Should I go on?

[Anonymous]

Hi all,

I’m writing to you a bit discouraged. I’ve been on the TED for almost five months now, with no new food being tolerated by my son. My oldest daughter has MFPI, so thankfully I knew a bit what to do this time around to be able to continue breastfeeding. Thankfully, Jonah is a healthy and happy baby boy as long as I stick strictly to the TED (without any kind of potato, as he has reacted to them multiple times). My discouragement comes because I am so thin. I try to eat constantly and have even come up with fun new TED recipes like lamb meatballs with brown gravy! But I am so tired of the comments and the lack of support. Has anyone breastfed for a year on the TED? If I even have a tablespoon of “low allergenic” foods like carrots or apples, my son is miserable for days. I feel like I’m doing what’s best for him, even though it may not be best for me right now. I just don’t know what to do. I finally found a hypoallergenic vitamin that doesn’t bother him too terribly. I would just love to hear from someone, anyone who has been in my place. Do the benefits of breastfeeding outweigh the loss of nutrition? Sure am thankful for you all!

[Anonymous]

C-Mommy, It has been a long time since I have posted here. My MFPI son is now almost 5 yrs old and has been free of any protein intolerance problems for about 2.5 years. But, as I read your post, I felt all of those emotions coming back vividly.

Congratulations on your “healthy and happy baby boy”. It is so wonderful that you have been able to get him to this point through your diet changes. It is very hard being so hungry and being so thin. I got tired of people “warning” me about my weight loss and of other people being jealous of it. I really got irritated at the jealous ones – I’d think “You try being in my shoes and then you can tell me how wonderful it is that I am losing this weight!”

My son was 7.5 mths when we finally learned that his misery and health problems was due to his MFPI and that I could control this through my diet. I nursed on strict TED for six months (he was 14 mths) and then on very restricted diet for another 12 months (when he essentially weaned himself at 26 mths). I was on strict TED for so long, not because of continuing reactions, but because I couldn’t afford to have him be miserable. My dad died from his 1st and only heart attack about one month into my TED. I couldn’t afford to eat anything that would make my son sleepless, crying, vomiting, etc. since I was barely holding myself together as it was. So I stayed on a very strict TED (except I added Diet Coke back as soon as possible) until I had a IgA test done on my son’s stool and an IgG blood test. Since he had been exclusively nursing for 7.5 months before I learned of his MFPI, he had been exposed to many foods through my unrestricted diet. The test results gave me the confidence to try adding a few new foods which he didn’t react to in the test results. These tests might not work for you if your son has been nursing on your restricted diet from an early point. He wouldn’t have had the opportunity to build these antibodies to offending foods in his system.

I remember some moms on the various forums who would pump to build up a stash of frozen milk and then go off from TED for a day or two. They would give their baby the frozen milk for those “vacation” days and the following days until they felt that the offending foods were out of their milk. Could you try something like that as a way to keep going?

Another thing that might help you out soon is his ability to try foods as solids himself. I hated the thought of purposely feeding my son a teeny bit of food that might hurt him, but I liked the idea that any reaction would be over and done with sooner. If he ate the food himself, it wasn’t like me eating it and having it stick around in my milk for several days. One point – since I was eating rice in my diet, I tried him on rice directly. It turned out that he could handle rice (and corn) through my diet, but he definitely reacted to it when he ate it himself. So, if he fails food trials through your milk, he probably cannot handle them at all as solids. But failing a food as solids doesn’t completely mean he couldn’t handle a limited quantity of that through your milk. Confused yet? Hope not.

I also trialed foods that would give ME the most bang for my buck! I wanted a “take with me” snack food so I tried grapes/raisins fairly early on. The first additional protein I tried was egg (even though it is not low allergenic). After that proved OK, I ate like 3 eggs every morning and took hardboiled eggs with me for snacks. My sister started worrying about my cholesterol instead of just my weight loss at that point. 🙂

You asked “Do the benefits of breastfeeding outweigh the loss of nutrition?” I think that is up to you. But before you can even consider this, have you found a formula that he will tolerate?? There is no point in considering this option if you don’t yet know if he can tolerate Elecare, Neocate, or others. My son ended up OK with Neocate, so I supplimented and also used Neocate solely for a day or two while pump/dump if he started reacting to my milk due to a failed food challenge.

My son is 4-3/4 yrs old and you’d never know now that he had ever been such a sickly and miserable baby. If I didn’t have pictures and videos, I might not even believe it myself. I find it interesting that some of his absolute most favorite foods now are the ones that he was most intolerant of before. Hang in there with both of your MFPI little ones. You are a wonderful mother (“Super Mom”). I hope you feel my hug all the way from me to you today.

[Anonymous]

Dianne,

Thank you so much for your words. They were both helpful and encouraging! I haven’t tried pumping yet because my supply has been so up and down. But I really want to give your advice a try. It’s so good to hear you’ve been there.

I spoke with my husband tonight. He is concerned about my health and also about my emotional adjustment over the next few months. We will be transitioning back to the States in just 6 weeks, and he is concerned that having such a strict diet will put more stress on me than already exists. While I know this is true, it breaks my heart to think about weaning Jonah. He wants me to start eating normal food, and if Jonah has a reaction, to start him on Neocate. This just hurts me to even think about. After trying for so long. Praying for a miracle!

I wish there was more proof of MFPI out there so someone would believe it’s a real problem and I’m not being oversensitive. If I could find a doctor who would back me up, it would be such a blessing. Maybe more people would believe I’m not crazy!

Sorry for the rambling. Just so torn right now. Thanks again, Dianne, for taking the time to write out what helped you. I really appreciate it!C-Mommy2010-10-19 07:51:15

[hellbennt]

aw, mama! hugs!

there are so many posts by ‘past’ mamas to encourage you on this journey! I understand what your husband is saying, but you have to do what YOU want to do/feel is right…

I think I’d keep trying foods? like have you tried avocado?

I supppose you could re-visit foods and se what happens…

sometimes something a baby reacts to at one age, s/he is fine w/ a bit later on…

or, like for example, apples- maybe applesauce IN something that you can eat already? like your lamb meatballs- maybe you can try greenbeans in them? like a tablespoon in the whole batch, then the next batch 2 tablespoons, etc…

just thinking as I type…

as far as PROOF there IS. I don’t have the links handy, but go to the upper right hand corner of this page and click ‘search’. choose 6 months and OLDER to find older info…

look for IGg and IgE reactions

things like that

do a search for username erintx

you can do it, mama! hugs!

[Anonymous]

Well, I sat down with my husband last night, and we decided that it is best for me to continue with the diet. I need Jonah to sleep well and to be happy during the day so I can get things done and spend time with my daughter. He even offered to write to our families and let them know what to expect regarding my food restrictions and the reason behind my dramatic weight loss. I know it won’t be easy (as we’ll be traveling between families for over a month), but I feel this is best. It’s good to have my husband’s support!

I have tried avocado and apples, but he hasn’t been able to take them. I started trying carrots and broccoli, and so far, so good!! I also started him on solids, but the jury is still out on pears.

My challenge over the next few months will be to get my weight up. I know I’m not healthy, as I get tired very easily and have bruises all over the place. I have to sit down most of the day. I don’t want to miss out on having fun with my oldest! I’m hoping to meet with a dietitian soon who might be able to help.

You ladies have been such a great support, thank you!

[hellbennt]

lots of good fats for you! flax seed oil, etc, a vitamin w/o any added soy or milk. can you drink hemp milk? oat milk? almond milk? add flax seed oil to this and some fruit and have a smoothie…

can you eat any nuts?

[Anonymous]

Sorry I was MIA about your reply. We were on vacation and had very, very limited computer access. (I felt like my hands were tied — being online is such a normal thing to me!)

You have probably already either already weaning or perhaps you are still nursing – so much time has already passed since your post. But, I did want to mention the suggestion of testing him out on Neocate or Elecare first before relaxing your diet. Many sensitive MFPI kiddos have problems tolerating even these formulas due to the corn in them. So, before you lose your “clean” milk, it might be worth it to trial the formulas first.

I can understand your husband’s concern about your physical and emotional health given your impending international move. On the other hand, if weaning would cause you more distress than you would have by staying on the restricted diet, then that is something to consider also.

Whatever you decide – remember, you are a great mom who is (and has been) doing whatever is best for your whole family. Your little one will likely grow out of this soon (in the grand scheme of things) and one day it will all be a distant memory. You will look back and say “wow, I lived on that diet for so long and survived and raised a happy child…if I did that, I can do ANYTHING.” So, hang in there SuperMom. You are doing great!

[Anonymous]

Duh…I was looking at your first message about your husband wanting you to stop nursing. Now, I realize that you had a second message about continuing nursing so that Jonah will sleep (I can certainly empathize with that!).

I agree with hellbent’s idea of adding healthy fats to anything and everything you can. And adding high-fat nuts, avocados, etc. may also help. What about extra vitamins for you – will he tolerate it if you take vitamins? My mom says she really feels an energy difference when she takes lots of Vitamin C. I am sure that others have other recommendations of supplements that you could take (if Jonah can tolerate them).

I did find that educating my family members helped them understand why the food restrictions were so important. We went to a resort for a family reunion when my son was 16 mths and perfectly “normal” to all observers. So it was hard for my inlaws and extended inlaw family to envision how quickly my son could deteriorate if he (or I) ate the offending foods. I am fairly sure that most of them thought I was just being weird and obsessive (and likely still do…sigh) but they did honor our requests about not sneaking him extra food and to not consume the special foods that I had in the fridge for my meals. By that time, I had found a margarine that I could use and I was very worried about them getting toast crumbs into it. All in all, it turned out OK.

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