please help..how much meds is too much??

[anonymous]

I, too, was recommended to stop breastfeeding my daughter with cf when she was four months old. I later regretted stopping. I didn't know at the time how beneficial breastmilk is for kids with cf (DHA, antibodies, easy digestion, etc). I also have learned that the medical community often varies in opinion. One doctor tells you to stop breastfeeding while the next day another would tell you to continue. My second child was also born with cf. I was determined to breastfeed him as long as possible. I did until he was a year old. Both of my children also had milk allergies. This caused so many problems for my daughter when she switched to formula (vomiting, refusal to eat, needed a feeding tube for three months until it was determined that she had a milk allergy). It has really helped me to become educated (like you are doing!) and take an active role in the medical decisions for my children.

Jack, now 14 months, also cultured pseudomonas six weeks ago. His cf doctor was concerned about giving Jack Cipro due the side effect of LOOSE STOOLS. He did put Jack on cipro last week after his first culture after a month of Tobi came bake positive for pseudomonas. Also, Tobi can cause a dry cough. IV antibotics should be considered if inhaled Tobi and Cipro are not able to erradicate the pseudomonas.

Both of my children had a productive cough until they were about 10 months. I think it had to do with reflux. Once they were put on Prevacid/Prilosec (not over the counter) their coughs really improved.

The first six months or so are really challenging. It does get easier as they get a little older, I promise!

Sharon, mom to Sophia, 3 and Jack, 14 months both with cf

 

[anonymous]

I, too, was recommended to stop breastfeeding my daughter with cf when she was four months old. I later regretted stopping. I didn't know at the time how beneficial breastmilk is for kids with cf (DHA, antibodies, easy digestion, etc). I also have learned that the medical community often varies in opinion. One doctor tells you to stop breastfeeding while the next day another would tell you to continue. My second child was also born with cf. I was determined to breastfeed him as long as possible. I did until he was a year old. Both of my children also had milk allergies. This caused so many problems for my daughter when she switched to formula (vomiting, refusal to eat, needed a feeding tube for three months until it was determined that she had a milk allergy). It has really helped me to become educated (like you are doing!) and take an active role in the medical decisions for my children.

Jack, now 14 months, also cultured pseudomonas six weeks ago. His cf doctor was concerned about giving Jack Cipro due the side effect of LOOSE STOOLS. He did put Jack on cipro last week after his first culture after a month of Tobi came bake positive for pseudomonas. Also, Tobi can cause a dry cough. IV antibotics should be considered if inhaled Tobi and Cipro are not able to erradicate the pseudomonas.

Both of my children had a productive cough until they were about 10 months. I think it had to do with reflux. Once they were put on Prevacid/Prilosec (not over the counter) their coughs really improved.

The first six months or so are really challenging. It does get easier as they get a little older, I promise!

Sharon, mom to Sophia, 3 and Jack, 14 months both with cf

 

[anonymous]

hi
I was thinking... reflux medicine would not help more than the nectar? and did your doctor talked to u about pulmozyme?? It is a great medicine...
TOBI always makes my son cough a little.
My son's GI doc wanted me to stop breastfeeding but I didn't agree and my son is fine now around 90% for weight, I breastfed him until 14 months.
hope everything works fine
love
val
mum to torin 21mowcf

 

[anonymous]

hi
I was thinking... reflux medicine would not help more than the nectar? and did your doctor talked to u about pulmozyme?? It is a great medicine...
TOBI always makes my son cough a little.
My son's GI doc wanted me to stop breastfeeding but I didn't agree and my son is fine now around 90% for weight, I breastfed him until 14 months.
hope everything works fine
love
val
mum to torin 21mowcf

 

[anonymous]

Thank you all for your kindness and support. It has been such a blessing to turn to this site. I have stopped Noah's Nectar in his bottles and his congestion and thick mucus has subsided by 90%. His stools have thickened and lessened from 3 a day to 2. I have 2 other children without cf who were breastfed for only 4 weeks. Now after reading your notes I am going to continue until Noah is a year or so, if the good Lord will allow me to..

Again, thank you all so much. My prayers are with your family and children.
Belinda mom to Noah wcf

 

[anonymous]

Thank you all for your kindness and support. It has been such a blessing to turn to this site. I have stopped Noah's Nectar in his bottles and his congestion and thick mucus has subsided by 90%. His stools have thickened and lessened from 3 a day to 2. I have 2 other children without cf who were breastfed for only 4 weeks. Now after reading your notes I am going to continue until Noah is a year or so, if the good Lord will allow me to..

Again, thank you all so much. My prayers are with your family and children.
Belinda mom to Noah wcf

 

[anonymous]

I had to jump in too! I stopped breastfeeding at about 5 months-actually due to supplementation my baby essentially weaned himself. He's seven(years!) now and I still mourn the premature loss of that special bond and feel quite resentful that we were not supported more in the breastfeeding. Keep it up as long as you and your baby feel the need! Especially with all the meds and treatments and stress you need something purely wonderful like nursing your baby. Good luck!

 

[anonymous]

I had to jump in too! I stopped breastfeeding at about 5 months-actually due to supplementation my baby essentially weaned himself. He's seven(years!) now and I still mourn the premature loss of that special bond and feel quite resentful that we were not supported more in the breastfeeding. Keep it up as long as you and your baby feel the need! Especially with all the meds and treatments and stress you need something purely wonderful like nursing your baby. Good luck!

 

[anonymous]

My husbands Cystic Fibrosis was diagnosed at 18 months, about 3-4 months AFTER his mom stopped breast feeding him, when he started loosing weight, coughing attacks, getting sick a lot... I dont think this is a coincidence and neither does my husband, or his mother. Breastfeed that baby of yours as long as you can. My mother in law says that looking back, she wished she would have done it longer because he was healthiest when he was breast fed. Even if that meant pumping it and putting it in his cereal and such. It's definetly an individual decision to want to take it that far, but he was healthiest as a baby when he was breastfed!

Julie

 

[anonymous]

My husbands Cystic Fibrosis was diagnosed at 18 months, about 3-4 months AFTER his mom stopped breast feeding him, when he started loosing weight, coughing attacks, getting sick a lot... I dont think this is a coincidence and neither does my husband, or his mother. Breastfeed that baby of yours as long as you can. My mother in law says that looking back, she wished she would have done it longer because he was healthiest when he was breast fed. Even if that meant pumping it and putting it in his cereal and such. It's definetly an individual decision to want to take it that far, but he was healthiest as a baby when he was breastfed!

Julie