The "P" word already...

[anonymous]

We are just now coming upon our 1 year anniversary finding out our son (now 15 months) has CF. It has been an emotional roller coaster for me. I truly think with all we went through last year before we knew and RSV to boot, I just was in caretaker mode, not allowing a full realization of how much this diagnosis has broken my heart (not my will mind you). He is doing very well finally jumping up in percentile in both height and weight (still a little under weight) and our last clinic visit went well. I just got a call today and it turns out he cultured Psuedomonas (simple form). My husband and I lost it, as we were so hoping this would stay away for a long, long time. I realize it is not a sentence of chronic condition, but none the less it scares the crap out of me. Now we are faced with what to do. This is why I'm writing. For those of you whose babies/kids have cultured Psuedomonas, did you or your clinics treat it aggressively regardless of whether their were symptoms? If so, what do you treat with, oral or inhaled or combo? If not, what was the reasoning? He happens to be on his third day of a cold and now I'm wondering if it isn't a cold and more of a cough due to this new invader. We are leaning toward treating now rather than waiting to see if he goes through the cold okay. We are also very into natural and homeopathic support for him and have read about tea tree oil inhalation to irradicate bacteria. Has anyone tried this?

They also throughout starting clapping technique on Ben as well as a vest when he it two. If yours was diagnose before age , did you start these "preventative" treatments as well.

Thank you in advance
Jody Ben 15 month w/CF; Julia 5 w/o CF

 

[ehtansky21]

Jody,
My son, now 19 months, cultured pseudomonas about 4 months ago. My husband and I also had a time of tears and frustration. Knowing that you can't get a toddler to actually give a sputum culture, we knew that the pseudomonas could have just been in his mouth and not in his lungs. So.....we had another culture done a week after his positive culture, which came back negative. And 3 months later it also came back negative. At his initial pseudomonas culture, his CF dr wanted to treat it aggresively, but when he came back negative twice, she made the comment that it is true that it could have just been in his mouth and we'll just decide what to do if he starts showing some symptoms. Just so you know, my son only has digestive symptoms at this time and is on enzymes, his lungs are great. We are not doing any preventive care for him. I do not do perccusion on him, I just lightly tap his chest and back every night, so that he is used to that care for IF we ever need to do it. I am sure others would not agree with how we are going about his treatment but it feels right to us.

 

[anonymous]

Jody,

Hi- My daughter cultured Pseudomonas at 7 mths. She was having respiratory problems at the time, but the doctor was convinced it was a viral thing. About a month later, she continued to have respiratory problems (retracting, rapid breathing, coughing) and she began oral Cipro and Tobi inhalation. She continued with the Tobi one month on/ one month off. At one year of age, her respiratory condition worsened and she received her first round of IVs - Ticarcillin and Tobramycin for 14 days. She continued with the on/off inhalation Tobi afterward and did pretty well for six months.

Another infection at about 18 months didn't respond to the inhalation Tobi or oral antibiotics, so she did another round of IV's. She always does very well for a period after IV's. To make a long story short, she has cultured Stenotrophomonas various times, but has never cultured Pseudomonas again since that initial culture. She has even had two bronchoscopies with no trace of pseudomonas. She no longer does the Tobi.

My personal belief is that pseudomonas should be treated when first found. Studies have shown that if treated early, it can be fully eradicated at least for awhile. Knowing what I know now, I would have pushed more for the IV's initially. I have found aggressive treatment is best for Samantha. However, she has always had respiratory problems.

If your son is doing well, you might want to opt for the oral Cipro and Tobi cycle. I believe studies have not proven one method to be more effective than the other. If he does begin to show more respiratory symptoms and you don't feel the Tobi is doing the trick, then you can always try the IV's.

I know it's all very difficult to deal with, but you always manage to carry on. I can honestly say that as Samantha gets older (she's 2 1/2) she has been improving. The addition of the vest has done wonders for her also. Good luck!

Maria (mother of three daughters, the youngest, Samantha w/cf)

 

[Emily65Roses]

I always had the manual therapy (clapping, as you called it), but as I'm 21, there was no Vest when I was little. However, from before I can remember I always had chest therapy and meds (nebulized Pulmozyme started when I was 9, I think).

 

[anonymous]

Hi Jody,

I know exactly how you feel. We just passed the one year mark of our daughter being diagnosed and then two weeks ago we found out she cultured pseudmonas. We were really upset b/c she's been doing well so we thought she wouldn't culture this for a lot longer. Oh well. Now I feel really naive in thinking this.

Anyway, she is almost 4. She had a bronchoscopy to determine if it was in her lungs and it is. We decided on the inhaled TOBI first and if it doesn't work then we will do ivs. This is her first lung issue so far and it really caught us off guard.

We started manual chest therapy as soon as she was diagnosed. I think this is great b/c it makes us feel like we are actually doing something to help her. Her dr told us the vest is no more effective than the manual PT so we are sticking with it for now and will plan on getting the vest when she hits her teens. Please email me if you have any questions or if you just want to chat. There are so many questions that can be asked.......... My email is amyplymale@earthlink.net

Good luck! Amy
mom to Allie 4 w/CF and Betsy 15months w/out CF

 

[anonymous]

Our daughter is 15mos. as well and like most of the posts we were naive and thought she wouldn't get "P" til she was older. It of course rocked our world again too! Brinly i would say has a classic case of cf ~ needs emzymes and does cpt 2x day along with xopenex/intal , pulmozyne and now Tobi. She was in the hospital for ivs 2x last year and she was diagnosed with "P" at 8 mos. At first she did the Cipro 10 days and Tobi back to back for 2 months. It went away and like a post said for a baby to spit was impossible so we hoped it was just in her mouth b/c it went away for 3 months. But she has a spot on her lung that probably is the "P". And last month she cultured it again. So we are on Cipro 10 days and Tobi for 2 months again. I guess my clinic is aggressive b/c i have never heard of Tobi done 2 months straight? Last week we did another culture and it was clean....personally i am so frustrated she was not even sick when she got "P" My doc does not want to do a bronoscopy for the spot on her lung and is not worried about it b/c she is doing well clinically gaining weight and not sick. I just hate that she has "P".
I would be interested in what anyone else has to say about the tea tree oil inhaled?
Blythe
mom to Brinly15mo w/cf and Birgess w/o

 

[anonymous]

My daughter (2) cultured PA August 04 and October 04 (and had a clean culture in September 04). In August she was treated with Bactrim and TOBI. In October she was treated with Cipro and TOBI. She continued taking TOBI (28 on/28 off) until her last round in April, after she had 4 clear cultures and a CT Scan that showed no signs of it hiding in her lungs, we took her off it. We HATED giving her TOBI bc of the possible side effects but we also wanted to give her a good chance at getting rid of it (if it was truly in her lungs) so we did it. We are coming up on our one year "anniversary" of her last positive PA culture now and of course my stomach is in knots each time I am waiting for the results call...It is a tough call to make and it stinks that we have to make decisions like this but we will be doing this for many years (until our kids are ready to make their own decisions- which may be even tougher on us, lol).

About TTO, I don't have any personal experience but I do know several people who put it in boiling water and inhale the steam and/or use it in humidifiers. I think it might be a little tricky with a toddler but maybe your guy could handle it...

HTH&Hugs,
Kelli (mom of Sydney 2wcf)
<a target=new class=ftalternatingbarlinklarge href="http://members.tripod.com/sydneymyers-ivil/">http://members.tripod.com/sydneymyers-ivil/</a>

 

[anonymous]

Thank you all so much for your perspective. Can someone describe what is involved with the bronchoscopy? Is is painful?

Perhaps I will go in this week and verify if it is in his lungs. We are just concerned with introducing to many antibiotics too quickly and then ending up with resistent types. On the other hand I don't want it to stick around and see him take a dive in weight or energy as this is great right now. He is not acting like he has an infection, just a cold with cough and congestion. He has tons of energy and seems better each day.

These decisions weigh so heavily...this is the tough stuff I will tell you.

Jody

 

[anonymous]

The bronch didn't seem that bad for my daughter. She is 4. Her throat hurt when she first woke up and later on that same day but the tylenol worked. She had a fever off and on for the day but that was it. They day after the procedure she was back to normal. Good luck!

 

[anonymous]

My son and daughter were both diagnosed as newborns. My son cultured pseudomonas at his first year cf check up. I was shocked, he didn't have any symptoms. I thought it would be years before we had to deal with this. I REALLY pushed for the IV's, however, his doctor would not agree and wanted to try the inhaled tobi. Jack did inhaled Tobi for three months and an oral antibotic for a few weeks. He then cultured pseudomonas one month after his initial positive culture, but thankfully not in the eight other cultures we have done since in the past twelve months. I brought Jack in monthly to get checked the first six months after his clean culture to make sure it didn't come back. Jack seems to have bronchial spasms to Tobi after his initial three month of it, so we did not do the routine month on/month off.

Both Jack and Sophia have been doing cpt since diagnosis as infants. They were both on the vest by 18 months. They are delta 508, but seem to have few respiratory problems, mainly digestive.

I am a little leary about the bronchoscopy. Sophia had one when she was 8 months old in order to find out what was causing her vomiting spells. Turned out to be a milk allergy. But I been told that the bronchoscopy can introduce new bacteria into the lungs. So while it sounds like a great idea to go into the lungs and see if the bacteria is in there as well, but I would ask your doctor about the risks as well.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[kathiel]

My 23 month old daughter had a bronch in April and it absolutely scared me to death because we had already been thru the ringers with so many other things. While they were in they put in some saline to clean out her lungs. The only problems we had afterwards is that she had problems getting her O2 sats back up and instead of being able to go home 45 minutes after she came out of recovery, we spent 4 hours in the room on Oxygen but then she leveled out and everything was fine and we went home. They had told us to expect a fever but she never developed one.
Good Luck
Kathie

 

[anonymous]

MY SON WHO IS 4 YRS OLD HAD A BRONCH LAST NOVEMBER. AN HOUR AFTER HIS PROCEDURE HE WENT HOME, HE WOKE UP LIKE NOTHING WENT ON AND WAS PLAYING IN THE PLAY ROOM, THE DOCTOR CAME BY TO SEE HOW HE WAS DOING AFTERWARD AND WAS TICKLED AND SURPRISED HE WAS UP AND RUNNING AGIAN SO SOON. HE IS MY ONLY CHILD AND HE IS MY WHOLE WORLD, BUT HE IS A GOD SEND.

 

[anonymous]

It's me, Jody, to let you all know how Ben is doing. After much thought we decided to do the least invasive of the choices and do the inhaled TOBI for a month and then re-culture him frequently afterward to see how things go. We seem to be over the initial shock of the "P" word now and although our non-cf daughter is sad about the mask we are all accepting that this indeed may affect his lungs from time to time. We just started yesterday with the E-Flow machine (awesome nebulizer, only takes 4 minutes). Of course, he screamed the entire time! Our daughter (5 1/2) went under the table and cried for it to all stop. THen as I nursed him afterward, she said what we had all been feeling for the last few weeks..."WHy does Ben have to have all this stuff for his tummy and lungs. I just want him to be normal Mommy like other brothers are." My heart sank and the tears flowed. My husband and I just cried and held our kids close. We said so do we honey so do we. But, we he is normal and he just needs extra care from time to time like you do when you're sick. You take vitamins to make you strong and he take other things to make him strong.

It has been an emotional week and we know it will get better as he gets use to it. This was the week last year that we found out from genetic and sweat test that he had CF. It still seems impossible at times. It also happened to be my birthday Monday. I do have to say it was better than last year, but I'm hoping for non-CF news next year. ;-)

Just wanted to update everyone and thank you all for your perspective. It is times like these I'm so thankful for the internet and all of you!

Jody Ben 15 months w/ cf, Julia 5 1/2 w/o cf

 

[hopefulCFmom]

Hi Jody

I read your message and it took me back to May of this year. My daughter Emma (2) had a Bronchoscopy and they determined she had "P". I felt the same way you did. My husband and I cried and cried. But we have two other children so we try and pull it together, as hard as that is. My six year old Sophia (no CF) also mentions how she wishes her little sister wasn't sick and my 13 year old stepson (no CF) also gets scared and worried about her.

Emma was placed on TOBI, and Pulmozyme in May when she was 20 months old. She hasn't coughed since starting TOBI (thank God) and she has more energy and gained some weight. I don't know how long it will continue, I know they want to do some more cultures soon.

I'm coming up on our "anniversary" too on 10/13. Last year at this time I remember being so depressed. This year I feel much better. Hang in there. I'll keep you, and your family in my prayers. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Mayra

 

[anonymous]

Jody,

I wanted to mention a book to read to your oldest daughter Julia...it's "Mallory's 65 Roses." We got our copy from our cf clinic-social worker. It talks about a little girl w/cf and her daily routines including meds and playing hide and seek with her brother!! We also were having problems and questions coming from our 3 year old about her new sister w/cf and i think she was scared of all the medicine, doctors and hospitals etc. I felt like as soon as we read this book to her everything "clicked" for her and she wasn't scared anymore and very accepting of Brinly. Now she reminds me to give Brinly her enzymes!!
It really worked for us and i hope it will work for you too!! It sounds like Julia might need a little reassurance like Birgess did!

Blythe
mom to Brinly 15mo w/cf and Birgess 3.5 w/o