Monday, October 24, 2005

GI Update

We had our GI appointment Friday and it went as I expected. I was surprised I liked the doctor so much. From the name I couldn't tell if it was a man or woman. I was relieved it was a young (pretty) woman. I normally prefer male doctors but when breastfeeding is involved I prefer a woman, although there are plenty of women not very pro-breastfeeding.

She took history of my eating habits, how often/long J eats, what his elimination is like, his mood, other symptoms etc. She did a physical exam and said he has great skin, repeatedly kept saying how content he was (not relevant but never get sick of hearing it). She said he is really healthy and growing great. Never had doubts this big boy was growing.

She tested his stool and said whatever I've been doing is helping because while there was traces of blood (not visible to the eye in this particular diaper), normally it reacts by turning bright blue but his was very minimal, or something like that. Her point was, he isn't that severe. She confirmed there are no bacteria or parasites, and this is allergic colitis. Is it wrong I was praying for bacteria that could easily be taken care of by a magic pill and I could go on my merry eating way? No such luck.

She said she did not feel he needs any kind of medication or evasive testing, formula isn't necessary now since he is thriving so well and its "advantageous I keep breastfeeding." Yay, what I wanted to hear.

She instructed me to do diet elimination for 8 weeks before we re-evaluate. She said NOT to worry about blood or mucous during the 8 weeks because it will require at least 8 weeks to heal. And if during the 8 weeks, his stool gets back to the proper seedy consistency and remains consistently good, NOT to introduce any foods until AFTER the 8 weeks. (Patience isn't one of my stronger characteristics!)

The diet she recommended is what I expected. She gave me a list to exclude (dairy/soy/eggs/corn/wheat/peanuts) She said meats, vegetables, fruits and spices are OK. Also anything rice, encouraged me to drink Rice Milk since it's vital for us breastfeeding moms to get our calcium and proper nutrients. She didn't feel I need to be as extreme as I am as I'm not doing beef, pork, chicken or a variety of fruits/veg/spices or worry about all the cross-contamination as in the rice milk.

Regardless of what she said about the diet, I am going to stay more hardcore than what she recommended, just because I don't want to go 8 weeks with no improvement then have to eliminate more and do another 8 weeks. I rather get it all out of the way up front, especially since I've already started. I've been doing diet elimination for sometime but I keep learning I wasn't very good at it (I.e. the probiotics I was using to help heal his gut contained ingredients he shouldn't have) so my official "start date" is 10.22. Hopefully I'll be able to challenge in new foods in 8 weeks. I was eating many more things before anyway as you know and kept seeing reactions which is why I've eliminated everything. The day after I ate oats and barley, he was really bad. Got rid of those. The day after I ate pork and broccoli he was really bad, got rid of those. Now I did add rice back because I learned that Rice Milk is risky, especially since it contains other ingredients so I'm going to blame Rice Milk for our rice issues and assume pure rice is OK. But if there are still issues that is the next thing to go. Surprisingly reactions to rice are pretty common despite many doctors denying rice would cause reactions. Yea, tell that to the mom's on my POFAK forum who only learned their babies had food allergies once they started solids and had to go to the ER within 2 hours of starting their first solid...rice cereal.

Anyway...so, I'm staying on my limited diet of all-natural turkey, sweet and yellow potatoes, yellow and green squash, rice (including oil, flour, syrup, pasta, rice cakes but no rice milk yet) sea salt, olive oil and pure cane sugar. Rice milk might be one of my first trials if we ever get J baselined again.

Now here is where I go into a shame-spiral and get all pessimistic and shit:

I've learned a lot since joining the POFAK group. Maybe too much and it's causing extreme paranoia. Bryan thinks I'm not being optimistic, and maybe it is my natural tendency to look at the worst case scenario, but I like to think I'm just getting informed of other *possible* outcomes. I know doctors are the "medically trained professionals" but I never have much faith in them and these parents have experienced it and are dealing with it first hand. That has more weight in my book than what any doctor may have "read" about something. Another strike against us, that I've recently learned (why I was just told this now, I don't know!) Bryan's cousin has a life-long peanut allergy and his uncle developed allergies to dairy and soy but not until his adult life. So guess we have some sensitivities floating around. It would have been helpful to know this so when doctors ask if we have anything like this in our family I could have said yes. Maybe they would have taken more notice.

Looking back, I'm unhappy with our visit to the allergist. I've since learned that allergy tests on a 2 month old are never accurate. Usually they will always test negative until they are at least 1 year old. Never was that mentioned to me that could be the case. Why bother testing then, or at least tell me that it may not be accurate. I feel I was led to believe he didn't have food allergies. It was implied this was a very common infant dairy/soy protein intolerance and most likely he'd outgrow it by 6 months, maybe a year. I've learned on the forums, that MOST of these kids on here test negative to food allergies but have severe reactions (even at 5 years old!) I was never explained the difference between non-IgE and IgE reactions and that non-IgE will never show up on a test but it's still a "food allergy." That's what scares me the most is that this can go on for years and get progressively worse. Now I'm hearing a year is being optimistic especially if multiple foods are involved. In his defense, I'm sure he sees a million cases a year where it is something minor like that, but I still feel he could have prepared me for the other side of this.

The GI doc said once the 8 weeks are up, if all is well we can introduce solids (rice cereal) to J since he'll be 5 months old. I didn't get into it with her that I will NOT introduce solids before 6 months. Never planned to, food allergy or no food allergy. And depending on how things are going, I may even follow the American Academy of Pediatrics 8 month old recommendation for kid’s signs of food allergies. I will however let him get used to eating from bowls and spoons at 6 months by giving him breast milk or water in bowls, regardless if he's getting solids or not to prevent him from developing a gag reflex. That's the last thing we need!

Long story short, I'm still where we were at before Friday. I did like the fact she kept driving home waiting the 8 weeks because I am way too impatient with all this shit.

So there you have it. We're still in the same shitty situation. I can't help feeling I got shafted in this breastfeeding thing. I thought getting past the first extremely painful 8 weeks would be our biggest hurdle. Amazing I've still managed to turn into a borderline breast feeding nazi. I know I should be thankful he is so healthy and if food allergies are our only problem then we are very fortunate.

A few things this diet has taught me...
1. If you are desperate enough for something sweet, 1/2 cup mashed sweet potato mixed with 1/8 cup pure cane sugar spread warm over Lundberg Brown Rice Organic Rice Cakes are quite tasty.
2. 1/4 cup olive oil, 1/2 cup pure cane sugar, 1/2 tsp baking soda, 1/2 tsp sea salt and 1 to 1.25 cups rice flour does NOT make good sugar cookies no matter how desperate you are, although others claim to like them just fine.
3. Nobody will EVER remember you are on such a strict diet
4. People will ALWAYS try to suggest possible things for you to eat
5. You can get very grumpy and resentful of others
6. But one look at your baby's face makes it worth it
7. Most Dr's don't have a clue unless they have experienced or had more then one patient with "complicated" problems.
8. That puts a lot of pressure on you to figure all this shit out.
9. And that is a lot of pressure.
10. Again, one look at your baby makes it all worth it.

8 Comments:

Blogger Melinda said...

wELL SOUNDS like you may have found a great GI DR. Thats always good. Hopefully he won't have these allergies when he gets older.

9:48 AM  
Blogger fuzzypeach said...

Glad she was ok with you wanting to continue breastfeeding, and I agree with you about the 'trained medical professional' thoughts. They do shit like that all the time.

11:54 AM  
Blogger Anne said...

Cara! Everything you said about doctors rings true with me. Your recent experiences and especially the crap with the allergist just confirms it. The societal problem is that we are told when we are little that docs know everything and that we should obey them, not question them, and that since we aren't drs ourselves that we have no right to information. Now as adults we can see thru the BS. They are just people. Just as a plumber is stil a person. I am glad you are so strong willed as to demand answers and tho this diet has got to be very difficult for you both, I know you'll accomplish all that you need to. Just keep looking at the horizon and imagine how good all of these things will taste when you can eat them again.

1:44 PM  
Blogger Kira said...

i thought of a good question for your drs . which might allay (or not) some fears you might have. perhaps you could ask them what PERCENTAGE of babies with allergic colitis end up having something that is more long term. if it is one in 100, that might help you relax a bit. if it is 1 in 5 then that won't help, but just an idea. of course, that is if they know, which they might not.
I really wish you the best for all the hard work you are doing. Lucky J that you care so very much.

4:41 PM  
Blogger dakotablueeyes said...

I need you here to whip my ass into shape, I haven't been in my prepregnancy jeans since having my daughter 6 1/2 years ago.
Making rounds to let everyone know my new blog address. http://whatssonmymind.blogspot.com/

6:56 PM  
Blogger jenlei2004 said...

Cara, I used to blog while I was pregnant but can not find the time lately. I decided to read your recent blog from the children with food allergy board. I could have not said it better myself! I feel exactly the same as you do. I am 29 years old and really believe in attachment parenting. My husband and I am feeling just the way you do about physicians. I tell my husband all of the time that I just want to go jump off of a cliff because this is so frustrating. Hang in there...our babies have to get better, Right?? What would have been our options 50 years ago when there were not special formulas to go to? We would have to just figure it out. It does make it all worth it when you look at their face. If we make it through this and our babies heal we will feel so accomplished!! Hang in there!!

Jennifer and Logan 5-25-05

7:18 PM  
Anonymous Carol said...

Hang in there, Cara! There's sure to be light at the end of the tunnel very soon :)

9:13 PM  
Blogger Mrs. Flinger said...

Sending lots of hugs your way. Praying for a fast eight weeks and total healing. Your diet sounds strict, but really, it's something we ALL need to do. Not just for babies or nursing moms, but for our own longvety and health.

Hugs, girlie!!

9:59 PM  

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