Just Need To Vent

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ErinsMommy

New member
Hey Everybody...
The past couple of days with Erin have been extremely rough!! She is crying more often than not and it's not just crying she is SCREAMING. She really seems like she's in pain. She coughs so bad that she'll make herself choke and then she cries more because I'm sure THAT makes her throat hurt. It's the most painful thing in the world for me to see her like this. The CF Clinic says that she probably just has cramps and to just give her the recommended dose of tylenol every 4-6 hours which is what I've been doing but it just doesn't seem to be enough. The past couple of nights have been completely sleep less because she just keeps waking up in pain and STARRRRVING!! To top it off.... the poor thing has a HORRIBLE diaper rash which she just got perscribed medication for. (That seems to be helping) I don't know what to do! I can't wait till Erin gets to the age where she can tell me exactly what's wrong for her and what I can do to help!! It's so frusterating to see her like this and talk to her and say "Hunny, where does it hurt? PLEASE, just tell me where it hurts!!" and have her not answer me back. All she does is mamamamamamama mamamamamama while she's crying so it's almost like she's crying out for my help and there's NOTHING i can do! Which then makes ME feel like a horrible mother! I'm so sad!!

On another note... I wish so badly that her father wasn't such a scumbag!! I would love SO much to have his help through this. Even if it meant we were not necessarily "together" Even if it meant that when she got like that during the day, I could drop her off for an hour or so just to give myself a little break. Just to breathe... to have some time without hearing her screaming like she does. Even if it meant he came over to my house... civily, and helped me with her. It's just not fair that I thought I had my whole life planned out and it turns out, I'm doing it alone. I can't even say I'm doing it alone. My mother and my brother's help me so much!! But like I said... It's just frusterating. I had a family. It was mommy, daddy, and erin and he bailed because of her cystic fibrosis. Yes... cystic fibrosis is extremely hard to deal with but the way I look at it, is cystic fibrosis is just one more thing to love and adore about Erin. It's just one more obstical to work with. Not to over-come obviously, but to work with. And to work for fighting it.

Erin doesn't have an extremely bad case of CF at all *knock on wood* For the most part she's doing really well. She just got off her Tobi three days ago and she has another throat culture on the 29th to determine whether or not it worked... I am extremely confident that it did! It's just been the past couple of days. I feel like I don't really have anybody to talk to except my mom. Which of course it's great that I have her... but I feel like I make her really sad when I talk about it. When I tell her that lately, every day, as much as people tell me NOT to do this... NOT to think like this I can't help but wonder how long i have with my daughter. I know that's no way to live or to think... but I can't help it... It definitely crosses my mind. Then my brother's don't fully understand so I can't talk to them... and sometimes I feel like my friends are all idiots and I can't talk to them... I don't know... It's just rough. I guess I'm gonna try to go to bed now... I'm sure she'll have me up again in a couple of hours lol...

Thank you for listening!
Goodnight!!
 
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65rosessamurai

Guest
Whoa!! Open a window, that venting was severe!!
Honestly, If Erin's screaming has anything to do with stomach aches, and/or intestinal (Most pain is in the lower part of the abdomen), can I suggest a heating pad, or something warm for her tummy? (maybe lay her flat on it, or on her back--forgot which is most comfortable, but for me, it was the stomache, giving some pressure to help move things around.)
I recal an umpteen number of stomache aches, and sometimes the heat helped relax the stomache to allow that stuff to "move on through!"

Also, technically speaking, if it IS gas, then the fact that when gas is pressurized, it will expand, if it's trapped, due to the "valve" being stronger than the force, it'll just increase in pressure. I think this is where the pain originates, the gas being compressed in the intestines, and not having anywhere else to go.

sorry to hear your marital problems are also related to CF. I couldn't imagine if my dad did that, but I don't know how much he avoided my situations. On the contrary, he worked hard at his job, so us children had enough to eat. If there's any hope your husband can return, I hope it's possible for you and your daughter's sake.

I hope this has been helpful, or at least to let you know, someone heard you!
(P.S. was just about to log out, when I saw your post)
 
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LoveShines4Austin

New member
Have you tried symethicone (simethicone)? It is for gas and they make it in infant drops so you can just use the dropper to squeeze some into the side of her mouth and she should swallow it right down. They have it at every store near the other gas aide products. Raquel used to get like that and she doesn't even have CF. There is a chance that it is not CF related, right? All I know is that I have no idea how I would have made it without the drops! I hope this helps and I wish you all the best. I know what it's like to be a single mother with a small child...doing it all alone.

<a target=new class=ftalternatingbarlinklarge href="http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682683.html
">http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682683.html
</a>
Hang in there!
 
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anonymous

New member
I thought I'ld post to offer the support I can. I'm not sure how old your daughter is but I thought I'ld add my two cents. My son(who is now 7 and does NOT have CF) was a tough infant. He would cry and scream all the time unless I was holding him and nursing him. It was hard! He is now an amazing kid. My daughter(who is almost 3 with CF) was the easiest infant, even though she had 2 surgeries by the time she was 6 months old. That being said sometimes babies just have bad days/nights which makes YOU have a bad day unfortunately. Could your daughter be going through some sort of growth spurt? Remember your daughter does have CF but she also goes through the same things any other infant goes through. I know diaper rashes would makes my children very unhappy too.

Is it possible you could have someone watch your daughter while you have an hour or two to yourself to take a nap or have time to yourself. You need to get some time to do what you need to do and you'll be better able to take care of your daughter.

Being a mom is draining for anyone nevermind all the things we do to keep our children with CF healthy. YOu sound,like a great mom. Hopefully things will settle down for your daughter and you ,too

Rebecca(mom to sammy 7 no CF and Maggie almost 3 with CF)
 
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anonymous

New member
Hi - Sorry things are not going well. When you say she is coughing and in turn choking - is that from the crying or is that part of what is wrong right now. Is she congested? Is she drawing her legs up like it is cramps or gas? Is her belly more distended than usual? How are her poops? If it is cramps/gas/intestinal stuff - her are some suggestions that worked for us. We though Jason had colic when it was really cf not diagnosed. But these things offered some rest for the frustrated and weary at the time: vibrating bouncy seat, baby swing with a heating pad on their belly, chamomile tea, the usual bending their legs like they are riding a bike, and we brought our stroller in the house and would do laps. Distractions were really helpful too - going for walks inside or out. White noise or music helped for very short periods of time. Best wishes and I hope she feels better sooner than later! Jo Ann
 
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anonymous

New member
Hello,

We had alot of issues with Bennett when he was younger (and more recently) with gas pains/cramps/constipation. As the previous posted asked how are her stools? We are sure Bennett was "backed up" even thought something was coming out. He was in horrible pain and ended up throwing up as a result. The CF clinic put him on daily glycolax and miralax as needed. I really think that has helped relieve some of his cramping. I also give him prunes if I don't like the look of his stool or if his stomach is tight or a bottle with half prune juice/water/grape juice (grape juice hides the taste of the prune juice). It is so hard to see them like this and feel totally helpless but I hope in time Erin will get thought this rough spot. You have every right to be upset about Erin's dad but try to hang in there! I have to say for us it has gotten more managable with time. I hope it will for you also.

Paula
Bennett 15 mo w/CF - Jameson 5 no cf.
 
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anonymous

New member
I forgot to ask how old Erin is. When Austin was just under a year old, he was eating ALL the time and acting like he was starving. He would projectile vomit and was obviously in extreme pain. I ended up taking him to the ER and they did x-rays that proved that he had an intussusception. His small intestine had parascoped back into his large intestine. They did a barium enema and that did the trick. I hope she is feeling better and I hope you have had a chance to get a break and get some rest.
 
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SeasonsOfLove

Guest
Colleen went through a very long phase of colic - if that's what it was - it finally abated when she was put on a drug called Reglan. Just a thought.

Another thing that occurred to me while reading your post was that the enzyme dosage may be too low? It might be hunger cries?

Hope things improve for you both soon!
 
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SeasonsOfLove

Guest
Colleen went through a very long phase of colic - if that's what it was - it finally abated when she was put on a drug called Reglan. Just a thought.

Another thing that occurred to me while reading your post was that the enzyme dosage may be too low? It might be hunger cries?

Hope things improve for you both soon!
 
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ErinsMommy

New member
Thank you guys all so much for your care and concern!! Its been a couple days erin had a pretty good day yesterday and she had an awesome day today!! So i think she's feeling much better!

There is a possibility that what was going on could have been gas or cramps becaue she did scrunch her legs up like was mentioned and she did it quite a bit. And yes her belly was really hard. But I called her doctor and she said to just give her the recommended dose of tylenol as needed and to watch and make sure it wasn't getting any worse. And she has an appointment next Tuesday so they're going to check her out.

For those who asked how old she is... she's 5 months. Is it really safe to give a five month old a heating pad and prune juice. Because next time she gets gassy like that... I'd like to try some of the things that you all recommended to me. ANYTHING to make my little girl feel better..

Again... thank you all so much for your care and your concern. It means a LOT when you don't feel like you really have anybody to talk to about this. I appreciate it!!

-Lindsay
 
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lovemygirl

New member
Things do get better, although that is easy for me to say because I had my husband by my side to support me. I have heard of spouses leaving because a child has CF and don't understand it. There is not much I can say to help in that respect, but this will definitely help for the diaper rash...and lessen the screaming during diaper changes. I found this on another CF site and it really helped our daughter when she had diaper rash caused by the enzymes...which by the way will disappear once her system adjusts to the meds.
Baby Wipe Recipe
First, you'll need some sort of covered container, approximately 6 inches deep, and 6 inches or so in diameter. A 10 cup Rubbermaid canister is the perfect size. Then, you cut a roll of Bounty (no other kind works) paper towels (big roll) in half, so that you end up with two smaller rolls. Remove the cardboard tube. Put one aside to save for later. Put about 3 cups of water in the container, 1 teaspoon of baby bath or baby shampoo, and about 2 teaspoons of baby oil into the water. You can put more or less to your liking. Swish it around a bit to mix it, then just stick one of the halves into the container and cover. The water will all eventually soak into the paper towels. Pull the wipes from the center of the roll. If you are not using a big roll, but a standard roll instead, then cut the water down to about 2 to 2 1/4 cups. To make my wipes portable, I tear a bunch of them out and stick them in a Ziplock type of bag.

Not only does these ease the pain of your childs bottom but it saves a lot of money. Many of my friends with healthy kids also do this just to save money. The reason it doesn't hurt the rash is because there is no alcohol like in the store bought wipes.
 
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Haileysmommy

New member
We were having some problems with Hailey last month. They upped her enzymes and put her on Miralax. That helped her a ton. She is in a much better mood and her tummy isin't so bloated and hard.
She also had a nasty diaper rash. It was a yeast infection from the antibiotics. The cream cleared it up right away.
 
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Emily65Roses

New member
No idea on how to help her... not a mother, never been there. But if you're ever just frustrated and want to talk to (or yell at or cry on) someone who will have a clue at what you're talking about, feel free to stalk me. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<img src="i/expressions/heart.gif" border="0">
 
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Caleblove0802

New member
Hi Erins Mommy!!

Just wanted to say "Dido" to what HaileysMommy wrote. My son is almost 4 mos of age and what you initially explained brought me back to the last 8 weeks w/my son (Caleb). He was the EXACT same way!!! The clinic bumped up his dosage of enzymes and put him on miralax. He takes miralax about every other day but sometimes daily. IT HELPS!!! And once the enzyme dosage was increased Caleb now sleeps from about 10:30pm-7:00am. As for before, he would sleep midnight to 2 or 3 am and then wake up again at 6am. IT WAS SO HARD! And he would do the really sad crying you were explaining. I have mentioned countless times that I cannot wait until he can speak and tell me what is hurting or when he just feels a little off that day. And again, Caleb was hospitalized in October for 19 days and also had a diaper rash but he was given Nystatin cream and it cleared up right away. You know...maybe...see if the clinic will do a chest xray just to sooth you and know that your daughter is okay in the lung area. By no means whatsoever do I want to scare you. However, when Caleb was having his hardest time with sleeping and screaming I had mentioned to my husband that I would just feel better if the clinic would do a chest xray...just so I knew everything was okay. Four days later we had clinic and the nurse and doctor had us do a chest xray before I could ask for one...Caleb had a parially collapsed upper lobe to his right lung. I am a first time mom...who hasn't been around many babies...let alone one with cf. I just about lost it when I realized how much he was trying to let me know that he did not feel good. Like I said I do not want to scare you but listen to your GUT!!! A mother's intuition is usually right almost all of the time. I had to learn the lesson the very hard way!

Blessings!
Melissa
1 son 3 1/2 mos w/cf
 
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