Hope, Allergies, and Autism

For the first 9 months of Hope’s life, she suffered with severe eczema on her face, scalp, ears, and limbs. It was so bad that it often became infected and inflamed and would ooze pus. Gross. She also always seemed congested and had trouble breathing at night.

We tried months of antibiotics and skin creams (including the steroid creams). We used special shampoos and special laundry detergent. Nothing worked, and she only got worse. It got to the point where the only soft spot on her face was the tip of her nose. That was the only spot on my sweet baby’s face that I could kiss.

Hope did not sleep very well at night because of her congestion and her insanely itchy face. “Eczema” is a Greek word that means “to boil over”, and that’s an accurate description.  Hope would scratch her blistered skin, and it would instantly bleed. Several times during the night I would have to switch the sheets because of all the pus that oozed from her infected face.

I took her to three different doctors and, believe it or not, not a single one ever mentioned allergies. They just prescribed more antibiotics and skin creams and told me that maybe she would grow out of it in a couple years.

Finally, one day in desperation I took her to the local emergency room because she had a deep infection on the side of her face. The ER doctor referred us to a dermatologist at Children’s Hospital in Boston. Ah!, I thought. A place we know well. I was grateful and relieved.

We went to Children’s, armed with all of the research I had done online. I was convinced that Hope’s problems were allergy related. I had eliminated milk and eggs from my diet (I was nursing), but Hope was no better. Thankfully, the new doctor was willing to do allergy testing on her. He also prescribed another round of antibiotics (which I detested giving her), and yet another 3 skin creams to be applied many times a day.

When the results of Hope’s tests came back, I cried. She was severely allergic to nuts, egg, wheat, dairy, soy, and citrus foods. I felt like I had been poisoning her with my breastmilk. I was relieved to have an answer, but also worried and overwhelmed. What in the world am I going to feed this child? I instantly began weaning her, and we started on an expensive hypoallergenic formula.

There’s been debate surrounding the link between food allergies and autism. In my own family, there is no such debate. Hope’s allergies gave me the impetus to view some of her sister’s challenges as allergy-related… from the shiners under Rhema’s eyes to her chronic diarrhea.

But how I dreaded putting Rhema on a gluten-free, casein-free diet! At the time, the child LIVED on Taco Bell chicken quesadillas and pretzels. And fellow autism moms know when I say that’s all she ate, that’s all she ate.

However, within a week of putting Rhema on the diet, she began sleeping better at night and her diarrhea CEASED. Brandon and I were shocked out of our minds. After 2 years of chronic diarrhea and gastroenterology appointments, Rhema’s diarrhea stopped within days of removing gluten and casein. She also went from having colds and ear infections almost every month to going a whole year without either. And even though she is still on the restricted diet, she eats better today than she ever did before.

Certainly not every child with autism is affected by food allergies and gut issues. And the GFCF diet is not beneficial to all. But in our family it made all the difference in the world. (For more on allergies and autism, click here and here.)

Back to Hope. It took months for her skin to heal. But as soon as I started weaning, we could see improvements. The pictures in this post are actually after Hope started healing. She was far worse than these pictures show, but at the time I could not bear photographing her. Now, she is almost two years old and is still very allergic to most foods. In fact, more foods have been added to her list of allergies, but I am confident that she will outgrow some of these (and some she will probably never outgrow like the nuts). We’ve had a number of scares, and sometimes just walking into a public place or a friend’s home will trigger a visible allergic response in Hope. We never leave home without an EpiPen.

When I think back to that time when Hope was so sick from allergies, I know that God carried me. I was running on fumes – no sleep – consumed with both Rhema and Hope’s medical problems.

During that time, I could not imagine Hope’s skin ever healing. I had assumed that she would have permanent scars from the deep infections. (And the doctor warned that we might see scarring from all of his prescribed steroid applications).  When I look at her now, it is a reminder to me that God can (and does) heal and can make anything new again.

Advertisements

35 thoughts on “Hope, Allergies, and Autism

  1. Beautiful story of healing and hope, both with a small and a capital H! And of Mama-bear figuring it out before the doctors did…

    Restricted-diet issues is one of the many things on my list to post about. I’m quite sure Joy’s on the “not every child has this” side of things, but as you say, for those who are affected with allergies, the right diet can make all the difference in the world.

    Blessings!

  2. A beautiful story!

    We’re trying to do gluten, casein, lactose AND soy free. Unfortunately, Kayla loves dairy products, especially “cheese”. She was eating SmartBeat “cheese” but it has casein in it. I can’t seem to find a cheese alternative that is casein, lactose and soy free. Have you found anything or do you just do without it?

  3. she is a pristine and beautiful reminder that we can emerge from all of this .. no matter how all encompassing and futile it feels at times, there is a way.

    and you are a great reminder that we, the moms, need to follow our gut and press on when we suspect that the stone unturned is the one with the answer.

    you knew. you didn’t give up. you still won’t.

    none of us will.

    peace

  4. Ecki,

    We did try a casein-free, soy-free cheese by Galaxy Foods. It’s their Rice Vegan brand, and they are cheese slices (and you can get American “flavor”, cheddar or pepper jack). I could not find any local store that carried it, so I ordered it online. http://www.galaxyfoods.com/ourbrands/usa/galaxy.asp

    My kids did not love it (but they’re incredibly picky) – doesn’t melt the same as regular cheese – so we just gave up on cheese. As I’m sure you have found, most rice cheeses unfortunately have lactose in them so be careful. I have heard of an almond cheese that is CF and SF, but it doesn’t sound too tasty.

    I wish you well, I know how tough it can be to finds foods for our kids.

  5. Wow. What a story. What a testimony of healing! What a shame that you had to figure it out before the doctors did. And what a glorious Lord to give you the wisdom and discernment to ask the right questions and do the proper research.

    What a beautiful Hope! 🙂

  6. Lady, what your family has been through. Hope is a beautiful baby, and you are a beautiful mommy. I am so thankful the girls (and thereby you!) have found some relief with the GF/CF/Beware-of-it-ALL diet. What does the DAN doc say about the eczema? Or the allergy issues for that matter?

  7. Hi,
    ouchy! Wow, that’s a lot of allergies.

    My typically developing child is anaphalactic allergic to milk and egg. I had that same feeling of guilt about nursing – and was similarly brushed off by my pedi. We only had mild eczema – mostly he just vomited and face swelled when he would ingest the allergen.

    I do cheeseless pizza – with bbq sauce and chicken, for example. I know that’s lame but he doesn’t seem to care.

  8. Your children are so beautiful! My son was diagnosed with severe allergies to soy,peanuts,eggs,wheat and dairy after spending the first year of his life covered in eczema and being really sick. I started a website http://www.spewdfree.com and I thought you might be interested because all of the recipes on the site are free of soy,peanuts,eggs,wheat and dairy.
    Thanks,
    Heather

  9. Wow, this is incredible. I see such beauty in your lives from the journey the Lord has seen you through. What a wellspring of hope and sustaining grace you pull from! Thanks for being a blessing.

  10. Wow! What a story! So happy that you could stay positive through it all (I’m sure that was hard!). Blessings to you and your girls. 🙂

  11. Praise God! She is gorgeous! I love that she loved being with Nylis. Maybe we’ll set them up. lol.
    It’s amazing how God truly used “hope” to help end Rhema’s tummy problems and to help her eat more. He truly does work in mysterious ways

  12. Pingback: More on Hope « Autism In a Word

  13. Wow…you have 2 beautiful little girls. Be sure to remind them of that everyday ok. I have been in their position with the allergies and the eczema breakouts and the late nights…everything. Its horrible, i know! If they still have eczema i suggest DermaSmoothie/FS. IT HAS DONE MIRACLES FOR MY SKIN! It prevents breakouts from food you cant eat usually, unless they are highly allergic to the food…like nuts or dairy. My mom knows what you’ve been through, some doctors thought i was being beaten and abused because of my breakouts and skin problems. She kept asking questions and going to many different doctors, until she found one that could actually help! I hope the best for you and your daughters!

  14. Pingback: MADE (Part 2) « Autism In a Word

  15. It was a good story. And you have a beautiful daughter. It’s really good that her skin cleared up. You are very blessed with two adorable and beautiful kids. Take care and God Bless!

  16. Hi ,
    Love the story.. You are very lucky her eczema cleared up!!
    My son right now , looks the same as the pictures of your daughter , and he has rashes all over his body.. Didnt understand the part about autism? Does that mean he is autism or its only food allergies..I’m french so I didnt quite get that…. I have an other appointment tomorrow , for probably creams and creams … I’ll ask for an allergy test..My daughter is also allergic to peanuts and she had allergies to eggs (she grew out of it) … So probably my son has allergies too !!

  17. a good lesson for doctors . BTW your daughters are so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,………………………………………………………….CUTE.U r blessed with them. there is one saying in hindi– Bhagvan ke ghar me me deir hai lekin andeir nahii…. which means that Almighty Lord will make miracles happen no matter how long it takes…… i wish all d best to your family…… and take care kids:) wishing u guys a lovely life ahead..

    riya paul.

  18. a good lesson for doctors. there is one saying in hindi — Bhagvan ke ghar me deir hai lekin andeir nahii…….. which means that Almighty Lord will make miracles happen no matter how long it takes… btw your daughters are so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,so,…………………….CUTE.. you r blessed with them…. i wish your family all d best…..

    riya paul…

  19. I don’t even know where to start! I have yet to see a baby that looked like mine! Colin is 14 months old now, we ve had a “good” summer….but I lay in bed right now, ‘surfing’ cuz I have to be next to him when be starts to itch. Wondering if this winter is going to be like last year….crying while I pray that he doesn’t regress back to before (just like your pics of Hope)….feeling guilty that Im frustrated that he’s so uncomfortable, yet im so miserable, guilty that I’m so selfish… When there are so many parents out there going thru the same or way worse than this, those with special needs kids, those with life threatening diseases….even for my niece who has Cystic Fibrosis……I’ve just never seen anything like this….I’ve told the doctors we’ve seen that…the meds are great, however, honestly, along with the meds, I would have loved a phone number, email or some sort of contact person who has been thru what I was going thru. I literally thought I was losing my mind! I have two other children, and I could not imagine having another one that was having major health issues at the same time! U r amazing! I feel like my girls don’t get enuf attention from me becuz Colin is always so high maintenance:(
    Anyway, I know ur busy, just curios if u r able to contact me when u have a little xtra time? Normally, I wouldnt ask that, but I really have never run into anyone else that has been in this situation. I’m sure u know how many others, with very good intentions of course, knows someone that has eczema and something to fix it:/
    Thank u for ur time and those beautiful pics. Would greatly benefit hearing for you! Tammy

  20. Thanks for your posts about eczema. Our 13 week old is showing signs of it. We have an appointment with a pediatric dermatologist soon. However, in my research, i discovered that a eczema treatment website is using a photo of your daughter on it. Not sure if you were aware, but here is the site : http://eczemafreeforeverbonus.com/

    Thanks agian,
    Randy

    • Randy, thank you so much for letting me know about my daughter’s photo being used on that site. (http://eczemafreeforeverbonus.com/) I was not aware of it and was never contacted for permission for the use of her picture. Nor has my daughter ever used or benefitted from the “cures” promoted on the site. Unfortunately, this prompts me to copyright my blog.

      Thank you again.

  21. I started crying when I read this. My 6 month old baby girl Joy jas been suffering from SEVERE eczema since December and when I read this, it felt like it was about my baby. We have been dealing with steroid creams, oral steroids, as well as cream and oral antibiotics for the infections from the scratching. We’ve been through allergy testing and she tested for egg whites, milk, and peanuts. Our ped would like me to keep nursing her, but as you stated, I feel as if I am poisoning her 😦 Can you tell me more about this hypoallergenic formula? Also, like Tammy Gordon stated above, I have NEVER met anyone going through this, I need to compare notes, too much to type!

    • Destiny, Jeneil did reply to me…I actually never thanked her:( However, for an update on Colin that may help your sweet Joy…we took him to a homeopathic doctor recently. Backing up…he is allergic to dairy and eggs that I know of…there’s probably more that we are not aware of? Soo many things have dairy in them…I wish I would have kept nursing Colin and just watched what I ate. In any case, what I really wanted to tell you was what we have learned recently. I kept asking the docs if there was something with his digestive system that could be causing such severe eczema. I had him tested for celiac, I know he didn’t have cystic fibrosis (my niece does and I don’t carry the gene)….the homeopathic doctors said that he doesn’t process the fatty acids properly. Basically, he hasn’t been getting any of the omega 3 and 6’s his skin so desperately needs. So, now we have him on digestive enzymes with a probiotic and fish oil. He had a flare this past week..only because he was fighting a virus of diarrhea. He had just begun the new “meds” and his flare wasn’t nearly what they normally are..plus, I haven’t put a steroid on him in almost 3 weeks now or given him a bleach bath! He still takes an antihistamine every once in a while, but we can definitely tell the difference!
      You ladies are unbelievable !!! Our Lord never ceases to amaze me with mother’s who would do anything for their precious babes! Thanks for blogging and those that reply as well! It is all so encouraging!

  22. Wow, our 7 months old son is going through the same thing. Our previous children never had an issue. My wife and I have been doing as much as we can. Son tested positive in peanut & soy. Being an Asian, it was very hard to take SOY SAUCE from our diet, but it had to be done. Anything with SOY including Soy Lechten, we try to avoid. We avoid all dairy products. We tried Almond milk, but he broke out as well.
    One of the thing that we noticed was ANYTHING with high histamine, such as tomatos, spinich, egg plants would also trigger a break out. So we avoid the high histamine food too.
    It’s crazy how much our diet has shifted. My wife is still breast feeding. It would be great if you could call her for some encouragement. This is our 6th child, and we never had this issue before. Thank you so much.

  23. I just found your blog, while searching for cures for eczema caused by food allergies. I’d love to hear how your Hope is doing, did she grow out of it? What did you use to treat her? Hope is so much older then my child, and I would love to hear from you and see if there is hope :-/ it just feels like I have nothing to feed my child sometimes. Please respond – give us an update, anything? something?! thank you!

  24. This story is so similar to ours. Did you end up weaning Hope onto the hydrolyzed formula? I too am breastfeeding my 4 month old daughter and she has severe facial eczema. I’m considering weaning her to formula. With the infections, did it clear up with antibiotics? I’ve chosen not to continue with cortisone cream and she continues to flare up every day. Her whole face is now covered. Can you offer some advice please? Thank you!

  25. Can you tell me what formula you put her on? Was it neocate? Thinking of trying that or goats milk formula. I have been on the elimination diet for almost a month and have strictly breastfed up to this point.. last night was one of our worst nights thus far. 😦

    • I am going through the exact same thing… My 4 month old son has rashes/eczema/cradlecap/oozing yellow liquid and he’s on every cream! I really believe that he needs to heal from inside out

      I started Neocate today. Have you tried it?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s