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!!!!

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8 Comments

  1. Kalpana said,

    July 24, 2011 at 12:37 pm

    Extremely happy for all of you… a welcomed respite from the recent troubles and a much deserved kudos for the relentless effort…

    So much love, Kalps

  2. July 25, 2011 at 3:08 pm

    This is so much better to hear Avy’s allergies are coming down, and you are going great job documenting and researching your own. I loved your bullet points, I am sure I will use few of them immediately.

  3. telugumom said,

    July 27, 2011 at 8:57 pm

    Really happy to know that the allergies are coming down. I wish you good luck on trying new foods for Avy and hope he takes them well. Keep us posted.

  4. avymom said,

    July 29, 2011 at 10:44 am

    Will sure do! Thanks

  5. August 1, 2011 at 12:59 pm

    congrats on the mile stone! “YOU be your kid’s advocate. YOU need to talk for them, about them as much as you ca” – loved that! and kudos to you for being avy’s advocate. The doc sure is a gem.


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