Intro & questions????

[anonymous]

Hello every body, I'm Sherry(25) mother of Haliyah (2) and Briceton (8wks w/cf). These past two months have been really scary for my family and me, Briceton was born on July 20th; 5 days later I was hospitalized for high BP and two day later I suffered a stroke. I was hospitalized for the next 9 days in CCU.

As if that wasn't enough, on the last day before I was to be discharged my husband had just came back from our son's two week check-up with the news that Briceton had tested high for CF and that he was taking him to Vanderbilt in Nashville the very next day.

Well the blood results came back positive and my son was confirmed with the diagnosis of having CF, double DF508. I of course have cried and frequently have my moments but I honestly try not to dwell on the fact that he has CF. Nothing I can do about that part. But damn it I will take the best care of him, be strong for him, be extremely active in his care, and see to it that he and my daughter have the best lives possible.

I still have a lot to learn about this disease but have become very active in such a short time in the CF community here in my hometown.

I do have a few questions if you all don't mind giving me some insight. We take my son back to the CF clinic tommorow as they see him monthly right now due to lack of weight gain. He is only on enzymes at this point. Is there anything this early in the fight that I should request him being on that will help in the long run? Do they usually only start treatments when a problem arises? And are there ANY questions that you guys think I should ask tommorow? I already have a list myself, but do not want to leave anything out. This is all still so new to me and I'm afraid I'm not asking the right questions.

If you don't mind p, lease respond soon as we are leaving today. Although, I should be able to get a connection from the hotel tonight so I can check the boards.

Oh and by the way, my daughter is being tested tomorrow. Please pray, I really do not think I can handle any more heartache at his point!

Hoping to get to know you all and have a great day!

Sherry

 

[JazzysMom]

This is a bit tricky to answer because a lot depends on the doctor. Some like to wait & treat the problems as they come & some like to be pro active & try to keep them from ever starting or at least slowing it down. Weight seems to be the immediate concern. I dont know how early different things are started with babies as I was dx at 7 & that was 30 years ago. A few things in addition to the enzymes that could have a difference in weight gain are antacids to help the enzymes work better & cut down on acid reflux &/or simple belly pains. Another is allergies/sinuses issues that might drain into the lungs &/or belly causing small, but continuous problems. Its not to say that it is going on, but these are ideas. CHest physicaly therapy & nebs are usually standard practice as maintenance/preventative even when lungs arent involved too much. Again this does vary from CFer to CFer as welll as doctors. Another thought is ADEK or ABDEK vitamins which are specially designed for those vitamins which are difficult for most CFers to absorb so they need supplements. Writing things down now & continously is very important. Constipation/intestinal blockage can be a concern especially with little ones that cant express any pain. Just something to keep an eye on! Keep us updated & welcome to the site! There isnt too much that you can ask about that cant be answered here!

 

[anonymous]

Thanks for the response! I did forget to mention in my previous post that he is also on ADEK vitamins as well. We are also on Pregistimil formula, for babies with fat malabsorption problems. Luckily we got insurance to pay for that as it cost 120.00 a case and he drinks 6+ oz a feeding. That is 4+cases a month! Little Oinker at 8wks! Before ins. decided to pay I was actually looking around the house for items to pawn, LOL. Breast milk was his main source of food up until my stroke as I am now on several different BP meds.

He is also going to be having an upper GI tomorrow as well. He has been having bloody/mucous in his stools for the last several weeks. Although, I'm not sure if that is CF related.

Please keep the responses coming, don't think I could ever learn too much about this disease.

Thanks,

Sherry

 

[anonymous]

Hi Sherry - I feel your pain. I have a 12 year old daughter-no cf and a 9 year old little boy who was diagnosed at 6 mos. due to low weight gain and respitory problems at the time. He has only been hospitalized at 8weeks and 6 months old so far - so we've been lucky. When he was diagnosed they started enzymes and then later some zantac due to reflex (only til he was 1 or so) now no reflex. Some constipation the 1st year- now no problems usually. My son has had 3 nasal polyp surgeries and some digestive problems- some blockage this last year. (I think due to teacher not letting him go when needed - fixed that fast!!!) He goes for a sinus ct scan today to see if we need to do another surgery. We have done albuteral neb treatments and cpt everyday since diagnosed. We just got the vest this last 6 months - which is nice. My son has been pretty healthy - plays sports, ride bikes, swims - just a normal active and funny boy. Love him to death!! I'm not saying that the future doesn't scare the heck out of me - but I guess we just live day to day and so far we just do his breathing treatments and vest once or twice a day. He hasn't had many lung problems yet - as soon as gets cold etc - we start an antibiotic. that seems to help!! He takes 2 multi vitamins, enzymes and a vit E daily. He does get down about it once in a while - but I just remind him that things could be worse and talk about it. I wish you the best of luck there is so many different severities and everyone is different. Hope the best for your daughter too - I'm thankful that it wasn't my first kid - they love each other so much!!

Mother of 9 yr old boy wcf

 

[Mommafirst]

Hi Sherry,<br>
<br>
I'm so sorry for all you have been going through.  The early
days with a newborn and having your own health issues are hard
enough, but adding all the stress of CF on top is a lot to deal
with.<br>
<br>
I'm new here too, my 7 month old daughter was diagnosed in early
July.  You are sooo smart to ask here to get questions for
your clinic.  I was so overwhelmed for our first visit that I
hadn't prepared at all.  The good thing has been that our CF
nurse has been available and willing to answer all my questions as
they have continued to come up.<br>
<br>
My daughter is not on enzymes or adek because she is pancreatic
sufficient.  So they didn't put her on anything.  I'm
hoping to meet with the physical therapist this week to start chest
PT -- as a preventative practice.<br>
<br>
I wish I could give you more questions to ask, but I'm still pretty
stuck myself.  I just wanted to offer you some support.
 And wish that your daughter comes up without CF.  My
boys were recently tested.  We received a carrier result for
the younger and am still waiting on the older.  It is a very
stressful time.<br>
<br>
Good luck at clinic,<br>
Heather<br>
mommy to Alyssa (7 months with CF),<br>
Reese (almost 3 years, CF carrier) &<br>
Richie (5 years, CF testing still waiting)

 

[anonymous]

My son was diagnosed at 2 and 1/2 weeks with CF from the newborn screen. This was in April. My daughter that is 7 and 1/2 was diagnosed in June after having sweat testing because of my son's diagnosis.

The first couple of months are terrible. Full of heartache and upset. Just pull through the best you can and it does get better.

My kids are doing great. Zeke is pancreatic insufficient and on ezymes. He is also on Xopenex, PUlmocort and pulmozyme. Katie is on Pulmozyme she is pancreatic sufficient.

We are very positive people and are going to try to stay that way. Katie has never been sick and is just now diagnosed. Zeke has some respiratory issues but they are mild. He is 4 months now and doing great. He is 13 pounds and 9 oz on Monday.

Take care and good luck,

Christy

Emma age 10 no cf, Katie 7 and 1/2 wcf, Zeke 4 months with CF.

 

[anonymous]

Sherry, I just wanted to tell you that I think you are doing a great job. My heart goes out to you and your family and I wish you the best at the appointment tomorrow. Since it was such a long time ago since I was an infant, the care I received is irrelevent. I will tell you a question I always ask of a new CF doctor. I tell them that I will always come prepared with a list of questions (still have them... after 27 years) would he/she like me to email them in advance of the appt? This is a more successsful route than just asking for the doc's email address outright. Then I also ask for phone numbers. Who to call after hours, who to call if the first person isn't responding, etc. Putting myself in your shoes, I would want to know what will the protocol be when baby gets sinus infection for first time? lung infection? I like to know what's coming...keeps me feeling in control and I would imagine same for you and will keep your blood pressure down.

LouLou (not logged in)
-------------------------
Lauren 27 / f / w cf (pa, pa-mucoidal, aspergillus)

 

[norcotrent]

Sherry,

I certainly do not have all the right questions or answers. There are many wonderfully intelligent and insightful people on this board that can and will
help you more than I. I just wanted to tell you that your family will be in our families prayers this evening.

God Bless,

Trent

 

[folione]

My son w/ CF is 3 now. One bit of advice to pass along is to always ask at the clinic and pediatrician offices for any samples they have of anything you need. We got all the formula, nebulizers cups/hoses, pedialyte, vitamins, etc. for over 2 years that way and still get nebulizers and vitamins whenever we need them. Also, if your child is using creon enzymes, make sure the Dr. signs you up for the "wee care" program via CF Services pharmacy - it gives you enzymes and vitamins free for 2 years and be aware that they don't seem to fuss about how many enzymes you order so we ordered an extra 3 or 4 months worth when we got close to the end of the 2nd year.

 

[scarbrough]

Hey Sherry,

I am so glad to see you on this site..You have met my mom, Sharon, @ the cf committee meetings..she said you may call..I recognized your son's name...please call or email me..sassytennessee@hotmail.com...Hannah is 17 mos now so I can share alot of things that I just learned..hope to hear from you soon!

 

[anonymous]

Well, I do believe I got most of all my questions answered at the last clinic visit. It seems though, no matter how organized I am, I always think of something I should or wanted to ask as soon as we leave lol! I have a notebook that I write EVERYTHING down in that happens at the visits or questions I want to ask-still not 100% liable. Just seems like so much right now.

Briceton is also having problems that are not CF related. His GI specialist changed his formula to ElaCare due to the problems he was still having with the blood/mucus stools. The Pregestimil just didn't seem to help at all, so they are treating him for severe milk allergies at this point. So far NO blood since the change!!!!! Also, he is vomiting ounces and ounces of formula a couple times a week. Comes out both his nose and mouth and blocks his breathing. This also happens regularly during the day when burping. Sometimes it just comes out the nose or both nose and mouth. They had us come in Friday for an ultrasound but was negative. He is on AXD and Metoclopramide but nothing seems to help. He is gaining weight now though, almost 2 pounds in a week, YAY! With everything else going on, his little butt and scrotum are so horrible looking right now. They have open bleeding sores all over and he is in SO much pain. They said it was due to the Augmentin (antibiotic) he was on. We have been prescribed ointments and it just won't clear up. Just kills me to see him hurt so bad!!!! I was in tears just from all this Friday, can't imagine what it's going to be like the first time he gets really sick.

Well I just wanted to update you all and thanks again for all the great input. These forums have given me great insight into this disease.

Oh and by the way, my daughter tested negative for CF. YAY! YAY!

Sherry


Scarbrough, I guess the CF community is a small (but rising) world. Its funny, I just asked your mom at the last meeting if you got online much. I'll drop you an email soon, can't wait to meet you and your little Hannah at the walk next month. She is a cutie, your mom showed her pictures off last week!

 

[anonymous]

Our son diagnosed at 8 days old with CF also had terrible bouts of diarrhea that gave him horrible diaper rash when on antibiotics. We use an over the counter cream called Triple Paste which works wonders. You could try that- we layer it on him at every diaper change. By the way he is almost two now and is incredibly healthy and happy. The joy of our lives and CF gets a little easier each day!

Megan

 

[anonymous]

Our son was diagnosed much later but had all the symptoms as everybody has posted. Misdiagnosed when he was 1 month in the hospital. But moved past all the bad times before he was two. Boy the spitting up the formula and the diahrea just reminds me of what you are feeling. Been there done that and you will survive. But I have a great product that will help with the sores on the bottom from diarhea now you may be going no way would I use this but it works great "Corona" Ointmet you can find it a Walmart or Walgreens or any pharmacy. It is for horses, cattle and small animals but my son had the worst sores on his bottom because of the diahrea and the peditrician recommended it and man did this stuff work. There is no smell or mess it really is awesome. It also works great for heat rashes.

 

[anonymous]

Well, the rash is now getting better! But that is the least of our worries now.

Briceton had to be air lifted to Vanderbilt (his CF clinic is here as well) on Sunday due to pneumonia and deflation in the top of his right lung. He is on a couple antibiotics through IV and seems to be doing a lot better today. We will hopefully know more tomorrow as the new cultures will be in and they are going to do another chest x-ray.

I was really hoping this first hospital stay was going to be a LOT further down the road!

Please say a pray for us!

Sherry

Briceton 9 weeks (CF)
Haliyah 2 years (w/out CF)

 

[DEES4]

Oh Sherry bless your heart (and Briceton too)!! I know this is so scary....we have also been through some tough hospital stays. My son got a virus (had to be viral because tons of cultures came back clean) when he was 11 months old. He got so sick he had to be on a ventilator for 10 days. Then when he was 22 months he had to go by ambulance because his blood sugar dropped and we couldn't get him to wake up (that stay was only a few days but never got a good explanation as to why this happened....although they did mention dehydration and he does not have diabetes). Anyway I feel so much for you....I will keep you and your baby in my prayers....by the way my son is now doing great and he will be 3 in December. I hope Briceton gets to come home soon!! Please keep us updated when you can.
Carrie
Mom to
Daniel (no cf)
Emily (no cf)
Ethan (no cf)
Sawyer (cf)

 

[anonymous]

Thanks Carrie, this has all been a lot harder than I could ever imagine. I am so sick of them sticking him! He is on his third IV today as the others have gone bad and they haven't been able to draw blood from any of the IV's and at one point resorted to taking the blood out of a vein in his little head, OUCH! He has been stuck all over and all veins seem to blow. They are putting in a pic (sp?) line tomorrow as we should be able to take him home hopefully on Friday or Saturday. The chest x-ray came back and looks a little better then the one from Sunday but we are still waiting on the sputum and blood cultures. The blood cultures from our hospital at home showed some kind of growth so that is why they are retesting.

Thanks for listening to me vent a little. I just don't think I was emotionally prepared for this to be happening so soon. But then again, are you ever?????

Need Prayers!

Sherry

Briceton- 9wks (CF)
Haliyah 2yrs (w/out CF)

 

[DEES4]

Sherry,
How hard it is to watch our babies be poked and stuck. When Sawyer was in the hospital I got to the point that everytime they wanted to do something I would get mad at them....I know they were just trying to help but I really couldn't help it. I forgot to mention that Sawyer was also in the hospital for the first two months of his life...due to meconim ileus and several surgeries. The time he was in at 11 months and on the vent he had ivs in every part of his body. One in his head, one in each foot, and one each hand. He had a central line in his groin and also had a catheter. It was absolutlely HORRIBLE. Kids are amazing though....it seemed like then as quick as he got sick he got well!! I know those picc lines are tough too.....he had one in his arm for about his first 8 weeks of life. I never had to bring him home though with any ivs or picc lines. But there are plenty of people on the boards who have. I just want you to know that things will get better...I think Sawyers fist year was the hardest. I was once at a place that I wondered if anything would ever seem good again...and it does. Just know you are not alone....lots of prayers going up for you and Briceton (and big sister because I know its hard on the siblings too!)
God Bless,
Carrie

 

[LisaV]

Sherry,
I am so sorry that you and Briceton are going thru this with him at such an early age.
I have not had exactly the same experience, but when my daughter was born a preemie she had hyline (sp&gt<img src="i/expressions/face-icon-small-wink.gif" border="0"> membrane disorder and she had to be in preemie intensive care and on what I called "the green machine" which really was a sort of cpap machine for babies. It was just so so hard. (But in some ways easier when she was kicking and crying becauise at least then I knew she had some fight in her.) I was so relieved when they took her off of everything that I cried so hard I couldn't hold her.

Anyway I hope Briceton gets better soon and gets to come home soon.

I will hold him and you in my heart

 

[scarbrough]

Sherry

I just wanted you to know that I've put you & your family on prayers lists with everyone we know & they are passing it to people they know. I am so sorry that Briceton has been having such a hard time! It is the hardest thing seeing your baby with all those tubes and cords attached..I was so scared I would hurt Hannah when I'd pick her up...they are so innocent & it's so hard to see them go through such horrible things..you are in mine & my mom's thoughts and prayers everyday..my dad even got emotional after the El Chico's fundraiser..Hannah being "sick" has really softened him up..he still can barely talk about Hannah w/o getting emotional..even if it has nothing to do with cf..just remember to keep him in as much as possible when you get home...use hand sanitizer all the time..especially Haliyah..Flu season is coming up...take extra precautions..get flu shots for everyone..don't keep him in a bubble but do what you have to do...I kept Hannah in most of the winter epecially after she was first born...we would go over families houses but they knew what was expected...sanitizer, no smoking(never), no one sick..etc. I've talked with mothers down here that have healthy children our age and they were very particular...all cfers are different & fight things differently...but do your best now..it will eventually become routine...Hope to see you all at the walk...also there is nothing wrong with you being very cautious @ the walk...most people know not to get up in yours or Briceton's face..but there are some who still seem to forget...it may be best if he stays home but just talk to the doc's..they'll tell you what's best..I still call them anytime I have a question...Have a safe trip home this weekend...I know your lacking on sleep...please email me when your back home!

 

[anonymous]

Thanks so much you guys for all the prayers and words of encouragement. Well, the picc didn't go as planned today. They tried three different times and were unsuccessful. We are going to try again tomorrow, but they said his veins were pretty hard. Got one to go half way through and just stopped. So hopefully (fingers and toes crossed) that it will be successful and we can take him home hopefully on Saturday. They did let me know though, that if it is unsuccessful tomorrow that we will have to finish the remainder of the 14 days her at the children's hospital.

As far as the cultures, they tested positive for staph. Not a big surprise since he has always cultured staph since his first clinic appt. at 4 weeks. Doc said the tobi and cefepine will take care of that as well.

Did I mention that the x-ray from yesterday looks better then the one from Sunday? Still shows some deflation but looks better! That's good news!!!!!!!!! That scared me to death.

Again thank you so much for your thoughts and prayers, means so much to me that there are people out there who understand all that's going on right now. CF world is a scary place.

Sherry




<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>scarbrough</b></i>

please email me when your back home!</end quote></div>

I sure well, and I heard the ElChico dinner brought in over 129 people. They had NO problem getting those 100 people after all!