As I write this my husband is upstairs administering TOBI to our almost 4 month old daughter. She is SCREAMING as she does with every dose of TOBI. She gets all red and shrieks, until she just about passes out. The TOBI takes half an hour! She usually screams through at least 3/4 of it. The night time dose is given at our older daughter's bedtime. The screaming keeps her awake and upsets her very much. She's only 3 and just can't understand why we "make Emily cry so hard." I've gone into her room to find her lying in bed with her head under the pillow crying because she's so upset for her sister. I can't help but wonder what this 28 day at a time torture is doing to her, let alone the little one. We really can't do the TOBI earlier because of our work schedules, don't want to wait until the older one is asleep because then it's really late for all of us. I hate this. For all of us. It absolutely breaks my heart. She gets albuterol, too, which isn't so bad. So, what is it about the TOBI that she obviously hates? How long does it take others of you to give the TOBI? We have the Pari LC plus with a Pro neb compressor. I forget the doseage but it seems pretty standard - one ampule. Any suggestions on how to make this more bearable? We have seven days left in this cycle, then will have to do at least two more rounds, until we get two negative cultures. Our culture after the first round was still positve for psuedo. Any suggestions or just "hang in there" messages are welcome!
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I hate TOBI
- Thread starter anonymous
- Start date
As I write this my husband is upstairs administering TOBI to our almost 4 month old daughter. She is SCREAMING as she does with every dose of TOBI. She gets all red and shrieks, until she just about passes out. The TOBI takes half an hour! She usually screams through at least 3/4 of it. The night time dose is given at our older daughter's bedtime. The screaming keeps her awake and upsets her very much. She's only 3 and just can't understand why we "make Emily cry so hard." I've gone into her room to find her lying in bed with her head under the pillow crying because she's so upset for her sister. I can't help but wonder what this 28 day at a time torture is doing to her, let alone the little one. We really can't do the TOBI earlier because of our work schedules, don't want to wait until the older one is asleep because then it's really late for all of us. I hate this. For all of us. It absolutely breaks my heart. She gets albuterol, too, which isn't so bad. So, what is it about the TOBI that she obviously hates? How long does it take others of you to give the TOBI? We have the Pari LC plus with a Pro neb compressor. I forget the doseage but it seems pretty standard - one ampule. Any suggestions on how to make this more bearable? We have seven days left in this cycle, then will have to do at least two more rounds, until we get two negative cultures. Our culture after the first round was still positve for psuedo. Any suggestions or just "hang in there" messages are welcome!
Have you tried doing the treatments while she watches Baby Einstein? Our daughter use to kick, scream and cry at any treatment until I put these videos in for her.....right around your daughter's age. I didn't know what to do until one day I decided to try these videos....I tried them on her at 3 months, 9 months and 12 months but they never caught her attention. Anyway, I decided one day to try them at 15 or so months and she couldn't take her eyes off of the tv...it was the best thing ever!
Have you tried doing the treatments while she watches Baby Einstein? Our daughter use to kick, scream and cry at any treatment until I put these videos in for her.....right around your daughter's age. I didn't know what to do until one day I decided to try these videos....I tried them on her at 3 months, 9 months and 12 months but they never caught her attention. Anyway, I decided one day to try them at 15 or so months and she couldn't take her eyes off of the tv...it was the best thing ever!
Caleblove0802
New member
We have faced the same situation when giving our son (6 months) his breathing treatments. At one point we were doing albuterol, DNAse, and CPT back to back. He would scream like crazy. We have a very similar DVD to the Baby Einstein...It is called Praise Baby. We put that DVD on and he does not even know that he is getting his treatments, including CPT. Of course when the credits are shown at the end he will start to cry...so we just restart it. Hopefully a video would help you out. I have also been known to make silly faces at my son and make silly noises, practically do kart-wheels to make his mind be anywhere but on his treatments.
Best of Luck!
Melissa
1 son, Caleb w/cf 6month TWENTY ONE POUNDS!!
Best of Luck!
Melissa
1 son, Caleb w/cf 6month TWENTY ONE POUNDS!!
Caleblove0802
New member
We have faced the same situation when giving our son (6 months) his breathing treatments. At one point we were doing albuterol, DNAse, and CPT back to back. He would scream like crazy. We have a very similar DVD to the Baby Einstein...It is called Praise Baby. We put that DVD on and he does not even know that he is getting his treatments, including CPT. Of course when the credits are shown at the end he will start to cry...so we just restart it. Hopefully a video would help you out. I have also been known to make silly faces at my son and make silly noises, practically do kart-wheels to make his mind be anywhere but on his treatments.
Best of Luck!
Melissa
1 son, Caleb w/cf 6month TWENTY ONE POUNDS!!
Best of Luck!
Melissa
1 son, Caleb w/cf 6month TWENTY ONE POUNDS!!
Well I have no advice for the TOBI because luckily we have not had to do it yet. But we did experience the nebs, Xopenex and Pulmicort, starting at 3 months with diagnosis, so I know the battle of getting a young baby to do them can be hard. The videos are a good idea, or any DIsney Movie of your older daughters, something with bright colors and music, my daughter loved Monsters Inc. Have you tried doing them when she is asleep?
Please hang in there and know that you are doing the best for your daughter by giving her the TOBI treatments. You have the best chance at eradicating the PA now and getting rid of it by agressively treating it right after catching it. You need to get rid of the PA, so no matter how hard it is you HAVE to do it!!! Have you tried singing to him while you do it?
The only other alternative I can think of is asking the doctor to admit her to the hospital and do the IV Tobramycin, if you feel you really can't do the torture of the TOBI nebs and that she is not actually getting the medicine. Personally this will be the route I choose when Hayley cultures PA, I want to hit it with the big guns (IV tobramycin) early to try and eradicate it, so you may ask your doctor and see what they think!
Good Luck!!
Please hang in there and know that you are doing the best for your daughter by giving her the TOBI treatments. You have the best chance at eradicating the PA now and getting rid of it by agressively treating it right after catching it. You need to get rid of the PA, so no matter how hard it is you HAVE to do it!!! Have you tried singing to him while you do it?
The only other alternative I can think of is asking the doctor to admit her to the hospital and do the IV Tobramycin, if you feel you really can't do the torture of the TOBI nebs and that she is not actually getting the medicine. Personally this will be the route I choose when Hayley cultures PA, I want to hit it with the big guns (IV tobramycin) early to try and eradicate it, so you may ask your doctor and see what they think!
Good Luck!!
Well I have no advice for the TOBI because luckily we have not had to do it yet. But we did experience the nebs, Xopenex and Pulmicort, starting at 3 months with diagnosis, so I know the battle of getting a young baby to do them can be hard. The videos are a good idea, or any DIsney Movie of your older daughters, something with bright colors and music, my daughter loved Monsters Inc. Have you tried doing them when she is asleep?
Please hang in there and know that you are doing the best for your daughter by giving her the TOBI treatments. You have the best chance at eradicating the PA now and getting rid of it by agressively treating it right after catching it. You need to get rid of the PA, so no matter how hard it is you HAVE to do it!!! Have you tried singing to him while you do it?
The only other alternative I can think of is asking the doctor to admit her to the hospital and do the IV Tobramycin, if you feel you really can't do the torture of the TOBI nebs and that she is not actually getting the medicine. Personally this will be the route I choose when Hayley cultures PA, I want to hit it with the big guns (IV tobramycin) early to try and eradicate it, so you may ask your doctor and see what they think!
Good Luck!!
Please hang in there and know that you are doing the best for your daughter by giving her the TOBI treatments. You have the best chance at eradicating the PA now and getting rid of it by agressively treating it right after catching it. You need to get rid of the PA, so no matter how hard it is you HAVE to do it!!! Have you tried singing to him while you do it?
The only other alternative I can think of is asking the doctor to admit her to the hospital and do the IV Tobramycin, if you feel you really can't do the torture of the TOBI nebs and that she is not actually getting the medicine. Personally this will be the route I choose when Hayley cultures PA, I want to hit it with the big guns (IV tobramycin) early to try and eradicate it, so you may ask your doctor and see what they think!
Good Luck!!
Hi there, we used to give our daughter her TOBI while sitting in her infant swing watching a video - but granted she was 14 months the first time she did it. We just held the mask near her face until she was able to hold it by herself (16 months). If nothing else, try giving them to her while she is asleep. Also, have you taken the cap with the blue thingie off of your neb cup? If not, once you do this should reduce your neb time to 15 mintues or less. When you are using a mask (Bubbles or Infant masks) you shouldn't leave the cap on the top.
It will get easier over time.
Hugs,
Kelli - mom of Sydney 2.5 wcf
<a target=new class=ftalternatingbarlinklarge href="http://members.tripod.com/sydneymyers-ivil/index.html">http://members.tripod.com/sydneymyers-ivil/index.html</a>
It will get easier over time.
Hugs,
Kelli - mom of Sydney 2.5 wcf
<a target=new class=ftalternatingbarlinklarge href="http://members.tripod.com/sydneymyers-ivil/index.html">http://members.tripod.com/sydneymyers-ivil/index.html</a>
Hi there, we used to give our daughter her TOBI while sitting in her infant swing watching a video - but granted she was 14 months the first time she did it. We just held the mask near her face until she was able to hold it by herself (16 months). If nothing else, try giving them to her while she is asleep. Also, have you taken the cap with the blue thingie off of your neb cup? If not, once you do this should reduce your neb time to 15 mintues or less. When you are using a mask (Bubbles or Infant masks) you shouldn't leave the cap on the top.
It will get easier over time.
Hugs,
Kelli - mom of Sydney 2.5 wcf
<a target=new class=ftalternatingbarlinklarge href="http://members.tripod.com/sydneymyers-ivil/index.html">http://members.tripod.com/sydneymyers-ivil/index.html</a>
It will get easier over time.
Hugs,
Kelli - mom of Sydney 2.5 wcf
<a target=new class=ftalternatingbarlinklarge href="http://members.tripod.com/sydneymyers-ivil/index.html">http://members.tripod.com/sydneymyers-ivil/index.html</a>
Haileysmommy
New member
I feel your pain. Hailey screams when we do hers. Sometimes it is for the entire 30min and sometimes only for a few min. I will have to try the tv thing. Usually she likes to push the keys on the computer during a treatment. I don't have any suggestions on how to make it go more smoothly. Hopefully they will just get used to it. If I rock her and sing it does help a little bit.
Haileysmommy
New member
I feel your pain. Hailey screams when we do hers. Sometimes it is for the entire 30min and sometimes only for a few min. I will have to try the tv thing. Usually she likes to push the keys on the computer during a treatment. I don't have any suggestions on how to make it go more smoothly. Hopefully they will just get used to it. If I rock her and sing it does help a little bit.
thelizardqueen
New member
It has to be the taste of TOBI. I know I take two ampules of Tobra (The IV stuff in inhaled form), and it just tastes awful. If she were a little bit older, I would suggest getting her to suck on a candy during her treatment, but as she's only 4 months old, I'm not too sure.
thelizardqueen
New member
It has to be the taste of TOBI. I know I take two ampules of Tobra (The IV stuff in inhaled form), and it just tastes awful. If she were a little bit older, I would suggest getting her to suck on a candy during her treatment, but as she's only 4 months old, I'm not too sure.
HollyCatheryn
New member
This is just a suggestion, but perhaps you could consider taking a break for a while, maybe just a few months or a year until she's a little older. TOBI is awfully harsh on the throat. It tastes terrible and causes raw coughin in lots of people and a loss of voice. Some people even get ringing in their ears - tinnitis. It may just be too harsh for her and she's trying to tell you that she's uncomfortable. If she's crying so hard she passes out that is a sure sign that she can't handle it - whether physically or emotionally, at four months it doesn't matter much. If you want her to be compliant when she is older, you don't want her to associate her treatments with terror. There's a VERY big difference between an 18-month-old crying because you're making her do something she doesn't want to and a 4-month-old crying because she's scared or hurting or overwhelmed or uncomfortable. At that age it isn't willfullness or rebellion, it is her only way of communicating. If taking a break isn't an option, what about cutting back to just one a day or using some filters. Using filters (some hospitals do this with TOBI) helps to cut down on the bad taste and the harshness of the throat. It helps to minimize some of the side-effects. Go check out <A href="http://www.geocities.com/MurrensNatureMama/breastfeeding">www.geocities.com/MurrensNatureMama/breastfeeding</A> and click on the link to the drug safety list. There you can check out the side effects of TOBI and see if perhaps she is suffering from some of them. My heart goes out to you.
HollyCatheryn
New member
This is just a suggestion, but perhaps you could consider taking a break for a while, maybe just a few months or a year until she's a little older. TOBI is awfully harsh on the throat. It tastes terrible and causes raw coughin in lots of people and a loss of voice. Some people even get ringing in their ears - tinnitis. It may just be too harsh for her and she's trying to tell you that she's uncomfortable. If she's crying so hard she passes out that is a sure sign that she can't handle it - whether physically or emotionally, at four months it doesn't matter much. If you want her to be compliant when she is older, you don't want her to associate her treatments with terror. There's a VERY big difference between an 18-month-old crying because you're making her do something she doesn't want to and a 4-month-old crying because she's scared or hurting or overwhelmed or uncomfortable. At that age it isn't willfullness or rebellion, it is her only way of communicating. If taking a break isn't an option, what about cutting back to just one a day or using some filters. Using filters (some hospitals do this with TOBI) helps to cut down on the bad taste and the harshness of the throat. It helps to minimize some of the side-effects. Go check out <A href="http://www.geocities.com/MurrensNatureMama/breastfeeding">www.geocities.com/MurrensNatureMama/breastfeeding</A> and click on the link to the drug safety list. There you can check out the side effects of TOBI and see if perhaps she is suffering from some of them. My heart goes out to you.
<img src="i/expressions/iv.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"> We go for the big guns as well if my son cultures positive for more than 1 culture. You can do the IV's from home if your Dr. will let you.......and I get better results.
<img src="i/expressions/iv.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0"> We go for the big guns as well if my son cultures positive for more than 1 culture. You can do the IV's from home if your Dr. will let you.......and I get better results.