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Old 10-13-2011, 07:57 AM   #1
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Question UPDATE:4/6 Almost 7 years of chronic illness, finally getting help! Many updates!

This has become our journal to a healthier Cayden. I update every month with the newest diagnosis and lab reports.

Thanks to all of the momas who have helped us through our rough journey! God bless you all!







I sensitive subjects and here to get more feedback.




10/14/11
Cayden has been ill on and off begining at birth. It started with being unable to digest my bm. I bf him till he was 1, we worked through it. He had projectile vomiting and loads of spitup. He did thrive and was a very plump baby. (we did try all the formulas, just to stay with bm) Throughout the years, he has suffered with reflux, constipation, diarrhea, horribly stinkey stools, and heart burn. The Dr. has know of all of his issues as we allways seem to be in their office. He is 46.6 lbs (can't remember his height, but short) and almost 7 now. We were told he was in the 60th percentile, but he really is a small guy. Dispite being STARVING ALL of the time. He wears size 5 and 6 cloths. Then there is the allergies. He was never able to wear sposies and any normal detergent would break him out horribly as a baby. I once used the huggies disposable washcloths on him (they were hyperallergenis) and he broke out in severe hives. He has seasional allergies as well.

Then on to our main troubles. They are mostly in the fall and winter and also in the allergy seasions. Every cold he catches, no matter how small (he catches every bug he comes into contact with), ends up with nights of resp distress with wheezing, barking, and stridor. All these years, we have been blown off and told he just had the croup. Children his age normally don't get croup. Or, it's just a cold, perhaps he has something anatomical. A couple of years back, it got so bad we were given him a albuterol updraft machine for his flareups. So after last weekends trip to the ER, we got a refurral to a pulmonologist. I was tired of out DR. telling us he wasn't wheezing so I taped the last resp distress event. The new Dr. we just saw yesterday watched the whole thing and was allarmed how bad he got and how bad his chest would cave in with every struggeling breath for air. She listened attentivley to every symptom Cayden had had continously over the years. She was upset that our DR. was not as worried about him as much as we all were. He has other symptoms like constant caughing too. They did many tests, but didn't have enough time for the sweat test. We go back in 4 weeks for that. She did put him on a heavy regimn of medications. She is planning on having a consult with a GI specialist and perhaps scoping Cayden.

She is very worried about how all of his symptoms combined seam to point to cystic fibrosis. Forgot to mention the eczema too. I just don't see how these concerns could have bean missed by our DR. I have had her do multiple stool labs as well. She refused to even give up more albuterol when we were there, even after watching a moment of the tape. I am quite aggrivated with her at the moment. I don't want to think the worst believing the sweat test will come back positive, but it's difficult. If we had not had the updraft machine and albuterol this last weekend, we would have been forced to call 911 and who knows if he would have made it. Cayden told me the next day, "mommy, I thought my heart was going to stop bumping and I would die". He then threw himself on the floor and played dead. I'm exausted of these episodes and seeing the fear in his little eyes, struggeling for each breath.

I'm thankfull we finally found a Dr.that is hearing and sharing our concerns.
I'm sorry this is so long, I just don't really have anyone to share this with. So I was wondering, Is there any other momas on here having any simular issues with their children? Perhaps any momas with children suffering from CF?

TIA for tose who took the time to read our story! Any advice or charing would be greatly appriceated!
Have a blessed day, Sarah.

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Old 10-13-2011, 08:11 AM   #2
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Big :hug: to you mama! I don't have a child with CF but during my pregnancy found out both my husband and I are carriers, as is our dd. This will change how we appproach ever getting pregnant again. I thought they tested all newborns for CF in the newborn screening, but I could be wrong.

Whatever the case, you are doing an amazing job being an advocate for your ds!! Don't give up! It's so frustrating to go to the people who are supposed to have your best interest in mind and care for you as a whole, only to be written off. I am so glad you were able to find a dr to do this for him. Just hang in there mama, keep pressing for the proper treatment.
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Old 10-13-2011, 08:23 AM   #3
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Re: After 6 yrs of illness, possibly cystic fibrosis?

Thank you so very much! It is frustrating. Especilly being treated as if I'm overeacting. I just need an answer so we can go forward with the proper treatment and perhaps get him a better quality of life. I was told that they started the infant screening the year after Cayden was born. I wish we hadn't missed that, or have been screaned ourselves. I'm so sorry you are both carriers. It's wonderfull your lo does not have it.
:huggs: Thanks hun!
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Old 10-14-2011, 01:21 PM   #4
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Re: After 6 yrs of illness, possibly cystic fibrosis?

Mama!

He sure sounds like one of my kiddos!

Incidentally we did go through the CF testing too - because my son had extreme lack of energy. It was negative for him.

If your little one ends up like my son he didn't have CF but instead is medically complex. My little guy has/or has outgrown--
reflux (takes in spitting up, heart burn)
allergies and excema (which go hand in hand)
hypothyroidism (which causes constipation, and slow growth and GI trouble)
asthma (takes in breathing issues and goes with the allergies)
the low white blood cells (or getting sick all the time) and it REALLY hanging on goes with asthma

He also has 7 other diagnosis/disorders/delays which don't relate.

I am REALLY glad you pushed for another opinion. We've had hundreds of medical professionals over the years working with my son. When someone doesn't take me seriously, or ignores things, they no longer see my child. It took me a LONG time to get to that point but my time is too important and his health to important to waste time on people who don't take us seriously. We now work with an amazing team, all of whom I trust with his life, most of whom I LOVE like family.

Oh and if you are curious what a child with several complex disorders looks like?I can promise you would NEVER spot him out in a crowd. Although he can sure give directions if you are lost at Children's hospital

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Old 10-14-2011, 03:24 PM   #5
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Re: After 6 yrs of illness, possibly cystic fibrosis?

It can cause all his problems and the eczema too.
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Old 10-14-2011, 04:23 PM   #6
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Re: After 6 yrs of illness, possibly cystic fibrosis?

Since Cayden was born we have had 4 homes. We just bought this place and settled in. So it's not that. We did think about that while renting our last place but honestly, he had all the same things ging on before then. There's not much we havn't wondered about.

Thanks momas!!
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Old 10-15-2011, 09:07 AM   #7
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Re: After 6 yrs of illness, possibly cystic fibrosis?

It certainly could be CF, especially since he was born before newborn screening. If that is negative, I would suggest you check in with an allergist or GI doctor. Sometimes, kids can have food allergies that can cause a lot of the issues you are describing. Diary is a common one. When you were breastfeeding, you could have been eating something that your son was allergic to and he was having reactions to the food/drink in the breastmilk. Just a thought. Good luck and let us know how his sweat test went.

Also, I'm a carrier of CF and am currently pregnant. But I am also a genetic counselor who sees a LOT of kiddos with CF so if the sweat comes back positive and you have questions, please pm me!
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Old 10-15-2011, 10:02 AM   #8
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Re: After 6 yrs of illness, possibly cystic fibrosis?

Thank you so very much! I was barely able to eat anything while bf'ing. Ha, I was only eating bland and basic. Anything elese would make him so ill. You hit that right on the head!

I'll deff update the thread with any new info we get. The Dr. did say she wanted to get a GI specialist involved as well. I'm anxious about what the first step of allergy tests are going to have to say.

Thanks again hun!
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Old 11-03-2011, 06:45 PM   #9
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I'm so sorry you're dealing with all this. I also would second some food allergy testing. My 5 (almost 6) yr old was always sick- asthma, reflux, ecsema, croup constantly. He had his tonsils/adenoids out. He was also delayed in speech & had EI services. I took him to the ENT and had allergy testing done and found out he had a dairy allergy. That was the only Iga allergy that came back. I then took him to see a naturopathic md and they did further allergy testing and he has multiple food allergies. I eliminated all foods that came back as causing increased inflammation & he's like a different kid. Hasn't had croup in almost 2 yrs! He is no longer getting extra help at school & is in the 1st grade. Changing his diet has literally changed his life. If I didn't trust my gut I would still be listening to my pediatrician who when I asked 4 yrs ago if he could have a dairy allergy laughed in my face. I never thought food had such a powerful effect on our bodies but I've seen it first hand. Hopefully it's not CF & is something like an allergy. Praying for you!
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Old 11-07-2011, 04:41 PM   #10
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I have CF. I would be happy to answer questions. Pm me or post here. Has your son had a sweat test?? the eczema correlation is one I have never heard.

There is a really great support community online for CF'ers and their families.

I am here if you need me!
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