Week On the Go
We have had a busy week, with lots of doctor's appointments.
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On Monday, Baby E had a pediatrician appointment for her 18-month checkup. I made sure I had my purse by the door and clothes ready the night before, but when we went to leave my keys were not in the house where I put them.
After scouring the house several times over, I finally had to call and reschedule the appointment for the next day. I finally found my keys under the passenger seat of the van. They had apparently fallen out of my purse on the way to or from church on Sunday.
Tuesday, of course, we had the rescheduled appointment. Dr. B said that Baby E looked great, was growing well (staying at 50th percentile) and obviously healthy. He said to keep doing what we're doing with avoiding her problem foods, and commented that her level of sensitivity is the most reliable test we have for figuring out her allergies/intolerances.
Since we were out and about anyway, we went Kosher for Passover shopping Tuesday afternoon, which I've already blogged about.
Wednesday M&M and AJ had their yearly checkups. Dr. B said that they also seem healthy and are staying on their growth curves, although at much lower percentiles. M&M weighs 30 lbs and AJ 38 lbs at ages 4 1/2 and 6. They're certainly not lacking developmentally at all.
Today we drove over to the Children's Hospital to meet with the GI specialist nurse practitioner, the speech and swallowing therapist, and the nutritionist.
The nurse practitioner said that Baby E's stool test came back positive for lactose, so she's definitely dairy-intolerant. No wonder the "safe" yogurt was giving her problems.
Given Baby E's history and pattern of reactions, the NP feels that other sugars may be an issue too. So we will probably need to limit all sugars, including fruit and fruit juices--"sugar is sugar," she said. Hopefully she will grow out of this between ages 3 and 5. If kids don't grow out of it by age 5 they are much less likely to do so after that.
I still need to find out exactly what "limiting" sugars looks like, and whether or not I need to worry about sweet/starchy vegetables too. Just what we need--more dietary restrictions.
Both the NP and Dr. B suggested that the older girls' frequent stomach aches and diarrhea could be dairy-related also. We don't have many dairy products in the house, but we do allow the girls to have occasional dairy products and use butter on their bread. It doesn't seem often enough to be the cause of their stomach issues, though. We're also supposed to keep an eye on fruits, other sugars and any other possible food intolerances for them. Better record-keeping should help to sort it out.
I did ask the NP about the possibility of other eosiniphilic disorders, and asked about "leaky gut" and Candida as possible underlying issues. I really appreciated the way she took my questions seriously and explained with each one why she did not feel it was indicated in Baby E's case.
She looked at the photos I'd brought of Baby E's rashes and facial swelling, and felt they were significant. She is referring us to a dermatologist who should be able to rule out possibilities like mastocytosis and histamine sensitivity.
Gastrointestinally, the NP seems to feel we've figured out what's going on satisfactorily. We're supposed to keep E on the reflux medicine for a year and then try weaning her off it to see if she can do all right without it or not. I feel comfortable with that approach. It's nice to be done with seeing the GI specialist and with all the testing for GI issues now.
The speech and swallowing therapist was happy that Baby E was doing so much better, too. He said that he'd like us to wait a month or two until cold and flu season is over, and then gradually start weaning her off the thickener. Hopefully the aspiration will have resolved itself by then and she'll be able to drink normal fluids again.
The nutritionist discussed Baby E's diet with me and decided that she's probably getting enough of everuthing except calcium and iron. I'm supposed to work on finding supplements for those.
She was amazed at Baby E's issues and the way we have to handle them. She commented, "I should use you as a resource!" I said I'd be happy to help anyone with similar issues, and gave her the web address for Restricted Gourmet. I've thought of the possibility of starting a local support group for allergy/intolerance at some point, but it's not as though I'm in need of more demands on my time and energy at the moment. Maybe someday.
The nutritionist also suggested we try an elemental formula for Baby E--even if not to wean her completely, to have available as a supplement or for the times I accidentally eat one of Baby E's allergens and contaminate my milk.
She gave me samples of both Elecare and Neocate to try, although she thought it likely Baby E may not tolerate them. They both contain corn and soy, and Neocate also has coconut oil. Although the proteins are supposed to be completely denatured, it seems that Baby E may have a Non-IgE intolerance of some sort that might not be dependent on the presence of an intact protein to cause a reaction. Not to mention that corn proteins are apparently unusually difficult to completely hydrolyze--scientists found intact corn proteins in the supposedly hypoallergenic Nutramigen when trying to figure out why a few kids were having reactions to it and other hydrolyzed formulas.
This is the type of situation where an in-office food trial would be really nice.
There's more to tell about today, but I'll have to write about it later.
#######################
On Monday, Baby E had a pediatrician appointment for her 18-month checkup. I made sure I had my purse by the door and clothes ready the night before, but when we went to leave my keys were not in the house where I put them.
After scouring the house several times over, I finally had to call and reschedule the appointment for the next day. I finally found my keys under the passenger seat of the van. They had apparently fallen out of my purse on the way to or from church on Sunday.
Tuesday, of course, we had the rescheduled appointment. Dr. B said that Baby E looked great, was growing well (staying at 50th percentile) and obviously healthy. He said to keep doing what we're doing with avoiding her problem foods, and commented that her level of sensitivity is the most reliable test we have for figuring out her allergies/intolerances.
Since we were out and about anyway, we went Kosher for Passover shopping Tuesday afternoon, which I've already blogged about.
Wednesday M&M and AJ had their yearly checkups. Dr. B said that they also seem healthy and are staying on their growth curves, although at much lower percentiles. M&M weighs 30 lbs and AJ 38 lbs at ages 4 1/2 and 6. They're certainly not lacking developmentally at all.
Today we drove over to the Children's Hospital to meet with the GI specialist nurse practitioner, the speech and swallowing therapist, and the nutritionist.
The nurse practitioner said that Baby E's stool test came back positive for lactose, so she's definitely dairy-intolerant. No wonder the "safe" yogurt was giving her problems.
Given Baby E's history and pattern of reactions, the NP feels that other sugars may be an issue too. So we will probably need to limit all sugars, including fruit and fruit juices--"sugar is sugar," she said. Hopefully she will grow out of this between ages 3 and 5. If kids don't grow out of it by age 5 they are much less likely to do so after that.
I still need to find out exactly what "limiting" sugars looks like, and whether or not I need to worry about sweet/starchy vegetables too. Just what we need--more dietary restrictions.
Both the NP and Dr. B suggested that the older girls' frequent stomach aches and diarrhea could be dairy-related also. We don't have many dairy products in the house, but we do allow the girls to have occasional dairy products and use butter on their bread. It doesn't seem often enough to be the cause of their stomach issues, though. We're also supposed to keep an eye on fruits, other sugars and any other possible food intolerances for them. Better record-keeping should help to sort it out.
I did ask the NP about the possibility of other eosiniphilic disorders, and asked about "leaky gut" and Candida as possible underlying issues. I really appreciated the way she took my questions seriously and explained with each one why she did not feel it was indicated in Baby E's case.
She looked at the photos I'd brought of Baby E's rashes and facial swelling, and felt they were significant. She is referring us to a dermatologist who should be able to rule out possibilities like mastocytosis and histamine sensitivity.
Gastrointestinally, the NP seems to feel we've figured out what's going on satisfactorily. We're supposed to keep E on the reflux medicine for a year and then try weaning her off it to see if she can do all right without it or not. I feel comfortable with that approach. It's nice to be done with seeing the GI specialist and with all the testing for GI issues now.
The speech and swallowing therapist was happy that Baby E was doing so much better, too. He said that he'd like us to wait a month or two until cold and flu season is over, and then gradually start weaning her off the thickener. Hopefully the aspiration will have resolved itself by then and she'll be able to drink normal fluids again.
The nutritionist discussed Baby E's diet with me and decided that she's probably getting enough of everuthing except calcium and iron. I'm supposed to work on finding supplements for those.
She was amazed at Baby E's issues and the way we have to handle them. She commented, "I should use you as a resource!" I said I'd be happy to help anyone with similar issues, and gave her the web address for Restricted Gourmet. I've thought of the possibility of starting a local support group for allergy/intolerance at some point, but it's not as though I'm in need of more demands on my time and energy at the moment. Maybe someday.
The nutritionist also suggested we try an elemental formula for Baby E--even if not to wean her completely, to have available as a supplement or for the times I accidentally eat one of Baby E's allergens and contaminate my milk.
She gave me samples of both Elecare and Neocate to try, although she thought it likely Baby E may not tolerate them. They both contain corn and soy, and Neocate also has coconut oil. Although the proteins are supposed to be completely denatured, it seems that Baby E may have a Non-IgE intolerance of some sort that might not be dependent on the presence of an intact protein to cause a reaction. Not to mention that corn proteins are apparently unusually difficult to completely hydrolyze--scientists found intact corn proteins in the supposedly hypoallergenic Nutramigen when trying to figure out why a few kids were having reactions to it and other hydrolyzed formulas.
This is the type of situation where an in-office food trial would be really nice.
There's more to tell about today, but I'll have to write about it later.
Labels: allergies and adverse reactions, health issues, just life, muddling motherhood
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Posted by purple_kangaroo at 6:47 PM[Permanent link]
5 Comments:
Hope they all go well! :)
Maybe you can arrange to do the food trial at the nutritionist's office at the hospital, with the ER on alert?
I'm glad you're getting good news and positive reinforcement from these doctors.
I like these doctors!
I left a longish comment on your most recent post - had an idea of using the KforP label to find lists of things that are likely "safe".
(Genevieve - cool, I just picked that name for our next baby girl! http://www.catholic-forum.com/SAINTS/saintg10.htm)
Whenever I lose something important, I always find that St. Anthony of Padua will help me find it, if I ask him and listen to God! Perhaps, his prayers could help you find answers, too...
Love, Colleen ;-)
Thanks, chaoticfamily.
Liz, that's a good idea. I'm thinking I'll wait a while to trial it, though.
Genevieve, I like them too! And the KforP ideas were helpful; thanks.
Colleen, are you expecting another baby girl? Or just planning for the future?
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