Feeding the ducks..............

Monday was a lovely day so we decided to take the kids to a plaza that has lakes and waterfalls with ducks, geese and swans. We decided to buy some "duck food" for Hayls to feed the ducks. I didn't think about it. I bought it and gave it to my husband to help her and before I knew it she was throwing CORN and who knows what at the ducks. I wanted to slap myself, why didn't I think of this before we let her feed the ducks. It was too late to take it away from her. How do you explain to a one and half year old that she has to stop feeding the ducks when the box clearly still has duck food in it. So we let her finish feeding the ducks quickly and then cleaned her clothes and washed her hands and tried not to worry.

Simple toddler pleasures such as feeding ducks and many other activities we have to think twice or three times before and after the activities.

She has been OK since but we need to be more careful and stay on top of things. This is just one more way these food allergies affect our daily life.

Goals for the New Year

With a newborn and toddler in the house one day just seems to fade into another right now. When night comes I am happy to have made it through the day with everyone fed and clean. Household chores, errands and other things fall to the wayside. I like things organized and put together but since having a child with PI and well, now two, I have learnt to pick my battles.

Any free time I have right now is spent trying to figure out our next move for Hayls and Heath who are both at different places on their PI journey. This year our goal for Hayls is to find one more food she can eat. If we come across more, yay for us, but our goal is just one. Our goal for Heath right now is to get him on a PPI medication that is corn free. We tried to wean him off totally but the poor little guy was in pain and stopped eating and sleeping. He started screaming a lot which was unlike him. However his rash started clearing and his poops went down to twice a day with just a little mucus. Once we put the dose back up he stopped screaming and went back to eat and sleeping ok. The rash is back and he scratches and digs at it. The uncomfortable constant spitting up is there and the nasal congestion. Hence a lot of my free time is spent figuring out how to compound a med for him and a lot of back and forth with different Dr's.

We are still in the process of trying to find an allergist who is knowledgeable about the whole EGID, PI, FPIES spectrum of disorders and our Ped. is very good at supporting us and trying to help us figure things out, but she too has limited knowledge of these disorders and is learning with us as we go. In essence we are still the ones steering the ship and searching for a Dr. who would take over.

Hayls did patch testing back in mid December and had 15 out of 16 positives. It is weird to say but I was relieved to finally have a test show something positive. We finally had an answer to something but no answers at the same time. The allergist who did the testing wasn't very helpful because once again he didn't seem to know much about PI just how to administer the test.

Finally we had a great Christmas in Florida with my family, Kenny's family and friends. I was good to catch up with everyone and the kids loved having everyone around. Especially Heath who just loves to chat.

We look forward to the year ahead to gain some answers but more so to see the kids grow and their little personalities blossom in spite of our challenges.

Thank you to everyone who offered us encouragement and support last year, hopefully this year proves to be fruitful on our PI journey.

We had our first ever FPIES meet up yesterday, Sunday December 12th 2010! It was great to meet the other moms and little ones face to face finally. The excitement, support and empathy flowed naturally. I think we each left Nichole's house feeling a little less stressed because we learnt the fears and daily burdens were shared. I was ironic how similar our coping skills are, I guess this is what helped bring us together. We are all seeking knowledge, support and help for our children. I have to process the whole experience as it is still hard for me to put in words. Just look at these cute little faces.

Did you wash your hands and mouth?

Did you wash your hands and mouth? This question is not aimed at my kids but instead at myself, and any other person going to touch my children. Every time I eat I make sure to wash my hands, mouth and any other part of me that came in contact with food. Sometimes I want to blurt it out before that prying hand touches my baby's soft skin. The soft skin that so easily brakes out in a rough rash, or blisters, or pimples that take days or weeks to clear due to the evil enemy we have come to know as food.

A simple thing like kissing my kids has been tainted. I must always think or wash before I kiss: "What did I eat? Did I wash my mouth?" Something as simple as this reminds me every day of our journey with protein intolerance. However that said I will stop, think and wash a thousand times a day because I just can't stop kissing those little cheeks!

Instinct

Recently I have heard a lot of moms of kids with FPIES, MPI and EGIDs talk about instinct. The burning in your gut that something is wrong with your child. Some Drs won't listen, some do listen and admit they don't know what is wrong with your child and then their are the few who listen and research and even better look at your research and together you find answers. We are lucky to have a pedi who listens and learns along with us but we still fumble along the way and our journey to find a team of Drs to work with is trying.

Seventeen months into this journey if one thing I have learnt like the other moms is to trust my instinct. I no longer need to hear a friend or someone else tell me, "yes that is a good choice to make". I do not say this to be arrogant but instead I say it because my instinct has worked best for my children's needs thus far. It has always been right and has gotten us to the point we are at today, i.e. two kids doing well on their current treatments. My family and friends have "normal" children and what works for their kids may not be the best thing for my kids.

Right now my instinct tells me that Heath is more sensitive to foods than Hayleigh is. It tells me that his medication is what is causing him to poop eight times a day all runny and mucusy. It tells me this is why his rash won't clear. It tells me that we should pull him off the medication so as not to sensitize him to foods to early as we did unknowingly with Hayls. It tells me that we have a lot of psychological work ahead of us with two kids unable to eat at parties, holidays and regular everyday school. It tells me that along with my husband we will provide the best environment for our kids and everything will be OK. It tells me that others may view the inability to eat as a handicap but we try to view it as a small bump in the road ahead, we try to place emphasis on what the kids can do not what they cannot do.

Busy as a bee

I have been beyond busy with a newborn and toddler at home and all the holiday festivities. We have finally gotten appointments to do patch testing (this is where foods are left on the skin for 48-72 hrs depending on with the Dr likes to do). We go in to start it on December 13th but the appointments are 2 hrs away so it will be a long week with us having to head to Sacramento for 3 different appointments.

After 4 weeks of cranberries we still were not sure if Hayls was reacting to them or not as her rash wouldn't go away. We decided to go ahead anyway and try blueberries. Well that pushed the rash over the edge and with 12 hrs pustules had formed and other GI reactions followed. So I am not sure if it was the blueberries alone or the cranberries with a mild reaction made it worse. So we are back to just Elecare and jarred carrots to get to baseline with Hayls.

Heath has been off of breast milk for almost 3 weeks now but his rash is coming back. The only other thing he is taking is Zegerid for his reflux so I am assuming that is causing the problems. However it is tricky to decide do we take him off or leave him on it.

Hopefully I wil have more time to blog in the coming weeks.

GI appointment

We saw a GI on November 4th. The appointment did not give us any definite answers but he did agree with my plan of how we proceed from here. It felt good to have support again. So we are still just suspecting some sort of EGID or MPI but essentially they are all interrelated and treatment will not be different even if we confirmed EGID as we do not want to use steroids as a long term treatment unless her life depends on it. He seems to think if she outgrows it, it will take years and she may be on a very limited diet. However she may never outgrow it and need to stay on an elemental diet.

He agrees that we should seek out an allergist who deals with these issues (we are looking to Stanford where there is one) and he recommends we seek out a dermatologist with experience in allergies. He is supportive of experimental treatments once benefits seem to outweigh risks. I am not to keen on experimental treatments but if it comes to that who knows what we will do, I guess it depends on a lot of things.

He gave us some medication to try that may stop a reaction if she takes it, but we aren't going to use it until we have at least 2 or 3 safe foods she can eat.

Overall it was great to have someone understand all the terminology I have become part of my daily life and be able to discuss all the medical issues and new research. My poor husband hears all this stuff from me on a daily basis but I don't think it understands it the way someone in the field would :-)

He was open to a lot of things and admitted this area is basically new and unchartered territory.

So for now we are happy with the GI and will add him to our team of Drs for the kids.