Soy good!

Major Major good news alert!!!!! Avy can now have Soy!!!!!!!!!!!!!!!!!

We are beyond thrilled about it. All of a sudden it has opened up a whole new world for us. Being a Vegan is so much easier than being a person who cannot have both soy and milk.

We tried a little bit last Friday, similar to a food challenge. We had the Benadryl, Epi-pen all ready in case. Over the period of 2 hours he drank a quarter cup milk. We watched with bated breath, no early onset of rashes, which was a great news by itself, and then nothing more also. He slept well, he ate well, he pooped well. So all was good.

Everyday he had a little form of soy, soy milk muffins, soy milks and best of all SOY NUGGETS!!!! I am happy to report as parents we were so happy to see him down the fried soy nuggest!! Tears filled my eye and I could barely see. A big moment.

So tomorrow we are going out for Vegan Pancakes!!! Pancakes are something Avy’s always wants to eat when we go out, but we were never able to get him. Tomorrow we can….

This is Avy at 9 months when we first got him diagnosed, the remnant of a tiny red patch on his left cheek is visible..hmmm….we have come a long way!!!!!

Advertisements

Milestones- Part 2

ALLERGIES…you knew it right?

A quick recap, we have been avoiding a lot of foods, as his blood work (RAST), done when he was 9 months old, revealed high Ige numbers, as they call it.  So we have been avoiding milk, egg, soy, oats, lima beans, chick pea and all forms of nuts. We test once a year and see if there is any improvement and base our decisions on that. Last year, in July 2010 the blood work has not shown decrease in levels, so we had to keep going with the elimination diet.  2010 to 2011 has been a hard year. He started to talk, notice others eating things he cannot, started to understand he is different and asked many questions.

I had happy days when he understood everything, was happy to get his own ice cream, but also had horrible days when he told his Paati, “I don’t want to be special, I just want to eat cow’s milk”. The maturity beyond his age sometimes saddened me.

Come July 2011, just when we as a family wanted some good tidings, it came. There came a wave of good news. His levels ARE coming down, especially milk. I had the results last week, but quite did not know what to do with them. We met the doctor yesterday and she confirmed what we suspected. He is starting to slowly outgrow his allergies.

I am documenting a quick comparison of his Ige levels between July 2010 and July 2011. I am doing this because when I did my research online, I found no information on specific ige levels from a RAST test (see overall chart) and what it might means with respect to outgrowing the allergy. It is not an absolute science, I do not give medical opinion, but it is some comforting information. I am doing only the common allergens.

Before I delve into details, which non-interested people, can skip, I have to talk about my doctor. She is a GEM. I knew from the moment I met her that I do not want to ever change his doctor. She is not a part of the network doctor on the insurance we have for Avy, but still I fight to keep going to her even if it means we have to pay out of pocket. My faith was reassured this time too. She spent a good 45 minutes with us, letting us do all the talking about what we done, his responses, what we would feel comfortable with. We could tell she truly listened, and did not get the rushed feeling we get with most doctors. She talked, we discussed options, plans (detailed below) and we kept talking till we got on the same page. She let us have the flexibility we needed in his treatment, she listened when we presented new research and did not feel blindsided. In short we love her, and even Avy who was shy, came home and said “I like her!!”

I have just recapped by allergen what his levels were, and what the change of treatment is going to be.

Milk: His level went down from a 20.94 to a 7.00. It was so heartening to see. All those meals, all those times, both he and we have felt it as a challenge, it has paid off.  I had done some research before we went, like I always do, sometimes I think I am obsessed about it, anyways. I found an article (here ) published just the first week of this July that shows extremely good results in kids with milk allergy when they have been challenged with baked goods containing milk in them. A very interesting read and I immediately knew I wanted Avy to try it.

I took it to the doctor. She said she had just glanced at it on one of her medical journals and had not read into it and then she sweetly asked if she could take my copy. I had bookmarked the article already and had multiple copies and so happily gave her one.  I liked that she was open to it, and I can understand it. I am in a profession that changes every day and I cannot keep track every small change, every new study every day. But her openness is accepting my research and her conviction to try it for him, if he is in the right age; made me very happy. She said she would get more details and call us if Avy would qualify. We are keeping our fingers crossed, and I know even if not in the next two months, I know we can in the next 6 months to a year. That is big for us!!!

Egg: The level had come down not much, went from about a 20.80 to 16.83. Since it is still high and it is not a priority for us, we have decided to hold off on that and wait for another year to see what his levels do.

Soy: This one increased, it went from a 1.68 to a 2.45.She felt it was low enough for his age, so we could try giving him some food at home. So this is the first order of business for us, and hopefully it goes well, if not back to the wait!!

Oats:  This one decreased from 1.32 to 0.56. So we are going to get this back on his diet. I do believe it flares up his eczema bad, but have to wait and watch.

Nuts: Though his levels are still low compared to normal standards we did not want to dabble in trying them just yet, as Ajit often has mild reactions to nuts, so we have decided to hold off.

Lima Bean and Chick pea: There are no established standards for these and hence left to us to determine what it does. So soon we can try these too.

So there, his list has become a lot shorter now!!!!!!!!!!

So waiting and slowly introducing the foods into his diet in the next 2 years is the goal and I am elated with the possibilities. The thought that the strict avoidance has some pay off is a comforting thought. Having said that, some kids do not truly outgrow even with avoidance, and I think that is okay too. We just learnt to live the lifestyle and if we are true cheerleaders the kids can grow up strong and in control of their lives!

I do want to summarize something about doctor visits and things in general when you have a kid diagnosed with food allergies, as that single appointment every year determines the course of your life for the next year. You NEED to be prepared. Just a bullet point on what worked for us and some suggestions.

Edited to include one more important bullet point in bold!

  • Watch your kids; document any small or large reaction to any accidental exposure. If you think you might forget keep a journal.
  • As your kid gets older and can talk, keep them involved. TELL them what is wrong with them. Hiding the truth can have dire repercussions. Tell them their progress, and believe me they understand more than you would think.
  • When you make or buy substitutes for them, tell them they are substitutes, and that what they are eating is different from others, yet yummy. The true protector for kids with allergies as they grow is themselves. You cannot be everywhere with them. They need to be able to tell when they don’t feel good.
  • Research as much as you can, take print outs of everything you find and that will help you, before you see the doctor.
  • Very important, call the doctors office, about 3 weeks before, even if it means calling everyday, and get a order for blood work BEFORE the appointment, that way you know the levels beforehand. It makes no sense to see the doctor and then get a blood work order. You would have to try and talk to them over the phone to find out what it means etc. Surprising that doctors office don’t tell you this.
  • Use that 30 to 40 minutes you get with the doctor in the most useful way possible.  Ask questions.
  • WRITE down ALL your questions, even the silly ones, even the ones when you read you know the answer to. It will all be worth it, when you walk out of your doctor’s office satisfied.
  • Find a doctor you love, you trust and your gut is almost always right. The doctor should be open to suggestions, should listen to your ideas, to your approaches.
  • You know your child better than the doctor, you see him/her every day, and they see them once a year. If you disagree with the doctor state it.
  • Find out why the doctor feels a particular course of treatment; ask if it has worked on other kids.
  • Be clear when you leave on what you can and can’t do.
  • Make sure you have updated prescriptions for all medicines and a current epi-pen. Also carry the epi-pen with you. I am bad at that too. Give one to the day care center or school.

In short, YOU be your kid’s advocate. YOU need to talk for them, about them as much as you can!!!!!

Good luck to others out there like me, your ray of hope is around the corner too!

The journey does not end here, however the load has surely become lighter!!!!

Milestones- Part 1

After all the not so happy posts, I am happy to do two happy posts!

Milestones, slowly but steadily, one after another have been crossed. In order of increasing importance here I present…

We are Potty trained completely… Yaayy!!!!!!Actually this milestone was achieved end of June and has been going good. No accident at home or daycare and dry diapers at nap and nighttime. So we are thinking of removing the diaper safety net and ending all sort of Potty related issues.

We are writing!! As you all can tell by my previous post! He writes ALL the time. He has issues with C, G & S. He does them the opposite way. He knows it is wrong and is working hard on correcting them. We barely interfere as we want him to learn it. Paati did notice him brining the letter G from our fridge magnets and trying to re-create it!!!!

This is him writing Amma, Appa and Lemon Grasss on bottle (thanks to his daddy)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We are drawing!! His drawing has improved so much. Thanks to Patti, now he writes a letter of the alphabet and draws a word from it. Like A for apple, B for Ball, so on….he can do them all. It is so enchanting to watch. Look below for R for rabbit, and apparently the rabbit is lying down!!

The R and the Rabbit from the R..

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The biggest one of them all in the following post…COMEBACK!

Time moves on…

Time flies. It is going to be 4 weeks since my surgery. I have my good days and back. This is the first full week am at work and I feel good. Energy is slowly creeping back up, minor hiccups now and then, but mostly good.

Been a while since I did a post on the little one. He is doing great. He has enjoyed immensely the unexpected visit of grandma, the plenty of pool visits and having mommy home more. Sometimes he acts with the most maturity when it comes to my health and sometimes he is just a baby, and I do prefer the baby.

He has been crossing his own milestones in all this while. He is WRITING. He can write most of the letters and has most trouble with G and S. He spends most of his time asking us to spell words and he would write. What a joy to watch!!! Of course he now can spell his own name, write Amma and Appa with no help and he is mighty proud of that.

We also had to take him for his blood work this past Saturday. I did this long post last year about our experience (here). This year was a lot different. All through the drive he was asking where we were goin and since I did not want to worry him, I was buying time saying we are going to a building etc. Then his dad told him that we were going to the hospital. He thought for a while and then asked “For who are we going?”. The intelligence of kids!!

I then explained it was for him, to check on his allergies. He was curious he was going to lie down on the white paper. He was playing around till we finished the registration and then we went back to the lab. He did okay when she but the rubber band on his little arm, and she poked him!!! He was shocked and started crying, yet he never moved his arm. They had to take 3 full vials of blood and it was painful to watch.

He got a Dora band aid, plenty of Spiderman stickers and a tight hug from us. He immediately stopped crying and wanted to know why she did that. Most of the weekend was spent on analyzing why she did it to him. A conversation in particular showed me a peak into his little world and little mind. I was explaining to him on how we have to get the results from his blood work and then see his doctor, and I mentioned..

Me: “Avy they took blood because they can see it and tell you about your allergies. We can then go to your doctor”

Avy: “No I do not want to go to the doctor”

Me: “Avy only if we go, can we ask her, if you can have milk and eggs”

Avy: “We will ask her , Can Avy have milk and eggs? And she will say YESSSSSS”

I had no words for a while and I just hugged him. I wish things were that simple, I wish they would say he can do it. For the past few weeks he has been saddened that he cannot just have what everyone is having. He knows he gets his own stuff, his own version of EVERYTHING, but it is not enough. I wish he did not have to do so much growing up at such a little age.

As I often say he is a big man in a little boy. Circumstances for him have always been that he has to face things above his age. Maybe that is why developmentally he is advanced for his age. My feelings are in a paradox now, I feel proud that he is writing and he is not even three years old, that he can grasp concepts so quickly, that he can talks for hours but I am also sad, he HAS to grasp concepts above his age, he has to protect himself from wrong foods that this little age and that he has to feel different.

We get our blood work results and see the doctors next week. Hoping for good news, the little one deserves a break.