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.