Any advice for a first time CF Mum

A

anonymous

New member
Hi All, this is the first time I have posted, hope I'm doing this right. I have a 6mth old baby boy, Archie who was diagnosed at 4 weeks through the screening. Apart from being on Creon and Zantac he has been well until this week when he has got his first infection - doesn't seem to be anything too bad at this stage and his on antibiotics to help clear it up.
I was just wondering if all you very experienced CFers could suggest anything I could do for Archie that will help with his CF ie: ventilator in room? or any other remedies you think would be beneficial for a bub.
He is allergic to cows milk and peanuts as well, just to add to my worries! But hopefully he may grow out of them... fingers crossed.
Your advice would be greatly appreciated.

Salli mother of Archie 6mths w/cf
 
A

anonymous

New member
Salli,

If you're talking about a ventilator -- are you referring to a humidifier or an air cleaner. I'm a little apprehensive about adding steam to DS's room because if you don't clean those things properly, they could grow mold, etc and cause more problems.

When DS gets a little congested or has an infection -- sinuses or upper respiratory. I get the bathroom all steamy and put him in the tub. We also use saline spray to clear out his nose and then suck out the boogies with a bulb syringe - he HATES it, but at least he can breathe at night. I recently found some stuff called simply saline that's an aeresol spray that's not as traumatic.

Do you do chest physiotherapy yet? When DS has gotten sick, we're told to increase his CPT treatments -- patting on the back, chest and sides from 3 times a day to 4 times a day.

Liza
 
J

julie

New member
Hi Salli,

I am the wife of a CFer, so I don't have too much advice to offer you but I do want to welcome you to the website!
 
H

HollyCatheryn

New member
One of the biggest things you could do to potentially dramatically support his health is to consider relactating.

There are numerous moms on this board who have helped sustain and improve their child(ren)'s health through breastfeeding. If you aren't doing so right now, it is actually relatively easy to bring a milk supply back in or to induce one in the first place. The optimum nutrition for a baby with CF is recommended to be his mother's milk with enzyme supplementation if it is needed.

You can check <a target=_blank class=ftalternatingbarlinklarge href="http://www.geocities.com/MurrensNatureMama/specific_concerns_of_breastfeeding">www.geocities.com/MurrensNatur...cerns_of_breastfeeding</a> for some info. It is under "Special Circumstances." I am happy to share more information on this. There are lots of practicies that can help the process along.

Another thing is to consider a supplement like Reliv that will help ensure that he has no nutritional gaps that prevent him from fully using all that he eats and will support his immune system.

You might also consider reading something like <u>No More Amoxicillin: Treating Ear and Respiratory Infections Without Antibiotics</u> by May Ann Block. It is very helpful in determining the root of the symptoms and treating the root issue in ways that help to support the whole health of the child.
 
A

anonymous

New member
Thanks Holly,

I am still breastfeeding and just supporting that with a soy formula (allergic to cows milk) top up bottle here and there when he needs it as well as solids - but we aren't too great at those yet. His weight is good at the moment - just below 50%. I am planning on breastfeeding for a year maybe longer if all is going well. I regularly see a naturpath who will also be treating Archie so I will ask him about Reliv - Is that product available in Australia do you know?
Will pick up a copy of that book - thanks for your advice and everybody elses too.


regards, Salli

P.S - Thanks for welcoming me into the group Julie <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

anonymous

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

Hi All, this is the first time I have posted, hope I'm doing this right. I have a 6mth old baby boy, Archie who was diagnosed at 4 weeks through the screening. Apart from being on Creon and Zantac he has been well until this week when he has got his first infection - doesn't seem to be anything too bad at this stage and his on antibiotics to help clear it up.

I was just wondering if all you very experienced CFers could suggest anything I could do for Archie that will help with his CF ie: ventilator in room? or any other remedies you think would be beneficial for a bub.

He is allergic to cows milk and peanuts as well, just to add to my worries! But hopefully he may grow out of them... fingers crossed.

Your advice would be greatly appreciated.



Salli mother of Archie 6mths w/cf</end quote></div>
 
A

anonymous

New member
Hi Salli,

I have a daughter with CF. She is 2 years and 3 months. She was diagnosed on screening at 6 weeks. She takes creon, dalivit, antibiotic, colomycin via nebuliser. Do physio twice a day. If you have any questions let me know and I'll try my best to help. I'm pretty new to this 2 tho!

Charlotte<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
A

anonymous

New member
Hi Sallie,

i just wanted to add that I breastfed my daughter with CF. I found it to be rewarding in that it was one thing that noone else could provide for her except me to keep her healthy. I actually breastfed her through 2 surgeries(hers) pumping when she could not take by mouth and through her first real cleanout. It provided her with comfort in situtions that were quite uncomfortable. Nursing beyond thier first year is ok as well.

Rebecca (mom to Sammy 7 no CF and Maggie 3 with CF)
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/Great_Strides/RebeccaMurray">http://www.cff.org/Great_Strides/RebeccaMurray</a>
 
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