Guest guest Posted June 6, 2000 Report Share Posted June 6, 2000 Hi Meg, You know, thinking back on it, I realize that one of 's big concerns when I was expecting was whether the baby would die. Interesting. At the time I thought it was because I had lost so many pregnancies, which knew about. But now I am wondering if the CF factor played into it too. I do know that the whole pregnancy was a very delicate time for . She was thrilled to death that she was going to get a sister, but also very nervous about what it meant to her. My mom says that her favorite memory of the night I had the baby was coming to Mom's bedroom (Mom was staying with us, so Dan and I could go to the hospital) and just jumping up and down, because she could not contain her excitement, as she told Mom that Dan had called and the baby had arrived. Mom said she was practically walking on the ceiling she was so excited. And the next day at the hospital when I saw her she was in awe, and would barely whisper a word. E (mother of , 11 wcf, but not so excited with her sister now that she can get into her room, and , 3 nocf, but very adept at getting into said room) Re: Meg's Questions > , > Therapy did help Moe a lot at first and then less so we stopped it. We found > that it was hard for her to find something to talk about every week. When it > comes to the pregnancy she is Very excited but at the same time very scared > for the baby. She is always asking what will I do if the baby has CF. My > answer to her is well we just have to schedule your appointments on the same > day. She has asked once or twice what would I do if the baby died when it > was born. That really threw me but I just said we have to see what God has > planned and pray for the best. Maybe its because she found out so much older > than most that she has CF it makes it a big concern for her. I keep telling > her that thanks to her this baby would never have to wait long to find out if > the baby was sick. We all go for a sonogram on the 17th (it's also my > birthday) The Girls are so excited. I am hoping once she sees everything is > all right she will be more at ease. > > The one really good thing that did come from therapy was that someone else > besides me was able to tell her how important her treatments were whether it > was > TOBI, enzymes etc.. she is as much in charge of her health as the Drs. and me. > It was also a good was for her to deal with a lot of anger. She was able to > just get PISSED and say out loud that CF Sucks and not worry that anyone was > going to get upset with her. Sometimes they need to hear from someone else > that it's all right to be angry and you need to put your anger in a > constructive place. > > Meg > > ------------------------------------------------------------------------ > Accurate impartial advice on everything from laptops to table saws. > http://click./1/4634/6/_/480698/_/959875502/ > ------------------------------------------------------------------------ > > *********************** > This is a secular list. > *********************** > > -------------------------------------------------- > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsonelist > Subscribe: cfparents-subscribeonelist > Unsubscribe: cfparents-unsubscribeonelist > List owner: cfparents-owneronelist > _________________________________________________ > > WE HAVE A CHAT PAGE!!! http://www.onelist.com/chat/cfparents > _________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2000 Report Share Posted July 20, 2000 Meg, I did not realize, or maybe I'd forgotten, that Moe was not diagnosed until she was 8. How did her diagnosis come about? (Maybe I've forgotten this too? If so, I apologize and must plead " heat " as an excuse since it was over 100 again here today.) As to taking enzymes in public, I'm pretty matter-of-fact about it. I figure that RAchel and I know what is going on, and it is nobody else's business. If they did ask I would be happy to explain though. And I TOTALLY agree with you that it is wonderful in retrospect not to have dealed with the pill issue when these kids were small. E Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2000 Report Share Posted July 21, 2000 Maureen has always had slight respiratory difficulty but nothing that would have sent up any flags. When she was 5yrs old the digestive problems really came on strong she was so impacted but no one knew why. We saw one Gastro in Westchester and he could not figure anything out. He thought she had Celiac then those test were negative and then we did 4 to 5 colonscopes all showing nothing due to impaction. On the last one they admitted her and cleaned her out themselves but no luck she was still impacted and nobody could tell us why. There was a girl in the bed next to her with CF and her mother really tried to impress upon me how many similar things they had. All the Interns kept asking if she was there for a sweat test too because they noticed such clubbing in her fingers and toes. When I asked for one her Gastro said I was crazy she did not present at all. We waited for the results of the colon scope which ended up showing Crohn's This did not explain the impaction. I asked for a cat scan of her ab to see how impacted she was he told me he did not want to put radiation in her but maybe we would do another scope at this point I had enough. He had all the results of Crohn's and would not diagnosis her with it because he claimed she did not have it yet the medication for it (asacol an anti-inflammatory) seemed to be helping a little. He had her on a high fiber diet which was killing her. So we left for NYC and found a new doctor. He took one look at her and did a blood test for Crohn's then took all her biopsies to his pathologist and ordered a CT . That's when I knew I was with the right guy. In less then a week later he ordered a sweat test. In less than a month we had both diagnosis and she started feeling better she went from the 10 percentile to now she's in the 40's. Once I got the diagnosis I can't say I was devastated because for me it was more relief Finally we knew what we were dealing with. 8yrs of having a kid that was always sick and always had stinky BM's no matter what she ate or didn't eat and all her periodic respiratory problems made sense. At one point I thought I must be really overeacting and putting more on this than it is. But then she would be in so much belly pain or back into asthma problems or coughing for 90 days straight. I was really lucky I was so crazy they told me I was the one who kept her so healthy! That was better that I was crazy to ever think she had CF. It was tough getting through all of this and I did see that I am a strong person because of it. But it also makes me realize that if this baby has CF it will never be what we went through with Moe We will know in months instead of years. Sorry I rambled! Meg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2000 Report Share Posted July 21, 2000 In a message dated 7/21/00 2:34:11 PM Eastern Daylight Time, MMolls@... writes: << We saw one Gastro in Westchester and he could not figure anything out. >> Meg, Are you talking about Dr. Glassman? We saw him in Westchester when was 4 months old, and he failed to diagnose despite some telling symptoms (all GI!) All he wanted to do was give him colonoscopies (the first time he mentioned it to the pediatrician, was 5 weeks old) and make me stop nursing. Don't even get me started on this shmuck. He just insisited that was allergic to my breastmilk and that he would be fine on formula. I even asked if he is having trouble digesting fats, and he totally blew me off! He didn't even realize the hypopigmentation in 's hair, a sure sign of malnourishment! could've been diagnosed so much sooner had he done his job decently. The other GI we took to made the diagnosis after speaking with us for about 2 minutes! Oh well, sorry to ramble! Stay well! Fondly, Liz {MOm to , 8, and , 5 w/CF} Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2000 Report Share Posted July 21, 2000 Liz Did you see Glassman at Westchester Med? If you did then he was in the same group of Schmucks we saw. Ours was Dr. Halata Biggest Quack that side of the Hudson! I had Glassman's name but by that time my attitude on Westchester had hit rock bottom and I felt the only help we would get was in NYC. Are you in Fairfield County? Meg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2000 Report Share Posted July 21, 2000 Meg, now thats one more diagnosis story from He#@. Geez, I bet you were mad! Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Meg, Poor Maureen; all those colonoscopies! Poor you; trying to be Mommy thru it all! The doctor sounds like one to avoid. Did he ever find out that Maureen DID have CF? And you didn't ramble, it was very interesting, as are all the stories of diagnosis that I have heard on here. Have you decorated the nursery yet? (RAchel and Sami's Mom) Re: Reply to Meg > > Maureen has always had slight respiratory difficulty but nothing that would > have sent up any flags. When she was 5yrs old the digestive problems really > came on strong she was so impacted but no one knew why. We saw one Gastro in > Westchester and he could not figure anything out. He thought she had Celiac > then those test were negative and then we did 4 to 5 colonscopes all showing > nothing due to impaction. On the last one they admitted her and cleaned her > out themselves but no luck she was still impacted and nobody could tell us > why. There was a girl in the bed next to her with CF and her mother really > tried to impress upon me how many similar things they had. All the Interns > kept asking if she was there for a sweat test too because they noticed > such clubbing in her fingers and toes. When I asked for one her Gastro said > I was crazy she did not present at all. We waited for the results of the > colon scope which ended up showing Crohn's This did not explain the > impaction. I asked for a cat scan of her ab to see how impacted she was he > told me he did not want to put radiation in her but maybe we would do another > scope at this point I had enough. He had all the results of Crohn's and > would not diagnosis her with it because he claimed she did not have it yet > the medication for it (asacol an anti-inflammatory) seemed to be helping a > little. He had her on a high fiber diet which was killing her. So we left > for NYC and found a new doctor. He took one look at her and did a blood test > for Crohn's then took all her biopsies to his pathologist and ordered a CT .. > That's when I knew I was with the right guy. In less then a week later he > ordered a sweat test. In less than a month we had both diagnosis and she > started feeling better she went from the 10 percentile to now she's in the > 40's. Once I got the diagnosis I can't say I was devastated because for me > it was more relief Finally we knew what we were dealing with. 8yrs of having > a kid that was always sick and always had stinky BM's no matter what she ate > or didn't eat and all her periodic respiratory problems made sense. At one > point I thought I must be really overeacting and putting more on this than it > is. But then she would be in so much belly pain or back into asthma problems > or coughing for 90 days straight. I was really lucky I was so crazy they > told me I was the one who kept her so healthy! That was better that I was > crazy to ever think she had CF. It was tough getting through all of this and > I did see that I am a strong person because of it. But it also makes me > realize that if this baby has CF it will never be what we went through with > Moe We will know in months instead of years. > > Sorry I rambled! > Meg > > ------------------------------------------------------------------------ > 0% Introductory APR! > Instant Approval! > Aria Visa - get yours today. > http://click./1/7102/8/_/480698/_/964204404/ > ------------------------------------------------------------------------ > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2000 Report Share Posted October 10, 2000 Hi Meg, I've been thinking about you every day, wondering how you are doing. In fact, on the radio the other day they said that October 5 is the most common birthday in the entire year, so I wondered if you'd contribute! Anyway, you asked about 's skipping meds. Amazingly enough, is doing much better right now. I hold my breath, as I fear we have not seen the last of this issue though. She is definitely growing up. Her first school dance is this Friday (Oct 13), and she is quite worried over what to wear. Where did my baby go???? Keep in touch and BEST WISHES!! Re: 's Medical Appointment > > Sorry I am so far behind but I am thrilled to hear about 's last > visit!!! I love to hear about because Maureen is not so far behind! > I was thinking of you the other day Maureen is skippping meds. The teacher > even called about it. I know you had problems with this last year have they > gotten any better? > > Meg > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.