Maintenance

Well, the plan we made at our follow-up in Cincinnati was short-lived. As I mentioned before, we discontinued the Flagyl and dropped to 2 irrigations a day. By Monday, just 3 days later, Landon seemed off- excessively fussy and slightly poorer appetite- and so I began watching him closely. Then on Tuesday morning he refused to eat altogether and projective vomited at about 6 in the morning. Fortunately I kept what was left of his Flagyl and so I was able to get him back on it right away. I called Cincinnati and spoke with his nurse and she confirmed that I had done the right thing in starting him back on the Flagyl, and she recommended we do 4 irrigations a day until symptoms disappear and then go back up to 3 a day. She later called back and instructed us to fill a prescription for 25 mg of Flagyl per dose (his regular dose is 37.5 mg) and said that Dr. Levitt wanted us to continue the lower dose as a maintenance medication for the next 3 months.

In a way, I'm relieved that we don't have to worry about Landon getting sick again for a while. He will be 10.5 months old by the time we discontinue the maintenance meds. He will be much bigger and stronger, plus that will be more time that he has been on donated breast milk gaining antibodies which are making his immune system stronger. The downside is that I really hate him having to take Flagyl. Studies done on the safety of it have shown that it is carcinogenic in both mice and rats. It has been shown not to be carcinogenic in hamsters, which is good, but who knows which rodent reacted more closely to how a human baby would. Plus there are risks with long-term use of any antibiotic, such as developing c.difficile (c.diff) or creating resistant strains of bacteria. So hopefully he can successfully go off the Flagyl in May when we try again. I have done some more research and have decided to start Landon on grapefruit seed extract, to see if that will help. I also want to discuss trying sodium cromoglycate. There was a study done in Finland in 2001 on using sodium cromoglycate to aid with management of recurrent and chronic enterocolitis. Even though the sample size was small, only 5 participants, 3 of them responded favorably, and so it might be worth a try.

Last week we finished all 3 evaluations for Early Intervention. The physical therapist came first, which was the therapist I was the most interested in seeing since Landon's delays are mostly gross motor. She agreed that he has hypotonia, and classified it as being a moderate degree. When you pull him up from laying on his back he has what is known as "head lag" which means that he isn't strong enough to lift his head up with his body. His joints are also hypermobile, which means that they flex more than they should because he lacks the strength to form resistance. She showed me several exercises to do with him to help him make progress towards what he should be doing. She also explained that because of the hypotonia, when he attempts to make progress towards any gross motor milestone he is at a lower starting point than a typical baby. He has to work much harder at everything, which will result in greater fatigue. He also will need more time to meet his milestones, and so he probably won't crawl or walk on time. But she reassured us that when 5 year olds are playing on the playground they aren't going around comparing the age at which they walked, and so Landon will be fine long-term, he just may not be a star athlete.

The occupational therapist came next, and she was impressed with Landon's abilities. He is functioning pretty close to age appropriately with regard to his fine motor skills. The developmental therapist also thought that he looked good, with the exception of his gross motor skills. We are meeting on Thursday to discuss what the plan will be. Landon will either go ahead and start physical therapy, or the physical therapist will come back to re-evaluate him in 2 months. He was slightly below the criteria of a 30% delay, but the physical therapist was confident that in 2 months when there are more milestones to hit, that he will miss them and then meet the criteria. Either way we have exercises to do at home for the time-being, which is what I was hoping for. So here's to hoping for an uneventful few months full of lots of progress with Landon's gross motor skills!