologists, but my Pediatrician pointed out that it will be difficult to find a Derm who will have the experience and skill my Bambino would require.

But I've had it with UCLA Dermatology.

Yesterday, we went to see the Dermatology team at Los Angeles Children's Hospital headed by Dr. Justine Park. My husband warned me not to expect any better because this is indeed another teaching hospital, with residents coming from USC.

I laid it out straight to the first fellow wo saw us, Dr. Goli. I told the young doctor that we've been seeing UCLA Derm but that we are not happy with how they run things over there and that we are actually looking for doctors who will return our calls and won't tell us to call for an appointment when we have questions about trivial stuff like dosages. I told her that they are welcome to turn us away if they think things are not going to be any different around here. She seemed to sympathize with my concerns and she left to brief Dr. Park about Bambino's case,

Three other fellows came in with Dr. Park after a while. They were as curious as the residents at UCLA and ganged up on me and Hubby with questions. They've never seen an actual NS case before. They conceded that they cannot give us the "private practice" kind of attention that we are seeking but they did refer us to one of their USC professors who also volunteers at Children's but has a private office in the Valley closer to our place.

Before we left, we got another invitation to appear at a USC medical conference for "show & tell". They were a bit hesitant to ask us - our wariness of these institutions was probably evident in our faces - but I assured them that we still are very much willing to help out the dermatology field in any way we can.

Although an impossibility, who knows, one of these doctors will find a cure.

Mommy & Me Mondays

Today is Monday. We're supposed to go to our Mommy & Me classes but since Bambino is still under the weather, we are staying in. I am currently typing with just my right hand because I have to support him with the other. Being extra-clingy when he's sick, he lives in my arms practically 24/7. I remember the sling that I used to carry him around in and I thought it would make our lives a little easier right now


Yup, easier 'cause I can have both hands free to do stuff. Plus he likes it better because he couldn't be any closer to me this way.

So since we are missing Mommy & Me today, I thought I'd post some of the photos I took from last Monday's class:



He liked riding the "Dinos" and he finds it amusing every time the girl beside him would shriek in joy.



He'd toss those dolls around. It's his first close encounter with baby dolls.



The boys in the "kitchen". Those two boys are about six months younger than him but he is the smallest.



Finally, the parachute ride which we do towards the end of the class. This is the first time we'd done it because we would always head home an hour before the class end - in time for his afternoon nap. Last week, he slept a little early. We were late for class but we were able to stay till finish. Oh but he didn't like this parachute group ride as evident in this photo. He was screaming along with a couple of other babies who disliked it as well.

Bad, Bad Couple Of Weeks

Just a quick entry:

Bambino is currently having one breakout after another. And as if this isn't enough, he's also been having low grade fever to contend with. Two days ago, I found out what's causing the fever: upper respiratory tract infection.

Because of this, he's lost his already waning appetite. He still wants to nurse, but the congestion in his chest makes it difficult to suckle. For the second night last night, he would wake up every hour crying because he finds it difficult to breath. He wakes up the entire household with his lusty cries - I'm surprised the neighbors didn't call 911.

This is his first bout with colds and it doesn't look like it's your garden variety colds. He would probably require antibiotics just to ward off any other infections.

His appearance right now is one of the worst we've seen. Majority of his face is beet-red, along with some areas of his arms, torso and legs.

I took some photos for the new set of Derms that we're scheduled to see at Childrens' Hospital on Wednesday.

A Session With the Feeding Therapist

I didn't even know that there's such a thing. I've heard of Occupational Therapists, and apparently FT (Feeding Therapist) is a sub-specialization of OT.

So Erin arrived at 10AM last Saturday, in time for Bambino's supposed breakfast - if he eats at all. He would usually just sit on his chair and play with his dry cereal, toss occasional pieces into his mouth, and when he gets bored with them, throws them on the floor to the dog. That last one which involves the dog is the highlight of his breakfast.






So Erin observed all these while asking me and Hubby all sorts of questions from her checklist. She did say, to our delight, that Bambino isn't as complicated a case as she initially expected. She acknowledged, though, that there is work to be done.




With the State of California's empty coffers and budget cuts all over, Erin couldn't tell how soon Bambino will get the services he requires, which includes a Nutritionist and Speech Therapist, but she promised to expedite her report and hopefully, the approval.

Still Not Gaining Weight

It could be because he has four molars coming out all at the same time, but Bambino refuses to eat anything but breast milk. He used to eat okay. Not good, but at least he was eating something else other than Mom's milk.

Consequently, he only gained 4 ounces in the past month. He weighed only 16lb4oz last time we visited the Immunologist.

Last week, we went back to the Gastroenterologist. He recommended doing a procedure that would measure his caloric/energy consumption. It's a tedious process that will take 20 minutes. The GI doctor is not discounting the possibility of nasogastric tube feeding if Bambino carries on like this.

Regardless, he is still the active, rambunctious toddler that he is, sometimes I wonder where he is getting all this energy. He loves to sing and dance while watching Barney and loves to run around and play ball with the dog.

Such a super trouper!

Failure To Thrive Mode

Last Thursday, we visited Bambino's pediatrician for his 15-month check. He was due for a couple of inoculations. We delayed getting a couple of the live vaccines, as advised by his Immunologists due to the supposed allergic reactions so he won't get those until he's 18 months of age.

What shocked me at this visit was Bambino's weight. At 16lbs1oz, he is 11 ounces lighter than at his 12-month check up. I thought it was the recent bout with gastroenteritis that did this to him, but the doctors reminded me that he also loses calories and moisture through his skin. And it's true because he's been having a bad couple of months. He's had two major breakouts in December alone. His skin is weepy most winter, and the itches keeps him up most nights he rarely gets quality sleep. We were warned before that winter would be bad for his skin condition - especially the very low humidity here in SoCal.

He only grew half an inch in length since October, too.

At a Mommy & Me class, the moms were amazed when they learned that my Bambino is 15 months old especially when they see him prancing around. They would initially thought he is just around 6 or 8 months. He was the smallest baby in that class, even smaller than the 6 month-old ones.

One of the most disconcerting symptoms of Netherton Syndrome is failure to thrive (FTT) especially at the first two years. I guess we are lucky that Bambino eats and feeds ok. He could do better, but I am not complaining. He still nurses 90% of the time, he is on elemental formula (Neocate & Ele-Care) to supplement breast milk. He eats some solids but due to his vulnerability to allergies, we couldn't give him just anything. He can only eat rice, carrots, peas, turkey, cheerios and bananas. Even the GI doctor the we consulted to help him to gain weight threw in the towel saying her colleagues, the Immunologists, got her hands tied.

He is being referred to see an Occupational Therapist next, to help him eat his solid foods better. Currently, he is being seen regularly by a Physical Therapist and a Child Development specialist.

We didn't expect this journey to be easy. My hope is that Spring will be a better season for him, and it's just a few weeks away.

And if Spring would be as bad, there will always be Summer.

That Monster Itch

Bebe hasn't been sleeping much. He itches a lot. He is just getting over a double whammy breakout - one after the other - and its beginning to look like the routine is always followed by a bout of big time itch. I remind myself: you can tell when a wound is about to completely heal when it itches.

But THIS itch is causing a lot of aggravation to Bambino. He doesn't get quality sleep at all. Under normal circumstances, a dose of Hydroxyzine (Atarax) keeps everything under control but this is far from ordinary. Last night at midnight when he was screaming and making himself bleed from aggresive scratching, I turned to Doxepine.

It was prescribed by the UCLA dermatologists a couple of months ago when he had another bout with the itch, but I resisted from giving it to him. What parent would drug her baby, right? But last night, I gave in. The fact that Bambino is just recovering from weightloss due to gastroenteritis did it for me. I told myself, he wouldn't be able to gain back the weight he lost of he isn't getting quality sleep.

Doxepine put him out all right, but I was up all night fearing negative reactions. I'm glad it didn't put him out completely. He still woke every couple of hours wanting to be nursed and he still suckled the night away. I guess the drug just relaxed him to the point of drowsiness. Still, I'm hoping that would be the last time i'll ever give it to him.

We saw the Immunologists last week and Bambino had another set of blood work done. I'm still awaiting the results.

Right now, we are just trying to fatten him up like the little Porky Pig.

January in Photos

New year in Las Vegas.



Well. not exactly New Year. We drove over there when the rates have gone down right after New Years.



It must be something we ate in Vegas. We were all sick a few days after coming home. The next day after Bambino started vomiting and having diarrhea, we rushed him to the ER. They immediately put him on IV to hydrate him.



Four hours on IV apparently wasn't enough. The doctors decided they needed to keep him in the hospital. Because the hospital we brought him at initially doesn't have a pediatric floor, we had to transfer him to another nearby hospital. And for the second time in Bambino's life, he got on an ambulance ride.



He ended up staying in the hospital for 5 days. Poor baby was so bored and miserable. The highlight of his days was when Daddy took him for a ride in the wagon (while pulling along his IV contraption.)



On the 5th day, he was back to his own silly, happy self. All's well that ends well. My little Trouper defeated the gastroenteritis bug, but having lost 10% of his body weight during the bout with the disease, we have some serious work to do. We have to fatten up the little Piglet!