Saturday, February 23, 2013
Quick Update
Not much to update, everything is going about the same.. but I do have some good news to share! Landon had his last check-up with his pediatrician at the end of January, and then a week and a half later went up to see his colorectal surgeon in the beginning of February- as some may remember. He had not gained weight between the appointments and so I was beginning to get concerned. On Tuesday, I took him to get the rest of his 6 month shots (he's still running behind from not being able to receive vacinations while he was so sick the first few months of life) and he has gained a whole pound in less than 3 weeks! Other than that, not much is new, so I thought I would add some new photos.
Monday, February 18, 2013
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!
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!
Monday, February 11, 2013
Finding a balance
Thursday night we headed back to Cincinnati for Landon's follow-up with Dr. Levitt Friday morning. Just like last time, we went in and did an x-ray first, and then went up to discuss what it showed and what has changed since our last visit. The x-ray looked much better than his last. His small intestines are no longer dilated and there were no signs of enterocolitis. Dr. Levitt also did a rectal examination and Landon's sphincter is much better as well, which means that the dilations were successful.
We are continuing the dilations at least twice a day for maintenance, but also can do them as needed to help stimulate the area to move things along. We stopped the Flagyl all at once, but left with a presciption for half the dose just in case he doesn't tolerate the change. Dr. Levitt also set up a plan for tapering off the irrigations. He felt that the reason that Landon is not going on his own is because we are keeping him flushed out so often. The irrigations empty him out, and when we are doing it 3 times a day he isn't getting the chance to accumulate enough stool to feel the urge to push. The only problem with that is that Landon is still extremely prone to enterocolitis, and if things sit around for too long he gets an infection. So we have to find a balance between letting things accumulate enough that he learns to use those muscles and push, but not letting things sit around long enough to cause an infection. Dr. Levitt had us drop an irrigation, and so we are already down to two a day and will continue this for two weeks. At that point we will go down to once a day, and continue that for two weeks as well. If that goes well, then we will try to stop irrigating altogether. If at any point he starts showing signs of enterocolitis then we have to go back up to 3 irrigations a day, and then start the process of tapering off again. So we will see how that goes.
Landon is still doing well with starting solids. He has done so well that we have been able to introduce a new food every 3 or 4 days. So far all of the foods we have tried have been a success. Like I mentioned before, we only do foods from the Cincinnati "Laxative Diet" list. I make all of Landon's food which is a new adventure for me. Two of the most common culprits for causing constipation- bananas and apples- are in just about every baby food on the market. Every single combination food that I can find contains one or the other. Fruit and vegetable skins are also known to cause problems, and so when I make his food I'm able to strain everything and know that it does not contain skins. Those were the main reasons that I decided to make his food, so that he could eat a variety of foods and not be as limited by his diet restrictions. So far everything is going well with that, and I have a feeling it will get easier with time.
This afternoon Landon is having his first evaluation with Early Intervention. The physical therapist will be coming to our house to see what she thinks. On Thursday the developmental therapist will be coming, and we are still waiting on the occupational therapist to contact us, which I would imagine will be sometime this week. Landon has actually made a lot of progress over the past week with sitting up unsupported. He is sitting up without propping with his hands and holding it for 5-10 seconds, sometimes longer. He also does well sitting in his high chair at the table, but he isn't strong enough to eat in that position- he leans forward too much and food spills out of his mouth. I have to sit him in either his car seat or bouncer in order to feed him, which works at home, but it is yet another obstacle which keeps us from being able to leave the house often or for long periods of time.
Well, lunch is over for me. I will update soon on how the EI evaluations go. I hope everyone has a great week!
We are continuing the dilations at least twice a day for maintenance, but also can do them as needed to help stimulate the area to move things along. We stopped the Flagyl all at once, but left with a presciption for half the dose just in case he doesn't tolerate the change. Dr. Levitt also set up a plan for tapering off the irrigations. He felt that the reason that Landon is not going on his own is because we are keeping him flushed out so often. The irrigations empty him out, and when we are doing it 3 times a day he isn't getting the chance to accumulate enough stool to feel the urge to push. The only problem with that is that Landon is still extremely prone to enterocolitis, and if things sit around for too long he gets an infection. So we have to find a balance between letting things accumulate enough that he learns to use those muscles and push, but not letting things sit around long enough to cause an infection. Dr. Levitt had us drop an irrigation, and so we are already down to two a day and will continue this for two weeks. At that point we will go down to once a day, and continue that for two weeks as well. If that goes well, then we will try to stop irrigating altogether. If at any point he starts showing signs of enterocolitis then we have to go back up to 3 irrigations a day, and then start the process of tapering off again. So we will see how that goes.
Landon is still doing well with starting solids. He has done so well that we have been able to introduce a new food every 3 or 4 days. So far all of the foods we have tried have been a success. Like I mentioned before, we only do foods from the Cincinnati "Laxative Diet" list. I make all of Landon's food which is a new adventure for me. Two of the most common culprits for causing constipation- bananas and apples- are in just about every baby food on the market. Every single combination food that I can find contains one or the other. Fruit and vegetable skins are also known to cause problems, and so when I make his food I'm able to strain everything and know that it does not contain skins. Those were the main reasons that I decided to make his food, so that he could eat a variety of foods and not be as limited by his diet restrictions. So far everything is going well with that, and I have a feeling it will get easier with time.
This afternoon Landon is having his first evaluation with Early Intervention. The physical therapist will be coming to our house to see what she thinks. On Thursday the developmental therapist will be coming, and we are still waiting on the occupational therapist to contact us, which I would imagine will be sometime this week. Landon has actually made a lot of progress over the past week with sitting up unsupported. He is sitting up without propping with his hands and holding it for 5-10 seconds, sometimes longer. He also does well sitting in his high chair at the table, but he isn't strong enough to eat in that position- he leans forward too much and food spills out of his mouth. I have to sit him in either his car seat or bouncer in order to feed him, which works at home, but it is yet another obstacle which keeps us from being able to leave the house often or for long periods of time.
Well, lunch is over for me. I will update soon on how the EI evaluations go. I hope everyone has a great week!
Tuesday, February 5, 2013
A little bit of everything
If you made it over here, then I see that you found that I moved Landon's Caring Bridge. Since we only have the internet on my phone, this makes it easier for me to update more often since Blogspot offers a mobile template. Also, I like the comment feature on the posts in case there is anything anyone would like to share.
Landon is doing okay lately, not really good or bad either one. He is still eating better, and probably gaining weight and so that part is good. We have introduced two different solids so far. Even though we will only be using foods selected from Cincinnati's 'Laxative Diet' list, I was still paranoid about food causing constipation. For that reason, we started with prunes. They may have had a little bit too much of a laxative effect, as they ran through him in less than 2 hours. I know that is good that he was able to pass them on his own, but I'm unsure if he was able to gain any nutrition or calories in that short of a transit period. Next was green beans, and last night was the first time that he tried them. He had an inconsolable period of crying from 9-10 last night, but that is something that happens from time to time anyway and so it is too soon to tell if it was from the food. I just fed him green beans again about 30 minutes ago and so by tonight I will have an answer.
Earlier this afternoon I met with the service coordinator from Early Intervention. We were assigned therapists for developmental, occupational, and physical therapy that will be contacting me to come seperately to evaluate Landon. If he exhibits a 30% or more delay in two areas then he will be eligible to receive therapy in our home for only $30 a month. If he doesn't qualify, then I will use his prescription for OT and PT and get him therapy privately, but that means more time off work to get him there and it will probably be much more expensive.
On Thursday night we are leaving to go back up to Cincinnati for another follow-up. They are doing a repeat abdominal x-ray and discussing what has happened since our last visit. We will be discontinuing the antibiotic that Landon has been taking for the last month, but I'm not sure if we will be stopping right away or doing it gradually. I also want to discuss why Landon is having so many issues with the affected portion of his intestines removed. It is normal to have some issues post-op, but not this many and to this extent. When he still had his ostomy he also struggled with enterocolitis, which is very rare. So I feel like there is something more going on. I have been doing a lot of research on chronic/recurrent enterocolitis and the outcomes. I found an old post from several years back from a parent that said that her daughter struggled with issues like that for 5 years before they discovered she had damaged connections from her small to large intestines. That got me thinking about an incidental finding in Landon's upper and lower GI studies done in July. We discovered that he had a mobile cecum. It isn't exactly rare, approximately 15% of us have a mobile cecum and have no idea. It isn't known to cause problems in the general population, but who knows if it causes problems when it exists along with Hirschsprung's. If anyone knows, it would be Dr. Levitt and so I plan on bringing it up. I'll try to update this weekend on what we find out in Cincinnati.
Landon is doing okay lately, not really good or bad either one. He is still eating better, and probably gaining weight and so that part is good. We have introduced two different solids so far. Even though we will only be using foods selected from Cincinnati's 'Laxative Diet' list, I was still paranoid about food causing constipation. For that reason, we started with prunes. They may have had a little bit too much of a laxative effect, as they ran through him in less than 2 hours. I know that is good that he was able to pass them on his own, but I'm unsure if he was able to gain any nutrition or calories in that short of a transit period. Next was green beans, and last night was the first time that he tried them. He had an inconsolable period of crying from 9-10 last night, but that is something that happens from time to time anyway and so it is too soon to tell if it was from the food. I just fed him green beans again about 30 minutes ago and so by tonight I will have an answer.
Earlier this afternoon I met with the service coordinator from Early Intervention. We were assigned therapists for developmental, occupational, and physical therapy that will be contacting me to come seperately to evaluate Landon. If he exhibits a 30% or more delay in two areas then he will be eligible to receive therapy in our home for only $30 a month. If he doesn't qualify, then I will use his prescription for OT and PT and get him therapy privately, but that means more time off work to get him there and it will probably be much more expensive.
On Thursday night we are leaving to go back up to Cincinnati for another follow-up. They are doing a repeat abdominal x-ray and discussing what has happened since our last visit. We will be discontinuing the antibiotic that Landon has been taking for the last month, but I'm not sure if we will be stopping right away or doing it gradually. I also want to discuss why Landon is having so many issues with the affected portion of his intestines removed. It is normal to have some issues post-op, but not this many and to this extent. When he still had his ostomy he also struggled with enterocolitis, which is very rare. So I feel like there is something more going on. I have been doing a lot of research on chronic/recurrent enterocolitis and the outcomes. I found an old post from several years back from a parent that said that her daughter struggled with issues like that for 5 years before they discovered she had damaged connections from her small to large intestines. That got me thinking about an incidental finding in Landon's upper and lower GI studies done in July. We discovered that he had a mobile cecum. It isn't exactly rare, approximately 15% of us have a mobile cecum and have no idea. It isn't known to cause problems in the general population, but who knows if it causes problems when it exists along with Hirschsprung's. If anyone knows, it would be Dr. Levitt and so I plan on bringing it up. I'll try to update this weekend on what we find out in Cincinnati.
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