Ped suggesting possible CF for my son w/autism.

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AutismMom
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Date Joined Oct 2008
Total Posts : 2
   Posted 10/2/2008 6:17 PM (GMT -7)   
Hello, I know you get many posts from worried mothers like the one I'm about to present.

My son is 4 and was diagnosed with autism at the age of 23 months. Since that time he's had chronic diarrhea. Often times it's had yeast, mucous, and low sigA, and fat. We thought it was related to colitis that often coincides with autism. Throughout this time I've been nagging his ped for answers. Only recently did she order a stool analysis after my insistence. Like I thought it came back with moderate amounts of fat indicating malabsorption. She once again mentioned cystic fibrosis to me.

Well being much less informed on CF then I thought I thought the idea was crazy. He's never had an upper respitory infection. She discussed his history and stool results with several GIs who recommended a sweat chloride test.

My questions for you knowledgable members. Are there true mutations of CF? Is it possible that my son who has never had an URI possibly have CF? My head is spinning because autism has been such a battle for us. My son is unable to speak and it's the one thing about his autism that's broke our heart. To compound the autism with worries of CF is just overwhelming.

As a sidenote I'd mention other things in his medical history that are probably not relevant but still worth noting. He has strabismus and had hypospadias.

Also throughout the years our charity of choice has always been cystic fibrosis, the phrase "65 Roses" touched our hearts.

Angela

Gemsi
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Date Joined Feb 2007
Total Posts : 1050
   Posted 10/3/2008 9:09 AM (GMT -7)   
Hi there,

You'll have to excuse me, just got back from holiday today, so still have a bit of a numb brain from all travelling. I didn't want too leave you hanging on for an answer though.

It sounds like your son has already been through so much already, and the CF possibility now, must seem like another huge weight.

It is possible for people with CF o be in there 30's before they are even diagnosed. One of my friends got to age 14 without any trouble whatsoever, not even knowing she had CF. There are many many different mutations with CF, and every single person with CF is different. Some may have more tummy trouble thn lung trouble, some more lung than tummy, and some a mix of the 2. CF is quite new really, and therefore because of the complexcity of CF, it's almost impossible too say 'yes this is a very typical case of CF'. It is possible for a child as young as yours to have not yet got an infection, or had any chest problems. My little brother was and is still like this, he's 20 now, and never really had much in the way of chest trouble, but has been hospitalised quite a lot for stomach problems.

For now, I think that's really all the info I can give, though I will come back later and update once my brains reading things a bit better.

All the best
Gem
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
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AutismMom
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Date Joined Oct 2008
Total Posts : 2
   Posted 10/4/2008 5:52 PM (GMT -7)   

Thank you for your reply Gem. After my research I've realized CF is not as I always thought it was. Then again autism wasn't either.

He's scheduled for the sweat test on the 15th. He also has genetic testing scheduled in November. We'll know for sure soon.

I'm assuming prognosis is much better for those with the milder versions of CF?

We have him on The Specific Carbohydrate Diet now and it's helped his stools a little.

 

Angela....Brady's Mom


Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 10/8/2008 1:15 PM (GMT -7)   
Hi there,

I agree with you about prognosis being better for people with milder CF symptoms. Unfortunately there will never be a definate answer though with a child with CF, as too exctly how long they've got. 31 is average, but then there are people who live too be 60, yet others who don't make it to 31. Attitudes to CF now are weird in the UK. Basically the idea is, they treat aggresively as children to get them through to adulthood, then in adulthood it's all about teaching you too manage your condition.

I've not heard of the diet, but then I've not heard of any real specific diets. Over here, we get told just too eat as much junk as possible, and snack whenever we aren't hungry, with the next line being dietry supplements, then full over-night feeds if nothing else is working. So, unfortunately can't provide you with the any info about whether you have your child on the right diet. I do't now about carbohydrates, but I find a high calorie diet the best way to maintain my weight, and the easiest to digest with no need for enzymes.

I think once all tests are done, it will be much better for you, as you will know what you're dealing with, and how to go about treating it.
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus


Bennysmom
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 10/14/2008 11:27 AM (GMT -7)   
What is a milder form of CF?

Bennysmom
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 10/14/2008 11:47 AM (GMT -7)   

I am so confused. If a sweat test came back negative but you are still showing exact syptoms of CF, could it have been a false negative?

My son has carrier status, and he is always sick. Could he have a milder form of CF?


blondie6195
New Member


Date Joined Oct 2008
Total Posts : 8
   Posted 10/28/2008 10:40 PM (GMT -7)   
no your doctors would have diagnosed him with it and if he is a carrier he may have a lower immune system but not CF

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 10/29/2008 12:08 AM (GMT -7)   
Not exactly that,

I aksed Benny'smom on another thread, whether it was a definate negative or a borderline result. If it turned out to be a borderline, then another test needed to be done, as that is a grey area. I've heard of dcotors who've just said neg, because they didn't quite understand the scoring themselves.

The test is never 100% accurate. I don't think you can half any false posetives, but you can have false negatives.

I believe Benny was going for extra testing, from my memory. How did that go Benny's mom if you come back to read this.

All the best
Gem
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus


Bennysmom
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 10/29/2008 9:39 AM (GMT -7)   

We went for another sweat test and they said it came out negative. They could not give me the reference value though. I asked them to send the results to me.

We are having the Ambry Genetics test done to check for a rare mutation. We should get the results in 4 weeks?

I am just confused about a "milder" form of CF. Is there such a thing? When the full CF panel comes back will we know if it is a "milder" form?? 


Bennysmom
New Member


Date Joined Oct 2008
Total Posts : 6
   Posted 10/29/2008 9:46 AM (GMT -7)   
Benny has many of the GI systems and we have gone for many tests-Most recently his fecal elaste test came back elevated. I am trying to figure out what that means?
Also, He had his first asthma attack a few months ago. He also has peanut and tree nut allergies. The GI Doctor basically said to me that my son was a mystery. He is to me too. His Pedi cannot figure it out either. He tested negative for cealic as well. I just do not understand what is medically wrong with my son.
All his symptoms come back as a milder form of CF. Is that possible???????
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