Wednesday, January 4, 2017

Our Story with Milk Allergies

Its not often I write a post that I hope no one needs.  But if you do need it I hope it helps. Life can be hard and it is especially hard when there are unknowns.  We were in that situation with our 12 month old several years ago. (I feel like we run upon unknowns a lot more then I would like)  The doctor didn't have answers, there were many test, and a lot of research done on my part as well.  It was a very scary time but luckily turned out to be a very mild situation.  I thought of the blog post I shared at the time (it was on our family blog, that is now private) and even years later I would receive several views on that post, and an occasional comment letting me know their child had the same symptoms or had some questions.  I am going to share those posts below in case there is someone that needs it.  Its scary and overwhelming when there are so many unanswered questions.  Even knowing can be scary.  This was quite a few years ago and we are now on the other side of this situation.  If you have any questions please don't hesitate to ask.  

Post 1-*the doctor did not think of allergies until I showed her the 2nd picture below.  I am so happy I brought that picture with me.  It helped us move in the right direction.  
Well yesterday Olivia went in for her 12 checkup. Lets just say it didn't go very well. She looks healthy and is developing great EXCEPT in her height and weight. Now I know she is small, she has always been small, but even I was shocked by the numbers. Now it is not the percentiles that really worry despite the fact that she is off the charts now (on the low side) except her head did come in at around the 4 percentile. The cause for concern is 1st her head did not grow at all, 2ND she only grew a quarter of an inch (she is now at 26.5 inches), and she LOST a 1/2 a pound (now weighs 16 lb 14 oz.). I guess her not growing hardly at all and loosing weigh is enough cause for concern to have to get lots of tests done. Also every time she has milk (or pretty much any dairy product for that matter) she breaks out in a rash and probably has an allergy.

So here is the deal:

  1. She had to get to shots
  2. We went to the hospital where she had Lots of blood taken-she is being tested for 8 different things-Poor baby she cried so hard. Lucky Scott was able to meet us and he was so kind to hold her while they took the blood. I don't think I could of handled it.-We should get results hopefully tomorrow
  3. On Friday she will go in and get a sweat chloride (I think that is what it is called) test done-really not sure what is involved all I know is i need to get her really hydrated and bring a coat.
  4. She will get her weight checked again in 2 weeks
  5. We need to see an allergist ASAP and then a dietitian. I can't get in until May 27 but hopefully Livy's doctor will have better luck and be able to get her in earlier.
I am a little frustrated because we need to get her to the allergist asap so I can find out what I can give her to eat. I am suppose to calorie load her but have to avoid all dairy. I am a little stressed. I am sure she is fine-I keep telling myself this. Anyway Livy was a trooper and I think I was more traumatized then she was. I can't wait to get these tests over with and have them tell me she is perfect just a little small.

Post 2 Test Results

All of Livy's blood work looked good. She is a little anemic and just needs an iron supplement. I am so happy and grateful everything is normal. She still has the other tests mentioned in the previous post but these were the results I was most worried about. Her next test is Friday. We are tying to fatten her up a bit but it is a little difficult having to avoid all dairy. Any suggestions?

Post 3 Allergies

Olivia went in to the Allergist today and was tested for 21 different food allergies as well as cats and dogs. The results-She is allergic to milk, eggs, and dogs. The good news is she has the mildest case of food allergies. She will have to avoid all milk and eggs (small amounts of eggs like in a cookie are okay) for 12 months but maybe as early as 6 months depending on when the doctor wants her to get tested again. Due to these allergies the doctor also wants her to avoid all nuts including peanut butter until her next visit. Huh that is going to make meals a little more difficult. Oh well at least they are mild and she has a good shot of growing out of them in the next year.

Post 4
Livy went in for her Sweat Chloride test-it tests for cystic fibrosis. Here are the details for anyone interested and also so I can remember 5 years down the road. She had these metal things on her arms that make them feel like they are asleep for 5 minutes...I think it stimulates the sweat glands. Then they clean her arm and put some chemical on them also to stimulate the sweat glands. Then a small piece of gauze is put on her forearm, they wrap that with clear plastic, and then wrap that with something that looks like tape/plastic wrap, this is followed by the stuff they put on your cast. This is done to both arms. They looked really sandwiched and squished. Then we put her shirt back on and a coat w/ her hood. She had to hang out like this and move around as much as possible for 30 minutes. Moving was not an easy thing because this stuff covered her wrist so it was almost impossible to crawl. After the 30 minutes everything was taken off and the little gauze pieces collect and sent to be weighed. Now the weighing is done to make sure enough sweat was collected to do the test. In Livy's case, sure enough, there was not enough sweat for either arm. Now we have to go back and redo the test on Wednesday. I really don't think this is what she has but just as precautions I guess we need to rule it out.
Here is cute Livy during her sweat test. I really wish I could have gotten one of her arms without all the was pretty funny. If you look close you can see the purple cast stuff poking out. Also you can see her little hippo one of the nurses gave her. She LOVES this thing and carried it around the whole time. The nurse put the cast stuff on her hippo too to make Livy not so nervous. Livy cried as soon as the little identification bracelet was put on her ankle and pretty much anytime the nurse tried to touch her. She didn't have anything painful done but I am wondering if she remembers Monday.

Post 5
The sweat Chloride test didn't work again! I'm a little frustrated but oh well. I think she will have to do it again but we need to wait to hear from the doctor again. I really did everything I could I just don't think it is going to work. She had on so many clothes-fleece outfit, a beanie, thick socks, coat and fur hat plus her dress on that she was wearing when we got there. Did I mention it is 80 degrees outside. Not sure what it is going to take to get this test to work. On the plus side she had fun playing, got a new stuffed animal, and looked really cute all bundled up.

Post 6 Livy update 

Livy went to the dietitian on Friday. She hasn't gained weight and hasn't grown either. On a good note the dietitian said she is not underweight-she is very proportionate. She is just petite. I already knew this but it was nice to here someone so optimistic about it. She gave me some good suggestion on what to feed her and I also found out a few things I have been giving her that are bad...such as bread. Hopefully we can get her on the right track and growing and gaining weight. Now Livy's main problem is not that she is a little small-it is that she hasn't gained weight since her 9 month appointment (even with the two ounces gained this month she is still about 3 ounces less than 9 months) and she is only slightly taller than 9 months, and her head hasn't grown at all. Often this seems to be linked to picky eaters and lets just say Livy is not picky and never stops eating. I guess we still don't know the cause of this and maybe there is no reason. I hope changing her diet will be the answer.
Despite all of this I am very grateful that my children are for the most part healthy. I have a few friends that have had some scary incidents in the past few weeks with their kids and the ER. (and I am so glad their children are doing well) One mentioned how grateful she is that her son doesn't have something like a chronic illness and how hard that must be to go through that with your child. I have been having the same thought over the past month. We have been up to the children's hospital several times and it breaks my heart to see these sick little kids. I admire the parents and the children. They are a lot braver than I am. I hope this is never something anyone in my family has to go through. Seeing this is a good reminder of how blessed I really am.
Post 7
Livy went in to get her weight checked today. It didn't go to well. In one month she gained almost an ounce. Apparently she should be gaining a few ounces a week. The doctor said she is very concerned. So Monday we head to the hospital to try the sweat chloride test for the third time. This tests for cystic fibrosis. Livy's doctor said odds are she doesn't have it (thank goodness) but they have to rule it out before they can really do anything else. I hate that test, hopefully it will work this time. She also has to switch multivitamins to one with zinc, and needs to go to the follow up nutrition clinic-I think they test how well she is digesting food (I'm still trying to get her an appointment). On the positive she said everything feels good and she looks good. We just need to figure out why she stopped growing and isn't gaining weight. She goes back to the doctor to get her weight checked in two weeks. Really though isn't she just adorable.

Post 8 Great News!

Olivia went to the doctors today for her weight check and guess what...She GAINED 6 ounces!!!! Yes 6 ounces in only 2 weeks (now 17 pounds 7 ounces). I was so excited. I also had them measure her and she has grown almost 2 INCHES in 2 months (now 28 inches). I am not sure what we have done different but something must be working. She finally weighs more than she did at 9 months-still not on the charts but getting closer. We are so happy and the doctor was very pleased too. We will go back in one month to check her weight again-things are definitely looking up. She will still do another sweat test and go to the follow up nutrition clinic in September and the doctor will continue to monitor her weight gain (hopefully just monthly) but I think we are headed in the right direction.

Post 9 I am so excited!!!

Livy gained 14 ounces in one month!!!
She will go to the doctor next month for her well child check up and if she is still gaining weight and growing like she is suppose to then we will probably get to cancel the two tests scheduled in September. The doctor was shocked by her growth in the last month and a half (1 pound 4 ounces) and we are thinking it must have something to do with the allergies. So Hurray for Olivia she is now 18 pounds 5 ounces!

Here are a few extra pictures from the 4Th because she is so adorable and I have a hard time posting without pictures.

Update to the story: We went in for one more sweat test that didn't work again. We added even more clothes, 100 degree weather, and blasted the heater.  By this point we had determined it was allergies.

Here is an answer to one of the comments I received I thought it might be helpful.
Hi Cara, first make sure to check all of the boxes you would be surprised what has dairy in it. A lot of the food I fed her was what we were eating for dinner but leave out the dairy for example if I was making a casserole before I mixed in any dairy and cheese I would put that mixture in a muffin tin and make her mini casseroles, then add the rest for us. She ate a lot of beans, spaghetti w/ sauce, fruit, soy milk. honestly it is hard to add a lot variety. My daughter was lucky enough to out grow in after a year, I've heard that happens quite often. Also she started growing quickly after we changed her diet. If you would like some more ideas or just someone to talk to you can email me any time, :) Hope this helps

*A few more notes
1. Check labels!  under the list of ingredients it will have an allergy warning with the (includes the top 5 main-I think-allergies).  This is something I did wrong in the beginning.  I would give her a cookie but when you read the labels it says it contains milk!  This list will be your best friend.
2.  This was back in 2009.  I don't know if they still recommend soy milk.  I've read a few things that its actually not great for kids.  So check with a doctor please :)

Sorry it was such a long post but there's our story.    The ups and downs.  Hopefully it will give you some help if you are seeing a similar rash, an idea of what to expect if you ever have to do a sweat chloride test, some food ideas, and hopefully hope.  I was originally going to share the first post only but I think there is something useful in each one. 

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