Saturday, May 23, 2009

Guess Who Is Back?

My Happy Baby!!!

The first 4 weeks of Rohan's life, when people asked what kind of baby he was, I assured them he was sweet and calm and content. He slept well from the get-go, never waking me 18 bajillion times a night to 'nip and nap' as his big sister used to do. He was a major cuddle bug who usually only woke once per night to eat, napped well and through all kinds of big sister-created noise during the day, and only really cried when he was hungry or needed a new diaper.

Enter week 5....and a new baby. One we loved just as much, but who was no longer 'mellow' and 'easy'. Instead, my sweet happy baby was replaced with a fussy one. One who required endless hours of bouncing on the yoga ball. One who demanded to be held for hours on end, and would trick me into thinking he was asleep, only to have his eyes fly open and a shriek of rage call me back over to get him as soon as I tried to set him down to get something done. One whose belly would gurgle and bubble so much that when you were holding him for those endless hours in a row you could feel it in his back. One who I was afraid to take out in public, for fear he would have one of 'his days' where he needed quiet and calm and lots of Mylicon and Gripe Water.

It came on gradually, and at first I chalked it up to his being a nebworn. "Don't they all go through these phases?", I would think. "He'll grow out of it at 6 weeks...8 weeks...10 weeks..." I would promise myself. And all the while I was sort of feeling sad about the loss of my happy sweet baby. I didn't want anyone to think of him as unhappy, nor difficult. So I didn't really talk about how hard some of our days were, or how miserable he seemed. For some reason, I was almost embarassed to admit it, for fear people wouldn't like him as much if he was a fussy baby. I know it seems silly, but his sister is generally known to be a sweet, happy, funny kid. I didn't want him to be THAT one...the one who was 'difficult'.

The past 2 weeks have been particularly hard. Romo had a lot more gas and fussiness, and had several days where I couldn't do anything to make him happy. I could bounce him on the yoga ball to prevent a full on crying assault on my ears, but it wasn't making him HAPPY, just keeping him sedate enough to not be woefully PISSED OFF.

Well, let me tell you...taking him to the pediatric dermatologist was the BEST thing we could have done. It just so happened his appointment fell on his WORST day yet. See, I had a wisdom tooth pulled Tuesday evening, and the pain I had after was really severe. So when my oral surgeon prescribed me hydrocodone for the pain, and when both she and the pharmacist said, "It's fine when breastfeeding as long as you try to take it after you feed him (so that by the time he eats next it'll be working its way out of the system) and don't take it for too long." I happily downed a pill that night.

There are these things kids with Masto have, and they are called triggers. Basically the term 'trigger' refers to anything that sets off a reaction in the body. Kids with Masto have confused bodies, and things that are benign and not a threat at all are seen as one by their body, and it causes the mast cells to react. But Masto kids have an excess in mast cells, and they release an excess in histamines, and these can do all kinds of ugly things, like causing gas and cramping and other pain (bone and joint pain for one...only time will tell us if Rohan is affected by things like that, since he can't tell us for now). On the list of triggers is opiates, and hydrocodone is a synthetically created opiate. So, basically, while hydrocodone is safe for MOST breastfed kids, it was probably NOT a good thing for me to take...only I didn't know that.

Anyhow. After I took that pill Tuesday night, I went to bed. I woke in the middle of the night to nurse Rohan, maybe 4 hours after taking the pill. And I believe that's the reason he had a rough day on Wednesday, which dovetailed into a VERY bad night Wednesday night and the WORST day yet on Thursday. Essentially, between midnight Wednesday night and 2:45 Thursday afternoon (his appointment time with the derm.) he didn't sleep more than maybe 20 minutes at a time. All told, he probably got 2-3 hours of sleep in 14 hours, which is NOT acceptable for a baby his age. Add to that his constant discomfort and need to be held and bounced, and we had the recipe for a bad day. By the time we got to the dermatologist, he was a screaming, crying, hysterical mess. We won't even talk about what kind of mess I was.

The good news in all this is that the derm saw him at his absolute worst, so when I told her about his spitting up and being fussy before he blisers, she believed me. And when I told him we NEEDED to try to find a way to make him feel better, she agreed. She did a quick once-over of his entire body, did a test on his spot (Darier's sign...where the area surrounding the spot reddens and the spot itself flares up when rubbed or scratched), looked at it with a special light, and diagnosed him with Solitary Mastocytoma. The EXCELLENT news is that this type of Masto almost never becomes systemic (where internal organs are affected) and won't spread to other parts of his body. The even better news is, we can somewhat treat the symptoms and work to shrink his spot.

We left with two prescriptions. First is for a steroid cream to put on the spot once per day, which we then wrap with saran wrap for 30 minutes. This reduces irritatioin and can actually reduce the number of mast cells present. After just one application, his spot was no longer red and puffy, and 3 days into it the spot is shrinking some already. The second prescription is a drug that is used to treat depression in kids and adults. In Masto patients, it's used because it's extremely effective at blocking histamines in the body. We're giving this every night to keep histamine releases in his body at a minimum. We'll take him back in 2 weeks to reasses, and if the Dr. is not satisfied with his progress, we'll consider a biopsy and some bloodwork to make sure there isn't anything else going on.

I'm hopeful it won't come to that, though. Since Thursday, Rohan has been a whole new baby. He naps well. He cries less. He smiles MUCH more often. And we have not had to use Mylicon ONE time...though we did use Gripe Water once...for hiccups. I am SO relieved to have my happy baby back!!! Here's hoping we can continue to see improvement!!!


Anonymous said...


I am so glad that the doctor was able to help and give some good news!!!

Anonymous said...

Excellent news! Adorable picture of him too, by the way :)

I hate to say you were right in a situation like this, but you were right and... following your mom instincts proved to be the best idea. I'm glad you're able to find some peace of mind through it all, finally.


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