Wednesday, March 05, 2008

Response to Grace's comment

PD reader Grace left the following comment the other day:

i had just commented on a previous post regarding soy lecithin.... this is before i read the rest of your posts regarding MSPI. wow. thanks for all of your information and for sharing your journey. the letter to the ombusman was particularly frustrating.

my son is 3 months and have had occasional blood in his diapers. my appointment with the specialist is not until april and i called to see if i could at least speak with her. basically, she said that if the blood is occasional and he's growing ok, then we can just ignore the problem. i've actually cut dairy, soy, and eggs and i have still seen traces of blood occasionally. when i told this to the specialist, she said don't worry about eliminating it because ultimately, its not that harmful. if i want to see the blood stopped, i can switch to the formulas that you had mentioned.

since it seems that you and your family had such extensive experience, i just wanted to ask for your thoughts on that before i go in for the appointment to see whether i need to pursue it further, etc. how often did the blood occur and did it affect her behavior and weight significantly?

my baby had weight issues in the beginning and that was largely due to a poor latch. right now i'm giving him breastmilk through a bottle and he's been gaining fine.

any thoughts and advice would be greatly appreciated. again, i commend you and your wife for all that you've done.

grace
Thanks for the great feedback Grace, it's wonderful to know that I've been able to help. We didn't see any weight issues with Zen Girl. We did notice some behaviour issues, but nothing serious (which caused some confusion considering how unhappy Curious Boy was). The blood was sporadic, and only in trace amounts.

My advice is as follows: if the specialist says not to worry, don't. Especially if your son is growing well and is happy. Going on a near-total elimination diet is very difficult, although it can be done - and we can help.

Have you also eliminated soya bean oil and soya lecithin? Those don't irritate kids as frequently, but can still be a concern. If you get pressure to switch to formula, try eliminating more stuff before changing tactics. Some MSPI kids react badly to the formula, and you can risk losing your milk supply.

You can always reach me privately to continue this talk at philosopherdad [at]gmail.com

Good luck.
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2 comments:

Julie said...

My daughter has an intolerance to soy, milk and wheat. She was diagnosed using atopic patch testing which has also been used to help diagnose intolerances with Eosinophilic Disorders. By the time she was tested, she was 14 months old and was sleep deprived and had many food aversions. She lived off of Ians Alphatots, pureed squash and rice cereal. Her intolerance manifested itself as very painful intestinal cramping that was so painful she could not sleep. Also she had reflux. Looking back on it, it was so obvious, but in the middle of it we missed it completely. We had eliminated all dairy, casein and whey from her (and my) diet, but the bouts of colic just kept coming back periodically and randomly. She did not gain any weight between 6 months and a year. At first it wasn't concerning since she had been in the 80%... so as she slowly slipped into the 60% and 40%, we thought it was because she was more mobile. By a year, she was labeled "Failure to Thrive". The bigger problem was the fact that she could not sleep and would scream every 3-4 hours. We were all sleep deprived.
We didn't eat much soy... but we now realize that we had been buying Gerber infant cereals... all had soy lecithin in them. Even now, the slightest trace of soybean oil or soy lecithin will cause the intestinal pain to come back. About a month ago (at 16 months old) she grabbed an animal cracker from another little girl and ate it before I could get it out of her mouth. 2 Days later she stayed up until 4am screaming. She wanted to fall asleep but was in so much pain, she couldn't. It took a week for her to get back on track. She also had up to 5 bowel movements a day and I would have to change her sheets daily because little wet patches of reflux were everywhere.

It has been hard keeping her on a milk-free, soy-free and wheat-free diet... but as a result she is now able to eat all meats and fruits (we haven't tried berries yet). We have kept her away from peas and beans since we have noticed a similar reaction with peas as with the soy. She eats avocados (a great source of fat) , squash, carrots and potatoes.

Though I tend to make most of her food myself (making and freezing muffins, chicken nuggets, etc) Sometimes it is nice to have something quick and easy. I have found a few brands that you could use: Ian's makes gluten-free, soy-free and milk-free chicken nuggets and fish sticks as well as Alphatots which she loves. Enjoy-Life has a whole line of cookies and other baked goods that are allergen free (including chocolate chip cookies) and Boars Head meats and hotdogs (except for Parmesan Crusted Ham, the Italian Roastbeef and the LondonPort Roast Beef- they have cheese) are all milk and soy free as well as gluten and wheat free.

I hope this helps expand your wife's and your reader's food choices. It was tough to maintain such a strict diet and I wish her the best.

I found that Earth's Best First cereals (in the organic section) are all milk and soy free. Also, Healthy Times makes a Wheat-Free, Dairy-Free and Soy-free teddy bear cereal that can be used like cheerios. You can serve them dry or put some rice milk on top of them.

Good Luck! Thanks for posting about this!

Michael Lautman said...

Julie,
I would love it if you would share your stories and tips on our wiki. If you are interested please visit http://milkintolerance.wetpaint.com