Hoping for some hope...

[anonymous]

I have posted my story before, but I wanted to get feedback.

My 11 month old, spent 3 months in the NICU. She had what they are calling a Meconium Cyst Formation secondary to Peritonitis. I'm not quite sure what that means but they say it's not ileus. I just went with my hospital on a conference in Nashville (I'm from Ohio) and I got to speak one on one with the neonatologist who explained that her condition was only one in two that he'd ever seen in his 25 years of practice. He also informed me that her chances of having CF are relatively low due to her progress and current health. She's walking, talking and only experienced mild RSV. I'm still scared, CF isn't in our family that we are aware of...

I'm currently looking into a legal issue with my OB for not listening to me when I told him something was wrong and failing to do give me my requested ultrasounds, even when I was in preterm labor at 31 weeks. I realize I have a healthy baby and a lot to be thankful for, however no parent should have to go through a surprise like this... when technology is readily available for things like this.

I have started up an online infant intestinal disorder education and awareness website at:
<a target=new class=ftalternatingbarlinklarge href="http://myiidea.tripod.com">http://myiidea.tripod.com</a> in hopes of networking with other families.. I hope that you can offer some feedback and words of support whether they are what I want to hear or not.

Thank You!

Amy

 

[rose4cale]

Hi Amy. I don't know anything about the condition you listed for your little one. I was wondering though if they are still going to test for CF? My question being in the Dr that you talked to, that he mentioned he doesn't think it's CF because she is walking and talking at 11 months really doesn't have anything to do with CF. My son is so smart and beyond his 2 years of age. Also, CF wasn't in our family history either. Those aren't substantial enough reasons to rule out CF. RSV is something to be concerned about as well. Just my thoughts.

 

[anonymous]

Thanks for responding, I don't think he was saying that because she's doing those things, i think it was more a long the lines of genetics and that she hasn't had any further intestinal or bowel issues...

we did the sweat test at 6 months and she wouldn't sweat enough, so we are waiting for the surgeons office to call to set up another one.

I'm pretty nervous... I was hoping that her 5 surgeries would be the end of the madness. The doctor telling that info was a neonatologist and was basically going off of what he saw in her and his own research but I do realize he's not giving me a diagnosis. Thanks for your input!!

Amy

 

[rose4cale]

I hope you get some answers. It is so frustrating to not know what is wrong with you little ones. My son also didn't sweat enough for like 5 tests and they finally did the blood test, which of course came back positive. Does she have any other CF symptoms? My son was pretty text book though it took 3 Drs to take me serious. When I finally got him to the University of Iowa Hospitals, I could tell they were pretty sure he had it. You could see the light bulb above their heads!

Good Luck in your search for answers!

 

[anonymous]

Shelly,

It is very frusterating, I feel like i'm in a dark hole all alone. Her tummy condition is so rare that there is NO support groups and very little information.

She really has no other symptoms of CF other than her initial obstruction, which was described to me like this:

her intestines twisted, and like a hose does... it bubbled up with Meconium and burst, allowing the Meconium to spill into her volvulus and form a cyst that grew 10 cm in diameter and 10 oz in weight.

Her bowel movements vary depending on what she's eating but I contribute the foul smell to her formula, it's Neocate. When I give her that, he poop is a mucusy green form, but when I give her food it's a normal baby poop green form.

The neonatologist did tell me that because her initial CF blood test was negative, it was a lower risk for CF to come out on the sweat test, but it should be done to rule it out.

Thanks again for responding, it's helpful to have someone to talk to.

Amy

 

[rose4cale]

Well if you will find someone with the same condition, I guess it would be through the internet! She's been through a lot in her 11 months and you too! If the blood test for CF was negative, then I think that is a pretty reliable source. But there's so many more unanswered questions I'm sure. Hopefully someone else on here will know of something helpful.

Best wishes!

 

[anonymous]

Well, I am not sure of what you are going through exactly as far as legally but I wish you luck! I think one thing that women need to keep in mind when choosing an OB is making sure they find one who will take care of our needs/wishes. I switched OB's when I was something like 25+ weeks bc I realized that my OB was a "by the book" guy and was not into taking things "case by case". Luckily, the first person I interviewed when I was switching was WONDERFUL (also a midwife not an OB) and she let me know right away that she always takes a patients' gut feelings into consideration. I say this only in case you do have another child someday because it is just terrible for women to have to go through having someone blow off their gut feelings about our children (and especially to find out later that you WERE right). Okay, I am getting off my soapbox!! BTW, my daughter was born in Cols, OH <img src="i/expressions/face-icon-small-smile.gif" border="0">

My daughter was not diagnosed with CF until after her first birthday. She was healthy (only had a mild RSV which she was over in less than a week at 8 months), walked, climbed, never complained of feeling yucky, etc. We have no other family members with CF (thankfully) and were SHOCKED at her diagnosis!

Oh ya, I don't think that green is ever a "normal" color for a baby to have on a regular basis - but I am no expert (although I have changed LOTS of baby diapers as I worked in a daycare for 3 years during college-saw LOTS of POOP there!). But maybe hers is green bc of her bowel history?

I looked at your site, it looks really nice. I hope you are able to connect with more people who have experience with this. I would like to encourage you to continue to pursue ruling out CF (sweat test and blood test) and wish you and Kamryn (who is as beautiful as her name!) the best!

Hugs,
Kelli (mom of Sydney 2wcf)
<a target=new class=ftalternatingbarlinklarge href="http://members.tripod.com/sydneymyers-ivil/">http://members.tripod.com/sydneymyers-ivil/</a>

 

[anonymous]

Kelli,

Thank you for responding to my post. Allow me to explain my OB situation. My first child was born in Akron where I knew that she was in good hands. My OB up there would give me ultrasounds as I requested and never double questioned my intuitions. We moved back home and when I found out I was pregnant, I did my research and found that in our small town, this OB was a high risk doctor and many people liked him. I was uneasy with him, I always felt rushed and that he was blowing me off... but I felt that maybe I was just being paranoid, after all he was high risk... I am not one to sue doctors because i'm a firm believer if you don't like your doctor, get a new one. But this wasn't the case... he was a kind man, very soft spoken... I just figured maybe he knew what he was doing. It wasn't until the very end of my pregnancy that my intuition got the best of me, but by this time it was too late. I had preterm labor at 31 weeks and asked him to give me an ultrasound, he declined stating that insurance companies only cover two ultrasounds... which I found out was bull. When I confronted him with this his response was that it wasn't his job to know who is patients carried for insurance. I questioned what exactly it was that his billing clerk did to get paid in his office. He declined to answer. At 37 weeks I asked him to take me off of work, my pain was so excrutiating that I cried several times a day, he declined. At this point, I just wanted to have my baby, so I decided when the pain was unbearable I was going to bypass him and go to the ER. If the baby wasn't healthy, I was switching OB's. The baby was trying to come... they did an ultrasound to check amniotic fluid and found the mass.. the switching doctors was done automatically as I was transported to Akron for an emergency c-section. I do not plan on having any more but if I do, it will be with an OB in Akron.

Thank you for sharing Sydney with me. I am beginning to feel a little better about the possibility of Kamryn having CF. After all, it's a condition not a disease.. and we can conquer anything she's already proven that! I haven't been able to access your website because ironically my computer hates tripod, but I will keep trying!

Thanks again.

Amy

 

[anonymous]

Hi Amy,

I have to agree with Kelly about the green poop. My youngest daughter, Samantha, was diagnosed at three months. I knew something was not right because EVERY stool was a bright lime green color, sometimes with mucous, sometimes without. Sometimes, they were even a pale gray or chalky white. I kept waiting for her to have those golden yellow stools that I had become familiar with after my first two daughters. She never did.

Showing a green stool to the pediatrician actually led her down the road to diagnosis. The ped. sent us to a gastroenterologist who also examined the green stool and suggested a sweat test. We were lucky to have observant and informed doctors, unfortunately, that is not always the case.

I wish you and your daughter the very best, please keep us informed.

Maria (mother of three, the youngest, Sami w/cf)

 

[anonymous]

Amy, thanks for sharing more details about your OB experience and I am SO sorry that your OB was such a jerk! I cannot imagine what it was like to go through that. It makes me SO MAD just thinking about it, especially knowing that you were right (even if Kamryn was fine, it would have made me upset, but to know that she was having troubles makes it all the worse...).

Anyway, my computer hates tripod sometimes too! Actually, I sometimes wonder if Tripod just has some kinks in it (their websites used to be ivillage.com but tripod took them over this spring - in case you didn't know that). Anyway, I will check back on your website from time to time looking for updates/pictures, etc.

Hugs,
Kelli (mom of Sydney 2wcf)