Mild CF???..need help

[supermom1820]

Hi... New here.. I have 3 kids, ages 9, 8 and 16 months. My 9 and 8 year old are very healthy kids. My 16 month old well I can't remember the last time she was compelety well. I have just accepted the fact that she is always sick. It started when she was born at 36 weeks. But she seemed healthy. They informed me later that morning that she had to stay in the hospital as her blood sugars were very low. After a week though she came home. She was perfect. Until 2 weeks later. She started screaming, thrashing about, vomiting, diarrhea. At 6 weeks her Dr admitted her to hospital for severe dehydration, and blood in her stools. They ran tests and told me she had a milk protien allergy and GERD. She was referred to a GI dr who starte her on Zantac & Reglan. We spent every week at the Dr office. And boy did the after hours of the Peds office know me by first name. I was stressing. She was not getting better. We switched formulas to a Soy and she flipped out. Then we settled in with Alimentum, that seemed to be ok. Then we faced the weight loss issue. So weekly weight check it was. Then the doses of Mylanta began as her meds were not working and the Reglan was causing her to be stiff and ridged. The GI ordered a Endoscopy at 4 months. It confirmed that she had Esophagaitis. So she started Carafate. That was a dream, but Dr said it was only short term. Through all of this she had to be taken out of school as they could not handle her illness. My mom cared for her at home. Her diarrhea was still so bad she went into the ER 3 x for dehydration. She started to get very congested, and have this god awful runny nose and horrible wet cough. We had her on meds for a sinus infection for 28 days no change. They gave her meds for the cough no change. They switched meds and tried new meds. She deydrated very badly from the diarrhea and once again had IV to replenish fluids. FINALLY after 3 1/2 months of meds and sickness, they did a CT Scan of her sinuses and it revealed a very acute sinus infection. She was placed in the hospital for 4 days to undergo IV antibiotics. She seemed to get a bit better. They tried to place a PIC line in her and that failed. So she went home adn had to go to DR daily for Rocefin shots in her thighs, that was absolutely horrible. Then we had to give her another 28 days of oral meds. That made her better for no joke one week. She got another runny nose and still a nasty nasty cough. So now we are once again facing her with a sinus infection and a wet cough. They gave her meds for the cough but it did nothing, they have her on Clindomycin and Omnicef and not doing a thing. She goes Tuesday for another CT Scan and had an allergy test done 2 weeks ago that revealed she is allergic to nothing. Dad and I are wondering if more is going on with her. She was eating fine but losing weight and they had her on Pediasure to gain weight. Granted she is losing weight but she doesnt look sick, just tiny. But she was eating soo much we laughed how much she could eat, she ate an adult size portion for 3 meals and drinks enough juice to sink a ship. So we could not understand why she was losing weight. Now she is basically refusing food and only wants to drink. We tried to cut down the drinks to see if she would eat but no, she shakes her head no at food. I am soo beside myself and honestly CF has crossed my mind after runing into a parent with a child who had CF. SO my question is am I being outrageous asking dr to test her for it. I just can't stand going through this and having no idea what it is that makes her so sick...

any help or advice is well needed...
thanks!!

[chacha]

Hi, It sure sounds like you have been through alot and no real progress. I don't think it is outragous for you to ask your doctors about CF. He will most likely ask why you are asking, if there is any history of CF on either side of the family. Be prepared for that and possibly having to defend yourself and your decision for wanting the sweat test done. Some doctors may find it offensive that you ask about it, most should not.

I don't know if you have done any research on CF yet or what you may know already. Not all CF patients have lung involvement. There are people, adults, that have gone their entire life without being diagnosed. I recently heard of a woman that was diagnosed at 55 yrs. How amazing is that? So that is an example of how extreme CF can be. Some may have both lung and GI problems, others may only show signs of one of those, or even mild involvement of one (hardly noticeable) but chronic sinus problems. Most how ever it seems do have lung involvement at some point.

CF doesn't always have to have been in your family for you to have a child with CF. Our story for example. Our oldest daughter now 16 was diagnosed at the age of 3, just one week before our second and youngest daughter was born (now 13). Our doctor had no concrete reason for testing her but wanted to mark it off his list. She had no history of lung infections, not even so much as a bronchitis. She as not a failure to thrive, although small. She'd caught a stomach bug at the age of 2 and lost alot of weight due to diarhea and had trouble getting it back. Lungs were clear, no cough, good appetite, regular little girl really. Her Pediatrician was sure that she did not have CF but wanted to be sure. There was/is no history of it on either side of our families and I am 100% Hispanic, although my husband is caucasian. The odds were against us having a child with CF. Her sweat test came back high but he didn't believe the numbers and sent her to a larger hospital, one with a CF center (the one we would eventually go to for clinic) because the tests are sensitive and if the technician doing the test accidentally touched the gauze it could give a false reading. Once again the numbers came out high. The diagnosis somewhat set in, our second daughter was born and her cord blood tested and match up against her sister showed she was 99% likely to have CF as well. They matched up exactly. We searched our brains, had family looking back and trying to recall anything and come up with nothing. Finally the doctors at Duke told us that it didn't matter where it came from, that they had it and that it has to start somewhere. The chances that both of us were carriers was so slim, with no one in the family having CF, my being hispanic.

It seems that the doctors you are seeing aren't making any progress. What harm will it do to have the sweat test done? NONE! It can however give you peace of mind and a rule out for the doctors if it comes back OK. It doesn't hurt, so you won't be putting your child through any pain. My opinion, tell them about talking to that mom, and now you are wondering if that could be it and you would like a sweat test done, if only to rule it out and give you peace of mind. Ask that it be done at a CF center. I am trying to think of where Coral Springs is. Fl I know but where? Can't put my finger on it. Anyway... just so you are prepared when you ask, you can find out where a CF center is by going to the Cystic Fibrosis Foundation website. We are not allowed to post websites here or I would. It's simple to find though, just do a search for cystic fibrosis foundation and it should come right up first. It's a dot org site. There you can look for CF centers by state, you'll be able to see what is closest to you and that way you can ask that the test be done there. I don't know about your insurance co. but ours needs a referral from the primary doctor for anything specialty. Most times they are in a childrens hospital or at a university hospital.

I hope that I have been of some help to you today. Please let us know how things are going and what you have found out.

Chacha

[supermom1820]

Chacha,
We got the results back from her Ct Scan on Tuesday. They compared them to her CT Scan from Jan. After 30 days of two antibiotics, her sinuses are the maxillary and ephnoids are completely blocked. there is no improvement from the first CT Scan. In fact they believe the Maxillary are worse. That one in Jan was done after 2 months of meds. So they have me going to a childrens hospital to see an ENT surgeon to find out if there is a blockage, obstruction or possible that her sinuses did not form correctly. I am very nervous. But thanks for the advice before i am keeping this all in mind for my visit today.

God Bless

[chacha]

Hi agian, I hope all goes well at your appt. Poor thing, sinuses all clogged up. My oldest daughter had sinus surgery a little over a year ago. First time, so I'm told, some CF patients end up having to have sinus surgery every few years. My daughter however has been doing great since her surgery. (after a small complication resulting from her follow-up)

Were you able to actually see the photos of the scan? It is amazing when they show you all the sinuses, the blockage and what if any that is left open.

Keep us posted on how the appt. went.

Chacha

[supermom1820]

Chacha,
Well we saw the ENT friday, they wanted to do surgery that day. I did see her scans and there are absolutely no air pockets in her Maixllary and only a tiny bit in her ephnoids, which are about 95% blocked. They checked her ears and said that she has so much fluid behind her ears that her eardrums are bulging and they think she has lost some hearing in her left ear. The could not get a reading on friday. She has a major infection in her left ear as well and they put her on Lobrid,(spelling?) and want to see if they can get it under control before they do surgery, She said her sinuses are blocked and she needs to do the surgery to open them. She also said the tube form her war to her sinuses is very narrow and she believes it may not be formed properly. She also said she wants her tested for an immune defeicency. On the 23rd when she goes back we are going to ask for a CF test. I was so blown away when they told me she may have lost her hearing that I drifted off, dad could not make it to that appointment so I was by myself and cried the whole way home. I am praying for her please do the same.

thanks!!