Saturday, January 13, 2007

Doctors appointments and meds, OH MY!

Sorry for the long silence in between posts. Winter quarter started back in full force for me on the second and I feel like I haven't stopped since. I'm going to focus this post on Carson since most of the past two weeks have been spent hopping back and forth to various doctors offices, pharmacies, and radiology departments for a very active 3.5 year old.

ADHD- Okay, on the ADHD front, we have been suspecting that Carson has been having hallucinations or psychosis as a side effect from his Adderall for a few months. The side effects started getting worse and Carson was seeing bloody ghosts, bunnies attacking him, clapping gloves under his bed, etc, etc. His appetite dropped off almost completely. He lost 2 pounds. It was time to figure out something else for his ADHD. Our pediatrician consulted with one of the pediatric psychiatrists at Children's Hospital who agreed that Carson needed taken off the Adderall immediately and needs a consult/evaluation due to the complexity of ADHD and Sensory Processing Disorder. So, we take Carson off of the Adderall (10mg of Adderall XR in the mornings and 5mg of normal Adderall in the afternoons) this past Tuesday. He also started on Prozac to help with his extreme anxiety involved with going to bed and sudden abandonment issues. The first two days without the Adderall were a bit more active than normal but tolerable none the less. Then came Thursday and Friday.....better known as the days from HELL. Carson was uncontrollably impulsive, violent, hyperactive, and miserable. He could not stop moving. He spun for over an hour followed by 90 minutes of running from our front door to our back door. I needed a few beers. Carson was a serious danger to Eli and was adding new bruises to himself with his overactive and unsafe behavior. We gave him half a dose of Adderall this morning and he was at least tolerable and not unable to function today. He goes to the Behavior Clinic at Children's Hospital on 2-12 for a medication adjustment and further screening.

SPD- Carson's oral sensory input needs are increasing ten-fold. The child is chewing on everything and anything he can find. He wants us to buy him a chewie because he has one at school. His spinning has increased and his sensitivity to tags and clothing is getting worse. The good news comes from the bathtub. He is loving bathtime now and no longer screams in terror when you tell him that he is dirty and needs cleaning. We are looking into bumping his OT up more times a week.

Medical- We went to the ENT the first week of January and Carson is getting his tonsils and adenoids out. He is also getting tubes in his ears due to having 4 severe ear infections in the past 3 months including 1 perforation and 1 near perforation. This has caused some mild hearing loss for Carson and needs to be treated as soon as possible. The ENT was also quite concerned at the number of times Carson gets croup or croup like symptoms/cough. At 3.5 years old, croup should be a rare occurrence, maybe once a winter. Carson had croup from September until the end of November and three times since then. This led the ENT to order an airway fluoroscopy test to look for subglottic stenosis. Carson had the test on Tuesday morning. They didn't find subglottic stenosis but instead an "irregularity of the trachea". This could be one of many things. A cyst on his trachea, a papiloma, a hemangioma, or scar tissue caused by being intubated at birth. Carson now has to have a laryngoscopy and bronchoscopy to see exactly what this irregularity is. If it is a cyst or a papiloma, his throat surgeon will just cut it out during the bronch. If it is a hemangioma, they will leave it alone unless it is obstructing too much of his airway b/c of Carson's risk of Von Willebrand's Disease. If it is scar tissue, they will evaluate the severity and then schedule surgery based on the results. It can be a simple as a few laser cuts along the scar tissue to as serious (and terrifying) as a full tracheal reconstruction and a tracheotomy for at least a month! Carson will have a sleep study at Children's Hospital prior to his tonsil and adenoid surgery/tubes to make sure his sleep apnea is only caused by their enlargement. The bronch will most likely be before his T&A and tube surgery since his airway takes priority. All this is scary but we want our baby fixed! The great news is that Carson's asthma is finally under control with the use of Flovent twice a day, Singulair at night, and Albuterol as his rescue medication. YAY for asthma control and no more wheezing!!

School- Carson continues to adore preschool. His teachers Ms. Linn and Mrs. Lippert are amazing and continue to stimulate his environment in just the right ways. Every morning Carson wakes up and runs into our room excited to get dressed for school. He plays hide and seek with me while we're waiting on the bus in the morning and is all smiles when we pick him up at the bus stop at lunch. We are incredibly lucky to have a program like this special needs preschool in our school district. Carson has learned so much intellectually and socially. He is a different kid than 6 months ago and is constantly astounding us with his abilities and sense of humor. The tough days are tough but he is a great kid with a personality that shines.

I'll end with a quote from today in the car. Carson was just chattering in the backseat as he always does when all of a sudden this comment popped out....

"Mommy, I won't be able to add anymore if they take my adenoids out. That makes me sad."

Ahhhh.....he kills me every time!


Amanda said...

That last comment made me laugh - how cute! I will be praying that you are able to figure out how to adjust his meds and that minor to no surgery is needed for his trachea and after all this I hope you can get a reprieve from doctors visit :-) Sending loads of Hugs and Prayers!

Sarah said...

I'm impressed, Carson knows how to add already? LOL, he's is such a sweetheart. I am sorry to hear about all the issues w/ meds/appts/surgeries/etc. I just posted a long update on our "medical complexities", so I totally feel for you. I will keep your family in my prayers.

The Preemie Experiment said...

Ahhh... the med game. Hope it all gets straigtened out soon. My daughter had the same horrible reaction when she was put on Zoloft. She ended up on Tenex which was wonderful, until she started feeling dizzy from low BP.

Her anxiety is out of control again and we are headed back to the psychiatrist to see what roller coaster of med we are headed on.

Good luck

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