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Board: Cystic Fibrosis 11-08-2011, 11:31 AM
Replies: 11
Views: 6,602
Posted By Ratatosk
Re: Could my child have CF

Have they done a fecal fat test for pancreatic insufficiency? That would determine if he's malabsorbing fat and needs digestive enzymes.
Board: Cystic Fibrosis 11-08-2011, 11:20 AM
Replies: 11
Views: 6,602
Posted By Ratatosk
Re: Could my child have CF

I would try to find a doctor who will treat the symptoms -- treat as if he does have CF. Ask that they do a respiratory culture to see if any common CF bugs are growing. With DS, he has one done...
Board: Cystic Fibrosis 11-04-2011, 07:22 AM
Replies: 11
Views: 6,602
Posted By Ratatosk
Re: Could my child have CF

I'd be concerned as well based on symptoms. If not CF, then there's obviously something else going on here. Has your child ever had a respiratory (throat or sputum) to test for common CF bugs. ...
Board: Cystic Fibrosis 09-19-2011, 02:15 PM
Replies: 1
Views: 1,691
Posted By Ratatosk
Re: Finer things in life.

My son is 8 as well and was diagnosed shortly after he was born. He pretty much leads a normal life though we have to do treatments and give him medication to keep his lungs happy and healthy. ...
Board: Cystic Fibrosis 09-10-2011, 07:06 AM
Replies: 11
Views: 6,602
Posted By Ratatosk
Re: Could my child have CF

I would push for genetic testing. There are over 1500 cf mutations and most doctors will do a sweat test first and then test for the 30-60 most common mutations.

DS was born with a bowel...
Board: Cystic Fibrosis 09-06-2011, 11:40 AM
Replies: 2
Views: 4,138
Posted By Ratatosk
Re: 18 month old diagnosed with Failure to Thrive

Not familiar with a metobolic specialist; however, ds has been seen by a gastrointestinal specialist. DS has pancreatic insufficiency due to cystic fibrosis, so without digestive enzymes taken...
Board: Liver & Pancreas Disorders 08-25-2011, 02:33 PM
Replies: 3
Views: 10,437
Posted By Ratatosk
Re: high bilirubin in young children 9-12

Was he specifically diagnosed with an allergy or did he just do better on a different formula and by avoiding certain foods? You mention digestive issues... Has he always had those type of issues? ...
Board: Digestive Disorders 08-19-2011, 02:00 PM
Replies: 1
Views: 2,843
Posted By Ratatosk
Re: SMA Syndrome recommended diet??

DS has cystic fibrosis and needs extra calories; however, he HATES those nutritional beverages. He also drinks enlive. For meals I mix up carnation instant breakfast powder with whole milk and...
Board: Infant Care (up to 18 months old) 08-19-2011, 01:53 PM
Replies: 2
Views: 1,818
Posted By Ratatosk
Re: Not gaining weight

Has the baby been tested for reflux? Sometimes it's a matter of having an anti-acid medicine such as zantac prescribed.

How are the babies stools? Normal or are they frequent, bulky, greasy---...
Board: Cystic Fibrosis 08-12-2011, 12:39 PM
Replies: 1
Views: 2,803
Posted By Ratatosk
Re: e.coli in infant's sputum

Are there any symptoms -- cough? While DS has never cultured e. coli, he DID come home from the NICU with a similar bug -- enterbactor choclae and he coughed so hard he'd throw up his formula.
...
Board: Ear, Nose & Throat 08-11-2011, 12:34 PM
Replies: 3
Views: 6,159
Posted By Ratatosk
Re: smelly tonsils, tonsil stones, & BB

Unfortunately, the only way to be free of all that nastiness is to have a tonsilectomy. I had similar issues -- my parents would mention my breath and I'd gargle, brush my teeth, chew gum...
Board: Children's Health 07-15-2011, 12:49 PM
Replies: 8
Views: 1,820
Posted By Ratatosk
Re: What could this be?

I would ask them to test for cystic fibrosis -- to rule it out. Frequent loose stools can be an indication of pancreatic insufficiency. If he were losing weight, they might be more concerned due to...
Board: Ear, Nose & Throat 07-14-2011, 01:13 PM
Replies: 1
Views: 757
Posted By Ratatosk
Re: 56yr old - tonsillectomy

I had mine out when I was about 35. I pretty much sucked on ice chips and drank tepid water constantly. I got tired of sweet things -- craved salt, so I ate tepid broth with mushed up saltine...
Board: Cystic Fibrosis 07-08-2011, 08:27 PM
Replies: 3
Views: 3,446
Posted By Ratatosk
Re: Infant (3 months) Failure to Thrive. Chance of CF

The advice we were given was to ask for testing and if they refuse, ask that be put in the file "Parents requested test for xxxx and physician declined because...." Usually it won't go that far,...
Board: Cystic Fibrosis 07-08-2011, 08:29 AM
Replies: 3
Views: 3,446
Posted By Ratatosk
Re: Infant (3 months) Failure to Thrive. Chance of CF

DS was diagnosed shortly after he was born due to a bowel obstruction caused by meconium illeus. He has to take digestive enzymes due to pancreatic insufficiency -- without them he was very loose...
Board: Children's Health 06-29-2011, 12:57 PM
Replies: 2
Views: 1,102
Posted By Ratatosk
Re: Looking for answers..

You said he was tested for Cystic Fibrosis. Did they just do a sweat test, did they test for more than a handful of mutations? There are over 1500 cf mutations and usually they only test for 30. ...
Board: Ear, Nose & Throat 06-24-2011, 12:04 PM
Replies: 1
Views: 4,956
Posted By Ratatosk
Re: white/yellow cyst or lump like apperance pic included

I'm unable to see the image, but wonder if it isn't maybe a tonsil stone. Does it feel like there's a little something stuck in your throat? If you push on your tonsils with your finger are you...
Board: Lung & Respiratory Disorders / COPD 06-21-2011, 02:19 PM
Replies: 2
Views: 5,387
Posted By Ratatosk
Re: lung problems pseudomonas

There's a new antibiotic out used to treat pseudomonas called Cayston. Some people have issues tolerating tobi and they use colliston. Others take oral cipro. Others have had to have IV...
Board: Cystic Fibrosis 05-16-2011, 07:29 AM
Replies: 2
Views: 2,324
Posted By Ratatosk
Re: Sleepless in Maryland...help!

Hopefully you'll be able to get in for an appointment in a timely manner and gets some answers, soon. The sweat tests don't take long and you should be able to get the results quickly.

Why is...
Board: Ear, Nose & Throat 05-05-2011, 06:58 AM
Replies: 10
Views: 2,611
Posted By Ratatosk
Re: help identify throat problem?

Before I had my tonsils removed, I had numerous spots like that on my tonsils -- tonsil stones and when I pushed on them, I'd usually get some whitish, yellow curdlike things that looked like...
Board: Bone Disorders 05-05-2011, 06:55 AM
Replies: 1
Views: 6,376
Posted By Ratatosk
Re: Larynx Pain - What could the problem be?

Could be a thyroid issue -- nodule? Years ago a doctor felt a lump on my neck -- ordered an ultrasound and they determined I had a thyroid nodule. Referred me to an endocrinologist who did a fine...
Board: Cystic Fibrosis 05-02-2011, 01:47 PM
Replies: 6
Views: 3,960
Posted By Ratatosk
Re: Daughters chane of having baby with Cystic Fibroisis

Unless she's had genetic testing you really won't know for sure whether she's just a carrier or has cf.
Board: Cystic Fibrosis 05-02-2011, 01:45 PM
Replies: 1
Views: 1,636
Posted By Ratatosk
Re: Just wondering....

I would push for genetic testing. DS had mainly digestive/bowel issues when he was born. No family history either side. Sweat test was normal; however, genetic blood testing indicated he had cf. ...
Board: Ear, Nose & Throat 04-29-2011, 12:45 PM
Replies: 10
Views: 2,611
Posted By Ratatosk
Re: help identify throat problem?

could be a tonsil stone. Have you tried gargling with salt water or pushing on them.
Board: Ear, Nose & Throat 04-29-2011, 12:42 PM
Replies: 2
Views: 2,208
Posted By Ratatosk
Re: Bump back of throat

With the yellow dot, it could very well be a tonsil stone.

Have you tried pushing on it with your finger or a cotton swab or gargling with warm salt water.
Board: Cystic Fibrosis 04-25-2011, 09:13 AM
Replies: 11
Views: 6,602
Posted By Ratatosk
Re: Could my child have CF

I would push for additional testing to figure out what's wrong with her as she does appear to have similar cf symptoms. As for family history, both DH & I have looked at geneology records that go...
Board: Children's Health 04-21-2011, 09:04 AM
Replies: 1
Views: 2,487
Posted By Ratatosk
Re: eggy breath

Could be her tonsils or sinuses. My parents had a similar complaint about my breath as a child. I always was sick with tonsilitis and as an adult, until I had my tonsils removed, I always made sure...
Board: Cystic Fibrosis 04-06-2011, 08:14 AM
Replies: 6
Views: 4,189
Posted By Ratatosk
Re: Hi I am new here and wanted to say hello

DS was diagnosed shortly after he was born. Was a huge shock, we went thru a full range of emotions -- similar to a grieving process -- anger, disbelief... You have to remember that your son is a...
Board: Children's Health 03-27-2011, 10:59 AM
Replies: 4
Views: 1,815
Posted By Ratatosk
Re: Unexplained vomiting

Has he been tested for reflux? A relative's son had awful reflux as a baby and took medication (zantac) to reduce the acid. Thought he outgrew it and a couple years ago he started vomiting and...
Board: Acne 03-24-2011, 01:43 PM
Replies: 4
Views: 8,261
Posted By Ratatosk
Re: Many small bumps on face

DS seems to have them, too. They're filled with a hard kernel of something -- keratin? Took him to the dermotologist twice and got him put on some topical ointments, but nothing seems to help
Board: Cystic Fibrosis 03-07-2011, 11:25 AM
Replies: 1
Views: 2,657
Posted By Ratatosk
Re: Note on diagnosing CF

I believe that's why the CFF recommends sweat testing be done at an accreditted cf facility. Also, with children under the age of one, there's a large percentage who test negative or borderline, yet...
Board: Cystic Fibrosis 02-23-2011, 08:04 AM
Replies: 1
Views: 2,698
Posted By Ratatosk
Re: Where to get genetic testing done in New York

Any clinic can take blood for you and have it sent to the major companies who do genetic testing. Ambry is one of the biggies and they're located in California. Quest also tests for over 1500...
Board: Cystic Fibrosis 02-08-2011, 05:05 AM
Replies: 1
Views: 2,760
Posted By Ratatosk
Re: Need suggestions for giving 2 year old Pancreatic Enzymes

DS hated applesauce, so we used babyfood bananas -- I've also used chocolate syrup, ketchup, jelly and babyfood pears, but the bananas were thicker and the enzyme beads seemed to stick better. I...
Board: Cystic Fibrosis 01-14-2011, 09:04 AM
Replies: 18
Views: 13,246
Posted By Ratatosk
Re: Question for anyone with sweat test in the 30's.

Jess Mom has some excellent advice. BTW, sweat tests need to be done at an accreditted CF facility. That in itself could cause differences in the results.
Board: Cystic Fibrosis 01-13-2011, 06:41 PM
Replies: 18
Views: 13,246
Posted By Ratatosk
Re: Question for anyone with sweat test in the 30's.

Unfortunately, I've heard similar stories all to often. No family history, low sweat test numbers, so that's all the farther doctors go unless the parents push for answers. Any clinic can order...
Board: Cystic Fibrosis 01-13-2011, 01:39 PM
Replies: 18
Views: 13,246
Posted By Ratatosk
Re: Question for anyone with sweat test in the 30's.

Ambry, Quest and Mayo all I believe test for over 1400 mutations, with deletions. I know of several people who in trying to rule out CF had nasal differential tests.

It sounds as if they're...
Board: Ear, Nose & Throat 12-29-2010, 12:08 PM
Replies: 4
Views: 13,500
Posted By Ratatosk
Re: Regarding torn tonsils

With my tonsils, they just kept oozing and shedding those white curds of nastiness. Mine actually started to bleed. When I finally opted for a tonsilectomy, my ENT said that they were full of...
Board: Bowel Disorders 12-16-2010, 12:33 PM
Replies: 2
Views: 986
Posted By Ratatosk
Re: 7yr old with diarrhea for 2+ years

Have they done a fecal elastase -- fecal fat test to see if she's malabsorbing fat? With the failure to thrive I would think they may want to test for pancreatic insufficiency, possibly cystic...
Board: Cystic Fibrosis 12-13-2010, 04:59 AM
Replies: 8
Views: 5,557
Posted By Ratatosk
Re: Could it be CF?

Not all people wcf have pancreatic insufficiency which can cause malabsorption of fats. So a normal fecal fat test is possible. Being that there are over 1500 mutations for cf symptoms can vary.
...
Board: Children's Health 12-08-2010, 07:20 AM
Replies: 5
Views: 6,060
Posted By Ratatosk
Re: 22mo with oily stools

I suppose you could research causes of malabsorption. Maybe there's a stomach bug or certain food that can cause this.

I've had to become a poop expert with DS and his cystic fibrosis because the...
Board: Children's Health 12-08-2010, 06:54 AM
Replies: 5
Views: 6,060
Posted By Ratatosk
Re: 22mo with oily stools

Has he had issues in the past with diapers -- larger, bulky, frequent stools. Sometimes shiny or fluffy like frosting --- and that you're just noticing the oil in the toilet with the potty training?...
Board: Ear, Nose & Throat 12-06-2010, 09:46 AM
Replies: 3
Views: 1,386
Posted By Ratatosk
Re: A couple of tonsil questions

My story is similar to Titchou's. Numerous bouts of tonsilitis as a child. On antibiotics for years. My tonsils were chronically infected. Full of tonsil stones, but doctors would tell me that...
Board: Bowel Disorders 11-18-2010, 01:41 PM
Replies: 6
Views: 2,364
Posted By Ratatosk
Re: Poo Poo Purgatory!

Sounds like you could have some sort of pancreatic insufficiency based on the fecal fat test and greasy stools, which indicate some sort of malabsorption. IMO, contact a GI person. DS has cystic...
Board: Children's Health 11-16-2010, 08:27 AM
Replies: 9
Views: 9,799
Posted By Ratatosk
Re: What could be wrong with my 6 year old?

I still contend that the majority of those symptoms are those of cystic fibrosis. IMO, get tested to rule it out. The gi issues, the sinus issues, junky cough, reflux, malapsorption, failure to...
Board: Cystic Fibrosis 11-14-2010, 06:40 PM
Replies: 8
Views: 5,557
Posted By Ratatosk
Re: Could it be CF?

DS was diagnosed due to a bowel obstruction caused by meconium illeus. Without digestive enzymes he has frequent, sometimes oily, bulky stools. He does sweat a lot, but not sure if it's a cf thing....
Board: Infant Care (up to 18 months old) 11-01-2010, 07:43 AM
Replies: 4
Views: 2,212
Posted By Ratatosk
Re: vitamin D supplements?

If you breast feed, you may need to supplement Vitamin D. My cousin was told by the pediatrician to supplement and there are a couple OTC vitamin drops that can be used for this -- simply D is one...
Board: Cystic Fibrosis 11-01-2010, 07:39 AM
Replies: 7
Views: 9,510
Posted By Ratatosk
Re: Daughter of 13 diagnosed with CF three days ago

I'm not sure if it'd qualify for malpractice unless you specficially requested that she be tested for CF and they refused. As a parent of a child wcf, who was diagnosed shortly after he was born due...
Board: Children's Health 10-04-2010, 07:12 AM
Replies: 9
Views: 9,799
Posted By Ratatosk
Re: What could be wrong with my 6 year old?

Has he ever been tested -- GENETIC BLOOD TESTING --- for Cystic Fibrosis. Not the sweat test, but actual blood tests. My son's sweat test was NORMAL -- NOT inconclusive; however, genetic blood...
Board: Cystic Fibrosis 09-24-2010, 07:58 AM
Replies: 8
Views: 5,557
Posted By Ratatosk
Re: Could it be CF?

I'm not a fan of sweat tests because my son's results were normal -- 32. The only way to know for sure is to have genetic blood testing conducted. DS was tested for about 90 of the most common...
Board: Children's Health 09-21-2010, 11:54 AM
Replies: 3
Views: 17,419
Posted By Ratatosk
Re: my five year old is always sick, the blood results vary and and i'm frustrated!

Does he still have his tonsils & adenoids? On DH's side of the family it seems like most of the kids, cousin's kids, nieces, nephews have chronic ear infections, throat infections and once their...
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