Thursday, October 1, 2009

CF Grandma Needs Our Help!!!

Here is an email I received from a concerned grandmother concerning her grandchild who has CF. I haven't come across this in talking with other parents, so I couldn't be that much help. I'm hoping that some of you guys will be able to relate and leave her some comments about what you think may be going on.

Hi Ronnie,
I saw an invitation from you for queries by new parents. My daughter has a four-month-old son who was diagnosed at two weeks old; she does not have time for Facebook or even for emailing right now. Our little Aidan sleeps only around ten hours out of twenty-four; he gets so tired, sleepy, and cranky during the day but can't fall asleep. When he does go to sleep during the day he only sleeps a short time.

My daughter has mentioned this problem at her treatment center (Vanderbilt) several times but they don't seem to grasp the severity of the behavior - although they do recognize he isn't gaining the weight he should, given the number of calories he ingests. I had this wild idea that maybe his electrolytes are depleted when he is so "worked up" and "hyper," and perhaps several ounces of Pedialyte could help. Table salt is added to his formula but maybe there are other elements missing from his body. Do you have any other ideas about this problem - have you heard of this problem? They are desperate for rest and peace!

I live three to four hours away and cannot relieve my daughter very often!
Hoping to hear from you soon,
Aidan's grandmother (Name Withheld)
So what do you guys think? CF related? Did any of you experience this with your CF child (or non-CF child for that matter)? Let's help her out!

11 people had something to say...:

Dan said...

This is totally my non-scientific thoughts, but our nutritionist told us to always be pumping Gatorade into our daughter (for the last year or so and she's 3 now). So honestly, it might be a CF issue. Still, I'm not even close to being a doctor, all I am is a guy putting 2 and 2 together. My daughter's nutritionist told us to do that, so maybe it is a problem. We didn't have that issue when Sam was a baby, so I don't know for sure. Sorry for the long disclaimer!

Anonymous said...

That is an interesting theory. I hadn't consisdred those thoughts before.
I would say it is possible. I have 2 daughters with CF (23 months old & 7 years old). Both girls slept well at nights, but would only take mini naps (10-15 min.) during the day pretty much the entire 1st year of life. My 23 month old is taking around 1-2 hour naps now, but just one nap a day if that. She is in the 25% for both height and weight. We have struggled to keep her weight up since she was diagnosed at one month (that was when we got the results back from her cord blood sample test for CF).

When our 23 month old turned 11 months old our clinic doctors put her on Pediasure and told us that it has more calories than whole milk and not to switch her over to whole milk at 12 months old. She is still on Pediasure and from every appearance a normal, happy, healthy child.

We added the extra salt to our baby's diet. Blood tests also showed that our baby had low vitamin K levels, so we crushed up a vitamin K pill in the spoonful of applesauce we gave our baby her enzymes in with a little salt at each feeding.

Now at 23 months old she is demanding to put the spoonful of applesauce and enzymes to her mouth (by herself) as well as be the one to push the syringes of antacid (for better enzyme absorption), allergy meds, antibiotics you name it.

It is encouraging to me to see my 23 month old take charge of some aspects of her CF care.

Having an infant diagnosed with CF was different for me. My first child wasn't diagnosed until she was 2 years old. Going to all the clinic visits for my infant felt like watching a pot of water to boil as we watched her weight under a microscope and fretted about ways to get more calories into her tiny little baby stomach.

At some point we had to realize that at least there was weight gain (no matter how little or how long between) and that we could eihter frett and worry our time away, or we could enjoy every minute we have with her.

My heart goes out to you new grandbaby.

pattisunshine said...

Before my son was diagnosed (at 3 months) he would sleep on & off all day, and had a vacant look in his eyes. He would fuss if we laid him down in any position but his left side. After he was DX, and we started the CPT and Flovent inhaler, his sleep patterns suddenly became normal. Your grandson may be having a hard time breathing. My theory.

Anonymous said...

Something to ask the CF doctors. Have they considered sleep apnea? Is it possible for an infant to have sleep apnea? My CF daughter was diagnosed with obstructive sleep apnea at age 5. She had her tonsils and adenoids removed (along with some nasal polyps) and the follow up sleep study showed that the surgery had corrected her sleep apnea.

Zoe Isabella said...

Our little cf'er didn't sleep well at all. For at least a couple of years. I have heard this is not abnormal. Their bodies are trying to deal with reflux, undigested food, breathing issues, gagging issues, etc.....not a normal situation. After a while, their bodies get more used to the meds, even out a bit more. Just give them their meds, treatments, make sure all their needs are met, they will become content someday. In the meantime, hug and love them! :)

Josh said...

Is it possible that the little one has developed post nasal drip as a result of allergies already?

If his allergies are bad enough, he may not be able to sleep because of all the drainage going down his throat. Eventually your body becomes so exhausted that you pass out for long periods of time, but you never get quality REM sleep. This happened to me a lot as a child.

Peaceful thoughts for Aiden and his family.

Mary ElizaBeth Peters said...

I had a CF doc once who said, if you have CF, and you have another medical problem, you should not even ask "Is it CF?" because it is ALL CF in some way. I think he's right. Why else would the little tikaroo have sleep problems so consistently? Maybe it's harder for him to go into a resting breathing rate, so napping is not for him. Maybe his tummy hurts too much from daytime formula/nursing. Keep asking CF Mommies. I'll repost to my blog.

Anonymous said...

I am an adult Cfer and a Mom. I was thinking as I read the baby my be having problems sleeping because of a side effect of one of his meds. For example a I have to take Cipro a few hours before bed and eliminate caffine completely or i do not sleep. I am not a doc but I have had insomina from a few other meds in the past. Check side effect and may need to look into alternative with doctors.

johncoleman1 said...

I dont think its CF related at all. its probably just colic.My advice buy your grandchild an electric SWING,your daughter will thank you.

Lucy's mom said...

There could be so many different reasons why this infant is not sleeping well but we don't know all the factors. All we know is he has CF and is formula feeding.

Some children just don't sleep as well as others and when people expect a 4 month old to sleep through the night, it is just crazy! It is suggested that an average 4 month old will sleep 9-12 hours a day with a couple of naps. The baby is in the okay range for sleep time (10 hours) but naps are key...even if they are short.

Some infants get grumpy during awake times if they are over-stimulated by their surroundings...lights, sound, new people. At 4 months old a child is beginning to see further distances and noticing the world around them and it can be VERY over-whelming! Calming the infant can be as easy as turning off the TV, a dark room or telling guests to leave or head home for some quiet baby time.

I am also VERY VERY against formula feeding (this is my opinion...send hate mail if you'd like) and sometimes the culprit for many things including lack of sleep, stomach issues, reflux, etc. is due to the formula. Since, at 4 months postpartum, it is not always possible for a new mother to re-lactate and breastfeed then the solution may be as simple as switching brands of formula (formula allergy.)

It could also be, like another commenter said, a side effect of a certain medication.

A new parent is always overly concerned about thier bundle of joy and being a CF parent/grandparent can be an even greater stress trying to figure out what is 'wrong' with them!
I have ALWAYS tried to be a CF parent that knows and understands that some ailments are NOT always CF related and NOT to freak out about the little stuff. She is first and foremost a normal child who just happens to have CF and treat her as such.

Basically what I am trying to say :) is that being a new parent is not easy, CF or not, and I hope it all works out for the new family in the long run. It is hard to get any sleep in the beginning and that is certainly not CF related!

julie said...

We had the same problem with my granddaughter who has Cf. Her problem was reflux. She seemed to sleep better after we got her something to help with the pain.Her mother was a colic baby so i have lots of experience walking the floor with an unhappy infant! I know it doen't help right now but it does eventually end.If its colic it usuallu subsides right around four mo. If its acid reflux it wont subside.medication is needed. Cf babies also have a difficult time breathing when sleeping..hope everything works out for the little guy!