Replies: Growth Charts, TOBI, Jo Jo, Chris, Janet

[Guest guest]

Growth charts were definitely developed by formula companies. Most doctors

take that into consideration if you are breastfeeding. However, all that

means is that a breastfed baby will be leaner than the charts -- so the

height to weight ratio is higher in breastfed babies. (meaning they carry

less poundage per inch.) It doesn't mean that it is good for a breastfed or

formula baby to drop from where they had been tracking on the growth chart.

The child could drop some, but going from 75th to below the chart is

potentially dangerous to the health of the child.

Jen,

When she says he is going the wrong way she means he is not keeping up with

an appropriate growth rate. It is good he is still growing, but he should be

growing faster. Scout also continued to grow (until we put her on formula),

but she wasn't growing fast enough and dropped off of the chart. Babies grow

a lot in the first year. Their growth rate slows in the second year quite a

bit. Failure to thrive is so serious of an issue. I remember the GI telling

us that Scout's nourishment status (from bloodwork) was so bad that he

didn't know if she would be able to survive an illness. He thought it might

have been more than her system could have handled. He might have said that

to make sure I was taking the issue seriously (which I was), but it still

got my attention. You owe it to your own peace of mind to make sure that

ph is a healthy small baby and not a failure to thrive baby.

A couple of ideas for you - have you done everyone's favorite, poop

watching. How often does he poop? What do the poops look and smell like?

This might give you a clue as to whether it is malabsorption or not. You

also could go to a board at http://www.parentsplace.com Go to their

messageboards and then children's health and under that Failure to thrive.

Someone there might be able to tell you other things to look for (as

malabsorption isn't the only cause of Failure to Thrive.)

Okay, I will now try to mind my own business on the topic, but it is very,

very hard for me. It is just such a horrible thing to go through.

TOBI

I think our pulm. told us she had no objection to us doing another month of

TOBI because we will still have it left over. (since we are doing half

vials). I teased her that I could do it behind her back anyway! She really

did seem to be 100% okay with it though. And she would then have to turn in

a scrip for the next time we need TOBI.

Chris

I am really sorry to hear about your mom. I agree about this #$#%# disease

and I hope your son is doing better.

Janet

Apparently according to some registry of CFers. Pancreatic sufficient

patients do (currently) live about 10 years longer. This was a big point of

discussion recently on Cystic-L. I question it too. I really think the

reason for it is that better (enteric-coated) enzymes haven't been around or

accessible to everyone for 40 years. There is also, of course, the issue of

people who are pancreatic insufficient not getting proper nutrition before

they are diagnosed and depending on how long that takes how much damage has

been done.

On the mild thing, I think in the past the definition of mild just meant

pancreatic sufficient. Anymore I know everyone would choose healthy lungs

over the ability to digest fat/protein without enzymes. Unfortunately, old

habits seem to hang around for a while. I think it is a disservice to

patients and parents to label a CF child. It unfortunately seems to make the

Dr. more or less likely to treat them aggressively.

Hope I didn't offend anyone any where in this. My husband says I make our

Pulm. nervous - I can be a little direct sometimes.

Lori D.

mom to Scout 20 mo. wCF