It's been so long since I posted and people have been asking for an update, so here's the latest to finish out the year.
Alexander had his surgery this summer to remove his tonsils and adenoids. The procedure went well but he had a VERY difficult recovery. As we suspected would happen, the surgery caused his reflux to go haywire - you can imagine the pain of stomach acid on open wounds in your throat. Immediately, though, we could hear a difference in his breathing, and we began to feel optimistic that it would help with his sleep. In turn, improved sleep could mean improved GI system. Unfortunately, neither was the case. There has only been minimal improvement to his sleep. Since the beginning of October we have been waiting for a plan. His case has gone from one specialist to another and is currently sitting on a desk at NYU Medical. Worst case - he has irreparable neurological damage from going so long so early in life with sleep deprivation. Best case - someone can help!! So....we sit and wait and make accommodations to help him feel as well as possible but still be as active as possible.
Also, following his surgery we noticed a lot of nasal congestion, watery eyes, and sneezing. We suspected seasonal allergies. It became really debilitating for him so we had him allergy tested. Seasonal allergies run in the family, so we thought certainly that was the cause. We were shocked to say the least when they all came back negative. The adenoid removal either caused him to develop or exacerbated vasomotor rhinitis. We were even more disappointed when the doctor said there is no cure and only one treatment. Well, thankfully, he has responded amazingly to the steroid spray. If he misses a day, it flares up right away, but as long as he takes it every day, he has few to no symptoms.
On the GI front....his doctor tried a med reduction in October. Prevacid is not approved for long term use, and we have to try every so often to reduce it. Well.....That.Was.Disastrous. In the end, he not only had to go back on his full (adult) dose of Prevacid, but we had to add Zantac back in. Zantac becomes ineffective over time, which is why you'll notice he goes on and off of it. It has helped to get him over this transitional hump, and we are very grateful. He will remain on it until it becomes in effective. For other moms...even if it stops being effective, there will still likely be that boomerang effect for about 2 weeks when they go off. Then it should settle back down to where it was prior to going off. So right now, other than periodic bouts of stomach pain, he's feeling pretty well.
We are very excited for Christmas and for some family staycation time. The three of us will have some relaxed family time in the coming weeks, and we couldn't be happier. Happy Holidays to all of our caring followers! Thanks for all of your love and support and we wish you all a very Happy New Year!
Friday, December 20, 2013
Saturday, April 20, 2013
Lots to report
A lot has happened since the last post. I didn't want to write a post and have it full of half information, so I waited to have something more concrete to report. Alex's reflux got really bad at night again during the past few months. We tried a number of different things to alleviate his symptoms, but about a month ago, we put him back on Zantac at night in addition to his Prevacid in the morning. It does seem to be improving things enough that we are going to stay with it for awhile.
Recently, Alex started having days where he would become lethargic, refuse food, develop bad stomach pains, and have painful muscle cramps throughout his body. This has been extremely concerning and baffled his doctor. He had a complete abdominal ultrasound, underwent a sweat test looking for cystic fibrosis and blood work run. Everything came back normal. When I talked to his doctor this week, I could hear the disappointment in his voice with the negative blood work. He was really hoping something concrete would show up - as we all were. So for now, we will just keep monitoring that and be in touch with the doctor if it continues.
In February, Alexander had his sleep study. In was a looong 8 week wait for the results, but last week we got them. Holy Moly. We knew his sleep was terrible, but it was validating to have the test results. I was worried because the night of his study wasn't a particularly bad night's sleep. After reading the results, I can't imagine what he must go through on a bad night. For 10 hours of sleep, he only had 37 minutes of REM sleep. He spent 8 hours trying to get into REM sleep and cycled through the 4 sleep stages almost 300 times. His "sleep architecture is severely disturbed" and he also has sleep disrupted breathing. Because of the breathing difficulty, he will be having his tonsils and adenoids out when school is over. The report also said, though, that the majority of his sleep trouble was NOT related to his breathing. I'll be calling the ENT next week and see if we should be seeing a sleep specialist, as well. (I didn't actually see the sleep report until we left the office). We also want to make sure this isn't going to aggravate his swallow issues or laryngospasms.
The past few weeks in particular have been very stressful ones for us, and quite the emotional rollercoaster. Right now we are just settling into the present plan. We appreciate all of the emails, messages, and expressions of concern. We are surrounded by some really great people.
Recently, Alex started having days where he would become lethargic, refuse food, develop bad stomach pains, and have painful muscle cramps throughout his body. This has been extremely concerning and baffled his doctor. He had a complete abdominal ultrasound, underwent a sweat test looking for cystic fibrosis and blood work run. Everything came back normal. When I talked to his doctor this week, I could hear the disappointment in his voice with the negative blood work. He was really hoping something concrete would show up - as we all were. So for now, we will just keep monitoring that and be in touch with the doctor if it continues.
In February, Alexander had his sleep study. In was a looong 8 week wait for the results, but last week we got them. Holy Moly. We knew his sleep was terrible, but it was validating to have the test results. I was worried because the night of his study wasn't a particularly bad night's sleep. After reading the results, I can't imagine what he must go through on a bad night. For 10 hours of sleep, he only had 37 minutes of REM sleep. He spent 8 hours trying to get into REM sleep and cycled through the 4 sleep stages almost 300 times. His "sleep architecture is severely disturbed" and he also has sleep disrupted breathing. Because of the breathing difficulty, he will be having his tonsils and adenoids out when school is over. The report also said, though, that the majority of his sleep trouble was NOT related to his breathing. I'll be calling the ENT next week and see if we should be seeing a sleep specialist, as well. (I didn't actually see the sleep report until we left the office). We also want to make sure this isn't going to aggravate his swallow issues or laryngospasms.
The past few weeks in particular have been very stressful ones for us, and quite the emotional rollercoaster. Right now we are just settling into the present plan. We appreciate all of the emails, messages, and expressions of concern. We are surrounded by some really great people.
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