feeling like I'm on an alien planet ;)

[heidikk]

I'm new to these forums and glad to find them. In December, we had a beautiful baby boy who was apparently perfectly healthy. You can probably imagine (or know personally) my surprise when our doctor called about a week later to say that the heel stick had come back positive for cystic fibrosis. The crazy part that shocked all of the doctors and specialists was that Kory is our eleventh child (10th living) and up til now we had no idea that we were both delta f-508 carriers. (In retrospect, our full term stillbirth may have been cf related, but we didn't have testing done to find out the cause at the time.) Thankfully, our son is doing very well. He is pancreatic insufficient so he takes enzymes and we do the chest pt on him twice a day, but he has no lung symptoms at this time and has even managed to not catch any of the little colds his siblings have had or even the full blown influenza that laid out the entire family, except him, praise the Lord! It makes his diagnosis a bit surreal sometimes to be honest. I'm finding that the hardest part for me is that all I've learned from mothering nine other children gets turned on its head with Kory. I've nursed all my little ones exclusively, delayed solids until 8 - 9 months, declined vaccinations, avoided well baby checks at germy doctors offices LOL, found that avoiding cow's milk including cow's milk based formula helped my children's bed wetting and eczema and completely stopped the ear infections that my first two kept getting, and kind of tried to stay off the radar so to speak. Now I'm told that my milk isn't enough and strongly encouraged to supplement with formula. We are pushed to vaccinate (we did choose to do some of them for Kory's sake), he's supposed to start cereal now and then MEAT!?!? at 5 months old, seeing the doctor every single month plus the regular well baby checks with our family doctor, constantly fussed at about his size which is small but not what I would think would be panicking small, especially considering his non-cf siblings all run about the nineteenth percentile on those charts. And I find that my biggest fear is that all these medical people who are now such a big part of our lives could decide I'm "doing it wrong" or not good enough and we could be one of those families who gets their children taking away. I know intellectually that I'm being silly, but I still go into a major panic attack the day before every one of his appointments. Anyone else here trying to balance a deep distrust of allopathic medicine and having a cf child? Anyone choose to not do *everything* *exactly* as recommended along the way? - Heidi mom to Dekorrah, 5mo son with D-f508 cf

 

[Rebjane]

I tried to reply to you but my response didn't post, so here goes again!

I am so sorry your baby has CF. Cystic Fibrosis treatment has changed over the years due to all the wonderful CF doctors and researchers and us families advocating for our loved ones.. The goal is to keep your baby's lungs healthy for as long as possible to take advantage of all the new treatments available. The Cystic Fibrosis Foundation has resources and info for newly diagnosed families. Their website is www.cff.org. There you can find a CF center in your local area. Going to an accedidated CF center with a CF doctor you trust is very important. You will become your child's best advocate. You have a wealth of experience raising children. A CF diagnosis is like a slap in the face. Your life will change; you will have a new normal. How old are your other children? Can they help you?

I breastfed my CF daughter; we weaned completely when she was 3 1/2 years old. It can be done. Any advice or info I'ld be happy to provide.

Every CF kid is different. Some things we do, we've adjusted on our own; with our CF doctors approval. Alternative medicine or herbal medicine can certainly interact with other medications so I would always keep your CF doc in the loop. We use fish oil and probiotics. Exersize, just bought a trampoline. But my daughter is on a ton of meds; breathing treatments, VEST, etc. She still gets sick... It's the nature of the beast.

On a side note; Vaccinations(I know a touchy subject) is so important. Pertussis(whooping cough) the flu among all the other preventable illnesses; are illnesses that can cause irreversible lung damage or death in a CF'er. I can not imagine not vaccinating my children, CF or not. It really is a public health issue.

Keep asking questions. Someone here has been there and done that.

 

[triples15]

Welcome Heidi I'm sorry your little one has CF, but glad you have found this website. You will find a lot of support and info here.

Wow, this is a loaded post. My perspective will be a little different because I am the one cystic fibrosis. My daughter (18 months) does not have CF. However, I do share some similarities with you. I cut out cow's milk when my daughter was 2 1/2 months old and noticed a big difference. I exclusively breastfed until 6-7 months and then slowly did some fruits/veggies/rice cereal. She didn't really start eating much until 9 months. That said, I can certainly understand/respect your apprehension to supplement and start solids (especially meat). Is the recommendation to start supplementing and meat coming from your ped or your CF specialist? If it is coming from the ped, I would defer to the cf specialist and dietician. I guess I'm not sure how starting meats so early is going to help him gain, and meat is typically harder to digest. Hmmm.... I might take some heat for this, but I would use your mom instinct on that one. My mom breastfed me exclusively until at least 6 months and at the time doctors told her it was the best thing she could do for me. I breastfed until 3 + years and my mom swears that helped keep me healthy.

Regarding the supplementing.....if you HAVE to supplement, there are options without the cow's milk protein (or predigested). I never used it, but had a can of Alimentum onhand, just in case something would happen and I would be unable to feed her. So, while you don't want to supplement, at least there ARE option available. As far as the growth charts, if he is where your other children typically were, then I would not worry a ton. If he starts sliding down, I would try the supplementing. Mind you, I have NO medical experience, I'm just speaking as a mom.

I'm sorry the appointments are so stressful for you. I'm sure this is beyond hard, especially with your distrust of Western medicine. You are somewhat right to be concerned, as there are people that have had there CF children removed for not providing treatment. You will have to learn to balance homeopathic/holistic/natural alternatives with a dose of Western medicine. I think there is a definitely a place for alternative medicine, but with cystic fibrosis, there is no choice but to use modern medicine. These meds will keep Dekorrah's lungs as healthy as possible, for as long as possible. In my opinion, CF is a disease that will be well-controlled(not necessarily cured) in the next 10 years or so. It is SO important to keep Dekorrah as healthy as possible so he has less lung damage when these new treatments are available. There are meds in the pipeline now to treat DDF508, and if they make it through trials could be available in the next couple years.

As far as the distrust, I have somewhat of a distrust of doctors when it comes to my daughter as well. I also was very nervous about vaccines. Ultimately I decided the positives definitely outweigh the negatives and went ahead with them. As Rebjane mentioned, it is also a public health issue, but I understand a very touchy subject. With a child with CF, vaccines become even more important. And I've read A LOT, and spoken to doctors, pharmacists, chiropractors etc, before deciding to vaccinate. So I am aware of what your concerns most likely are regarding vaccinating.

Also, don't hesistate to talk to the CF team about the issues you are having. Be honest about your distrust of allopathic medicine. They will/should understand and help you through it. I think you will learn to develop a trusting relationship with them in time. My CF team always takes my thoughts/ideas/suggestions into consideration and I feel I am a part of my medical team. Always feel free to ask them to explain WHY they are recommending a certain thing, and why/how they think it will work to help your son. You mentioned you are scared they will become an even bigger part of your life. They may, but not necessarily in a bad way. My CF team became like family over the years. They truly care about me, not just as a patient, but as a person. Most recently, 2 of my clinic team came to my baby shower and the whole team contributed and got me an amazing gift. Now I'm rambling...... I guess the point I'm trying to make is that your CF team can be a very valuable asset to you, and please try not to see them as "bad" from get go. I know that is hard with the position you are in now. Everything is so overwhelming, stressful, and just plain ugly.

One other note, and I hate to be a Debbie Downer here, but have they mentioned testing your other children for CF? If not, I would suggest testing them all soon.

Good Luck to you. It sounds like right now you are doing a great job of getting Dekorrah to all of his appointments and doing what is necessary!

Take Care,

Autumn

 

[heidikk]

thank you to both of you Like I said, I know intellectually that I'm being silly with my fear for the most part. Our cf team and regular family doctor have actually been mostly very supportive. For instance we decided to catch up the rest of the family on the pertussis vaccine so as to give Dekorrah a "herd immunity", and will get those shots for him after he turns 3. The jury is still out on flu shots but we are prayerfully considering them - again for all of us around him rather than for such a little guy himself. I've been thankful that so far we haven't had a lot of pressure to do more of them. Also when I knew they were about to really start pushing formula (I could see for myself that some kind of supplementation was going to be necessary as much as I dreaded the idea, and they had alluded to it at the last appointment) I started researching everything. I was pleasantly surprised that the cf nutritionist backed my plan to use goats milk and goats milk yogurt with the L. Rhamnosus cultures. And it's working. He finally started gaining the ounce a day that they wanted. So it's good. I can see the weight gain will be a never ending battle. On the heels of his perfect weight gain, the nutritionist suggested starting rice cereal and then meat. Yes, it was the cf nutritionist who said so. She actually said it was the recommendation now for all breast fed babies, not just those with cf. She said that breastmilk was low in protein. sigh. It's weird, but I'll research it and come to a decision and pray that once again, it will all be ok. God has watched over us til now, why do I worry, right? I guess my biggest concerns are that all these supplements would impact my milk supply (I'd really like to keep him nursing til at least 2yo) and that we might be sacrificing health for weight gain. If babies in our family are healthy at the 19th percentile would they be unhealthy at the 50th? know what I mean? - Heidi mom to Dekorrah, 5mo son with D-f508 cf

 

[Aboveallislove]

Dear Mom,
Congrats on your precious son! You are truly blessed. Many here have lived the agony of the newborn diagnosis and I hate to think of anyone else suffering that. Please know of my prayers for you and your family.
A few thoughts: I agree re the testing of the other children just to make sure. Also, as many vaccines as possibly the better. With CF all in household need to be protected with the basic childhood and then annual flu. Obviously things like hep-b that’s a different animal (but good for Cfer since he might end up in hospital in future.)
Re the eating this is my take: CF isn’t going to make a normally 18% BMI kid get to 50%–they won’t eat that much and if you push too hard, they’ll fight it and it’ll backfire, as it did for us. I’d say breastfeed as long as possible, and if needed to keep on a staple curve, then maybe add one formula as supplement. I thinking starting solids early is not necessarily good since they can get more calories in formula. With food, I’d trust your vast parenting experience. Listen for guidance and thoughts on things that make sense and might work. And you might need to modify the "what" if you limited things like fat, etc., but that doesn’t mean a complete reversal of what works. Our CF nutritionist has a "blue print" she pushes for every Cfer and it just doesn’t work for our son so I listen, see what works, and ignore the rest and that took us from like 11% weight at first appointment to 50%–once I started trusting his eating.
Finally, re treatments: I wish someone had told me at this stage that for treatments to push for Xopenex 2x a day and Pulmozyme 1x and manual percussion 2-3x a day. And to start the vest at around 9 months so they are use to it before toddlerhood! Oh, and of course vitamins.
Hugs and prayers dear mom

 

[triples15]

I do know what you mean, but I don't think you'll be making him less healthy with the supplements. And it is more ideal to have him at 50% (if possible) as opposed to 19% because with CF, one exacerbation could knock his weight down. I'm so glad to hear that he is gaining and that you and the cf nutritionist are on the same page. We do almond milk but have been considering trying goats milk. We do use goat cheese on crackers which is pretty yummy.

Regarding supplementing affecting your milk supply, there are a couple things you can do to try to keep your milk supply up. I apologize, you prob know this stuff, but wanted to mention it anyway just in case. You could pump for the missed feedings and take a supplement (Fenugreek or the like). Hopefully your milk supply will hold up! My daughter is 18 months and still going strong with breastfeeding, but I never had an issue with my supply. That's an interesting note about breastfed babies and meat. I had not heard that they were now recommending that so young.

I would strongly recommend getting a flu shot for your little guy this fall/winter. The flu is dangerous for even "healthy" people, but even more so for CFers. I have known several CFers who got the flu and never fully recovered or worse, died. There were a couple I knew who became very ill and died after contracting H1N1 a couple years ago. I'm not saying this to scare you, but just to inform.

Take Care,

Autumn 32 w/cf

 

[triples15]

Ok, aboveallislive posted while I was typing my last response and I've just gotta say... she nailed it exactly! Couldn't agree more with everything she said!

 

[Aboveallislove]

And while I was posting you both did. I just need to second the need for your little guy to get a flu shot as soon as he turns 6 months and a second 6 months later (they need 2 the first year). I understand the concern about vacines, but with CF the risk of no vaccine is so much greater than anything the vaccine has as a risk. And if your concern is being developed from aborted babies, I can get you info on vaccines/companies that aren't developed that way.

 

[AmalynRose]

Welcome to the site! I am sorry to hear that your son has CF but like others have stated, I am glad that you found your way here. I understand your concerns with vaccines. I am currently pregnant and my husband and I have been trying to decide which vaccines we do and do not want our child to have. It's very hard to decide which ones are worth getting. Stick to non-combination vaccines so you always know what is being given to your child, even if they have to get poked a few extra times. Combination vaccines usually have to have some type of stabilizing agent in them so it will cut down on unnecessary chemicals being introduced. As long as you have no pertussis allergies in the family I would do the whooping cough and the flu, at a minimum. Although the flu shot does not guarantee you will not get sick, it will at least give your son a bit of a boost and help him get over it faster.

I cannot really comment on the feeding at this point; I have no experience with it. The germy doctor's offices; make sure all the staff is washing their hands and using hand sanitizer. This is going to sound super nit-picky but if the doctor is wearing a lab coat do not allow your child to come into contact with that coat, not even the sleeve. Make the doc take it off and wash his/her hands if you have to. Lab coats go in and out of patient rooms and are usually kept in the office, which means they are not washed as frequently as the scrubs the nurses are wearing. They are one of the WORST places for microbial contamination and a prime carrier for those microbes to travel from room to room. Many hospitals ban their doctors from wearing them or limit the sleeve length to 3/4 or 1/2 sleeves (full length sleeves are the worst). Sorry, I'm not trying to scare you, I'm just really passionate about it because I'm a biology student and so many people don't understand how easy it is to get a secondary infection from something so simple.

 

[Justinsmama]

Hi,

My son was diagnosed late, but we did have a lot of GI issues (eosinophilic esophagitis, GERD, etc) and pulmonary (apnea, laryngomalacia, bradycardia) along with whatever may have come from the CF as my son was a baby. I nursed him exclusively for the first 15 months and then continued until he as 3 1/2. I never thought I was "that kind of mom" having weaned my first at 1 year. My feeling is as a mom (and you have way more experience than me) you know what is right for your child. For me, my son thrived from the nursing. It gave him comfort when he was sick and in pain as well as nutrition and my protection from infection. For us, I am SO GLAD that we did it. Whatever you choose, you (in connection with your doctors) I am sure you will do what is best for your baby. If the situation changes and you need to change your plan, I am sure you will know it and do the right thing. God bless you and your beautiful baby.

 

[Ratatosk]

Welcome to the site. Most of us have had similar views, feelings. We found out ds had CF due to a bowel obstruction shortly after he was born. I couldn't breastfeed; however, we did NOT use the predigested formula suggested by the hospital dietician. DS hated it -- it tasted (yes I tried it) like the way road kill smells and vomit. Our doctor suggested feeding DS what he'd eat, so regular milk based formula with extra calories. More powder to water ratio. And being it was his primary source of food, I continued to use formula until he was almost 2 years old. Breast milk is more easy to digest. When DS was 6 months old, his doctor suggested grinding up what we eat rather than baby food which is low in fat and sodium, which cfers need. I DID doctor up some babyfood with olive oil and butter and added salt. I also fed him greek yogurt, which he loved and began to add cream to his bottles. Something the dietician disliked, but the doctor supported. We always were pro-vaccination and shortly after ds was born we had the worst flu epidemic in our area in a long time. Few months later, whooping cough. Fortunately, ds was one of the healthiest children in his daycare as a baby/toddler -- a few ear and sinus infections, a stomach bug. When he developed a cold, we'd increase his cpt to 4 times a day. Today ds is a busy 3rd grader and is very active.

 

[heidikk]

again, thank you to all of you. I'm the kind of person who needs to understand the whys and wherefores of these things. Yes, I was an annoying child LOL. I certainly understand that there is a place and time for western medicine and I'm thankful to have it when it is needed. I just want to know the pros and cons and the alternatives, weigh them with or against experience (my own and others) and then make an educated choice for my child and my family. I trust the nutrients and antibodies etc in my milk to keep my kids healthy. I trust my husband's germaphobia to help protect them too. All the new things coming at once are a little scary. Now I have to go back through all the research I did on vaccines, add in cf, and reevaluate. Aboveallislove, you brought up a huge huge point in that that I can't believe I didn't think of - the hospital. We can be relatively protected as a homeschooling and home-churching family which works great for regular kids, but if Kory ends up in hospital, he has more of a chance of being exposed. I suppose it's too much to hope that he won't? You also said "I wish someone had told me at this stage that for treatments to push for Xopenex 2x a day and Pulmozyme 1x" do you mean now while his lungs are clear as a prophylactic kind of thing? Can you tell me why? AmalynRose, your comment about the lab coat is so helpful and not one I would have thought of. Is there a polite way to ask a dr. to take off his coat without being red flagged as a nut job? Rebjane, you asked how old my other children are. I have three boys, 21, 19, and 17, then five girls, 15, 13, 11, 8, and 6, and then a nearly 3 year old boy besides Dekorrah. The older ones are all wonderful wonderful helpers. My 21 yo and 19 yo are seldom home with college and work, but the others are stepping up into their places and I am so thankful to be able to not worry about my 3yo getting into trouble while I'm feeding the baby - again Justinsmama and Autumn, thank you for the encouragement. I have a nursing tea with fenugreek for a start and have a place that I can rent a pump. I know I worry more than I should - Heidi mom to Dekorrah, 5mo son with D-f508 cf

 

[heidikk]

ratatosk, you were typing while I was. I love that you tasted it. LOL My husband has always told me I have to try anything I plan to feed our babies. Baby food from the store was so gross and so we, too ground up our own as the children were old enough to be ready for it. One question I have for you, our home ground food tended to be coarser in texture than the stuff from the store. At 6 months, is there a better way to get it ground finer or did you find your children could handle more texture anyway?

 

[Ratatosk]

I used a manual food grinder and a small 1/2 cup food processor. There were some things that were easier to grind up than others. And I still used some baby food -- he loved stage 2 mac & cheese, turkey and ham, which I'd add salt and olive oil to. His favorites were chicken ala king, pasta with tomato sauce, bean soup. He did have some texture issues -- ground beef he'd gag. Daycare ground up everything very finely -- he was eating stew, tuna casserole, fish sticks. One thing he hated, still does today is green beans and peas. They swore he could tell if there was even one pea in his food and he'd refuse to eat it. I also tasted his medicines. One thing our doctor stressed to us as the most important issue regarding ds' care was lungs. Even though they're born with normal lungs, with the extra thick sticky mucus, future infections, the lungs will eventually become affected. So it's very important to be proactive. We did CPT with nebs to open up the airways 4 times a day while I was on maternity leave (granted he's an only child) and when I returned to work we did it 3 times, which we still do today. Twice a day is fine. Also important to be active, exercise. We're still trying to figure out what activities ds would like for life long exercise -- we've tried skating, baseball, tennis, swimming. He's in gymnastics and his daycare has them outside year round, even in the snow --- playing, walking. I realize this is all overwhelming. I've got about 10 years on you. Was terrified and I still have my moments. It's important to take it one step at a time, little by little get into a routine. And ENJOY your baby! He's still a normal baby first and foremost.

 

[heidikk]

I'm probably being dense, but what would be the purpose of having the other children tested for cf? None have shown pancreatic insufficiency or any lung problems. Perhaps our family bears out that the statistics don't mean that 25% of our children "should have" cf, but rather that each of our children has had their own 25% chance of being born with the disease. 75% is pretty good odds. If it would be for the purpose of wanting to know if they are carriers who could pass it on to their children, would that not be a better decision for them to make with their future spouses?

 

[Ratatosk]

I have a friend whose son was diagnosed thru newborn screening, so they tested his 3 year old sister who had no symptoms -- wasn't overly small, some stomach issues attributed to reflux, never got sick except for an ear infection. Turns out she also had cf. They're both ddf508. It IS important that they're aware of the possibility of being a cf carrier when they decide to have children. With our families there is absolutely no family history. I've looked at genealogy that goes back hundreds of years on my side and a hundred plus on my husband's side. Other than a stillborn uncle, no family history. I have a friend from high school with all 3 of her children having cf. Just the "luck of the draw" I guess.

 

[Aboveallislove]

To follow-up with your questions.
Re the testing of other children. I think you should do to make sure none have CF. If it were just for carrier status, I’d say sure leave it up to them. But those who have been on this site for some time could tell you there are many examples of folks learning another sibling has CF or even the parent, after a baby tests positive at newborn screening. Because your son has ddf508 it is an easy blood test.

Re the Xopenex and Pulmozyme, it isn’t profilactic in the sense of “preventing something that hasn’t happened,” but rather preventing “something that is happening.” The lungs start out healthy and slowly build up mucus, have inflammation, and irreversible damage. It cannot be seen until the damage is done. Xopenex opens airways and Pulmozyme thins the mucus (it has been described as “cutting” the DNA in the CF mucus), and the percussion keeps the mucus moving so bacteria doesn’t grow. Think of food sitting in the refrigerator, unstirred it grows stuff quickly, stirred it takes much longer. Starting the vest around 9 months makes life easier and has your little one use to the vest before he is older, i.e., toddler, with that kind of resistence.
Re your comments on western medicine. I am not sure what your concerns are so it is hard to know what to address, but I understand the desire to avoid chemicals, risks, etc., because of the harm they might do to the body. But here is the thing: CF destroys the body. That is a fact (at least now—below I mentioned the drugs that are right around the corner!) and not a potential. And normal childhood illness can cause permanent damage, can lead to hospitalizations (and more exposure to bacteria/germs), and can lead to the need for antibiotics and some very strong ones (and thus more chemicals in the body!) While prior to our son’s diagnosis I was picking and choosing vaccines, now it is not a question because the risk to go without just is so much greater. And because vaccines are not perfect protection, vaccinating the entire family is important too. Please know this is coming from someone who understands what you are saying. We are homeschooling. Many of my friends do, including dear friends who like you are blessed with 10 (one my Godson and another I’m the confirmation sponsor for.) That mom actually warned me about having too much play time with our son and the local homeschool group because most of the kids weren’t vaccinated. Our first CF doctor whose grandfather was an eastern doctor of medicine gave us this rule of thumb: If natural or eastern medicine does not harm/has no risks, fine, even if the benefit is unknown. But with CF you cannot just write off the standard of care which is lots and lots of medicines. If you read the “warnings” on any of the medicines they will scare you beyond belief. Don’t. The doctors know the pros and cons. Ask the doctors the benefits and the risks. The pharma companies must disclose every potential thing; the doctors will tell you the real risks and help you make an informed choice.
Now food and eating is another matter because while the doctors dietitians can give you nutritional info, they aren’t experts (for the most part) in feeding. They might say “feed them more,” without the reality that they will eat what they eat and you can’t force more. That said, the “normal” nutritional things you know don’t apply—they need more salt, they need more fat, so keep that in mind.
Finally, I just want you to know that I do know of your heartache. Our son isn’t quite 4 and God only blessed us with him (and an unborn baby in heaven), so I know the pain, sadness, worry you face. I feel very strongly re the vaccines and the medicines and since you wrote for thoughts, I shared mine. And part of the reason is the hope that is so close. There is a new drug just now starting in Phase 3 trials (which is the stage right before the FDA) and it is for those with ddf508. It “fixes” the underlying defect of the genes. It isn’t a cure but it is a great improvement. And there are other drugs in the work that can turn CF into a completely different kind of disease. Others with a different gene already have a medicine which for some has “tricked” the body into thinking it doesn’t have CF. These drugs will be to market in about 1.5 years for the first and maybe 3-4 years for next generation.
Please let me know if you have any questions,
Godspeed.
Love

 

[triples15]

You're welcome Heidi!

I think the others here have given excellent thoughts/advice. I'm sure right now it's all overwhelming and hard to hear, but it's so great that you are seeking out all the knowledge that you can!

Regarding testing the other children... Just as others have mentioned there are many people who have had older children diagnosed after a new child trips the newborn screen. Sometimes these older children have no symptoms. Also, in general, if you stick around this site for long you will see there are LOTS of people who were not diagnosed until later in life. We have at least one person on here (that I know of) that was diagnosed in their 50s. Another mom here was recently diagnosed after her daughter was diagnosed.

The main point to having them tested is that with this disease it is better to be proactive rather than reactive. Although we certainly hope and pray none of them have CF, it would be better to know now rather than to wait until they start showing symptoms.

Autumn 32 w/cf