Dear All,
  Kyle has had as many chest infections since last year as I can remember and they seem to be on a 3/4 week cycle, on may occasions enough to hospitalise him as with many TOF children. It has been suggested that it could be reflux related as a pH study last year showed severe reflux. However if he is still refluxing he most be able to tolerate it alot better as he is like a new child in that no screaming since coming off dairy, eating well and a good weight gain. He is on ranitidine and gaviscon for the reflux but unfortunately they want to repeat the pH study next week as the original one was done at another hospital. He is going in for an MRI for his back next week so while he is out they are going to locate the pH monitor. They mentioned the Nissen if it is as bad as it was last year and I am extremely worried and nervous about next week as I really don’t want the Nissen! Has anybody else experienced lots of chest infections with an explanation other than reflux?

Kind Regards
Suzanne

Hi, can I ask whether you have been given antibiotic cover?  My son had awful problems until he was two with seemingly constant bronchiolitis and croup symptoms. It was so bad it interfered with swallowing [as if he didn’t have enough probs :(] and he would vomit from the strain of coughing. Finally a sympathetic paediatrician put him on 5ml a day of cefalexin to try and stop bacteria infecting the mucous that was so sticky in his upper respiratory tract , and also automatic scripts for coamoxiclav that I kept unmade up in the house, and could give myself when I could see another inf had hit him. I cannot tell you what a difference it has made for all of us.

Hi Suzanne
hope Kyle finds a solution soon. our little boy is 7 now and every year has chest infections. he also has silent reflux and had endoscopy studies done recently and they discovered a hiatus hernia, he had been on Losec twice a day but they have since taken him off it hoping that he can just take normal Gaviscon and rennies. He was recently given the QVAR 50 (preventer) inhaler and it seems to be working really well according to the peak flow results. he only takes ventolin when chesty. The nissen was also mentioned to us but they want to see if he can manage with doing this for as long as we can. it’s apity they can’t get the last ph results e-mailed to them.best of luck and chat soon.
p.s the only antibiotic that helps clear his chest is Klacid or Klaricid but since stating the preventer i have noticed he is not as chesty. xx julie

Dear All,
Thank you for your replies. Kyle had a cough which started last September and continued to get worse along with vomiting,loosing weight and 3 ‘dying spells’. He had a bronchoscopy last year following the 2nd ‘dying spell’ and they said there was no tracheomalacia. However following months of misery and a final ‘dying spell’ we went private and were told he had severe tracheomalacia for which he had an Aortopexy in Feb at GOS. In general he is very well, happy and eating well except for these chest infections! my doctors and local hospital are not very good at picking up on them and I usually get sent away being told’his chest is clear only to a few days later need an ambualnce to hospital. This has happened on many an occasion. They always seem reluctant to give me antibiotics even bearing in mind Kyles history! He has had a mixture of amoxicillin and amoxiclav but the longer I take to get it the longer it takes to clear. I am so so worried about the Nissen as he is doing so well.

Kind Regards Suzanne

Suzanne it makes me so cross to read what you are going through! It all sounds so familiar. I could have told them myself that Dan’s lungs were as sound as anyone elses, the infections were settling in the upper respiratory tract where all the thick mucous was gathering.
It was exactly the same for us, and I was really frightened that his lungs would become scarred as he had to seem almost unconscious with the effort of coughing before he got antibiotics.
This of course doesn’t even begin to take into account the terrible [and avoidable] strain on your family of all the late night emergency visits and weekend , out of hrs visits etc :(

The GPs were so reluctant to take a lead position and come up with a plan of care, and although I thank God regularly for the skill of the surgeon we saw, he didn’t see himself as ‘maintenance’ either. There seems to be a real lack of provision here for some of us.

When I finally got my paediatrician’s appt, and got the longterm antibiotic cover, it really did change all of our lives. Dan no longer got so many complcations after colds, and if he did, as soon as his temp went back up and the awful cough started again, I could start coamoxiclav immediately, even if it was 3 a.m., and from then on we no longer had to deal with the constant bronchiolitis that followed every single virus. Having the paediatrician take the role of lead healthcare provider was a life saver for us, as we no longer had to rely on the various dispositions of the different locums/gps/duty drs we were seeing with no continuity of care or communication.

We were also told Dan had no tracheolmacia or even dismotility of the oesophagus with his 2nd contrast study, despite the fact that it was extremely evident on the first, and I KNEW from seeing him at home the probs were still there. Thankfully they have lessened as he grew physically bigger, but reflux and spontaneous regurgitation are now worse :( Swings and roundabouts I suppose.

Dan’s constant infections delayed his whole development by 12-18 mnths. He almost had to go to a special nursery for children with language delay.  When we finally got the care he needed and he was not constantly fighting off the symptoms he thankfully caught up all that he had missed, a massive relief.

http://www.tofs.org.uk/index.php/what_is_tof_oa/common_problems/chest_infections_and_wheeze

I got so frustrated I ended up printing this out, and highlighting everything on the pg I felt was relevent to Dan [including the bit about superinfections and ab cover] and made several copies, giving them to my health visito and my GP and sat and watched then reading. [ They hadn’t actually looked TOF/OA up themselves :-(]
I had made a specific appt with the GP just to talk about a coherent structured plan of care that would be in his records so that no matter who we saw, the care would be continuous.

This was what prompted her to finally refer us to the Paed clinic, and since seeing him,  we really haven’t looked back.

Dear All,
  Thanks again for your replies. I have yet more bad news and a pH study carried out this week at GOS has revealed that Kyle’s reflux has in actual fact got worse and that it has gone up to 27% refluxing 24 hrs a day in no matter what position especially when lying down and after eating. The nurse did not seem very hopeful of avoiding the Nissen however we have an appointment to see our consultant at GOS next Thursday the 18th to discuss the results. Kyle had the probe inserted while under general anaesthetic as he had an MRI scan for his back and he was really sick that night with the probe down. It makes us wonder if it would have been better going down while he was awake as the GA made him poorly. If he is refluxing that bad it is silent reflux as he shows no signs of pain or discomfort and is a very contented happy little boy with a good apetite. He has not been sick since his Aortopexy in Feb so this was really out of character for him. I am even more worried about going next week now as I am so scared of what they will say. If it was a positive that the reflux was causing chest infections then I would be much happier however I am very unsure and very down at the thought of im having the op especially as he is having major surgery next year for Scoliosis.

  A worried and very unhappy,sad Suzanne

Hi Suzanne,

I wondered whether you had any further news?  Our son Jack is 2 and a half and this year has suffered a lot more with colds, coughs and chest infections.  His lung was badly collapsed after the foker technique failed at approx 6 weeks of age, thankfully his surgeon still managed to join the two ends and we were told is lung would take time to recover but would get stronger etc as he grew.  After a number of x-rays and being referred to a respiratory specialist, his lung seems to of deteriorated. (not that he is showing any physical signs of less capacity)  He has now had a CT scan and we are waiting for a PH study. 

Jack’s consultant seems to think there is a high possibility of reflux, but Jack again has never shown any physical signs of reflux and I am also concerned that he might suggest a nissens.  Jack currently has anti-relfux meds and has had numerous antibiotics, most recently a 5 day stay in hospital were he had the “domestos” equivalent of antibiotics by IV as they weren’t sure what they were treating! 

We now wait for the consultant’s view of the CT scan and a date for the PH study.  Amazing Jack has recovered really well and seems completely unphased by it all! 

Emma

Dear Emma,
  Well I have a mixture of good and bad news. The good news is that we have seen a respiratory consultant at GOS who has highlighted other issues that could be causing the chest infections.He agreed to try a continuous dose of antibiotics through the winter(profalactic) which means 2.5ml of Eurithromax Monday,Wednesday and Friday which appears to have settled things so far. I actually wonder how many of them have been full blown chest infections and not as I believe upper respiratory issues. The last one was 4 weeks ago and he was seen by 3 docs (one even let me listen to his chest and sure it was clear). Why then did they all tell me different things and I know it was in his airway as he had a stridor aswell.Anyway cleared up by antibiotics eventually.However during this illness he had a fall which resulted in him stopping breathing and a blow to the face was not enough I ended up giving his breaths again. Seen by GOS afterwards and they are not sure if it is the reflux of a combinaton of the fall and breathing issues caused by the infection so guess what, yes another pH study in 2 weeks time and if the results are as bad as last time then an op. I am worried sick and really don’t want Kyle to go through this. He is doing really well in every other aspect and has gained lots of weight of late and I am happy with his progress.
  Not sure if that is of much help but hope so. Look forward to hearing from you with some good news! 

  Regards
      Suzanne

Hey,

I am 14 and I know that when I was a baby/toddler I had chest infections on many occasions. I know my parents kept in contact with the hospital/doctors. So know if I have a chest infection I have to make sure I get antibiotics

Ellie
x

Hi all Bernadette had many chest infections for years, hospitalised everytime, iv antibiotics, collapsed lungs 3 times.  She was 20 mg of losec for many years until she got an enlarged liver a side effect of losec, she weighed just 3-6 kg.  When she was 3 I tried many different products and she is now 9, they told me should always have lung problems, and have terrible reflux.  She is a healthy 9 year old, she has been hospitalised once in 6 years with pneumonia, she takes no reflux med and has a dilatation every year and has never had any burning. Should any one wish to see how we accomplished this please email me .(JavaScript must be enabled to view this email address)

It is my wish to help as many tof parents as I can.  We were in hospital every 3 weeks for 3 years, know how hard this is for parents.

We have a very good relationship with our doctors and surgeons, it has actually been quite a journey.

Blessings to you all
Delyse

Hi all,

Not sure where to post my message but Jack is in hospital again, infection in the left lung (the right one is the partially collapsed one - see my earlier post).  Happened pretty rapidly, yesterday started coughing and by 2.30am we were heading to A&E with rapid heart rate and breathing.  He is in hospital on IV antibiotics, my husband is staying with him tonight.  Really worry about his future health, he seems to get hit really hard and he is already on low-dose antibiotics and the only option seems to be IV when he is hit by an infection. 

He is 4 in May and I just feel really worried.  Sorry as I feel like I am just having a little rant, we are really positive for the majority of the time but you do question how much their little bodies can handle and will they be ok.

Emma

Emma so sorry to hear about Jack, really hope he pulls through fast with no major problems in the future.  I know the feeling of wondering how much their little bodies can handle. Devin is 3yrs in May and has TOF, although it is the middle of summer here he has had a really bad cold over the weekend and sounds like he choking at night, sadly he had to wait another two days to see the dr to see if there is anything they can do.  As where i got his cold and now have a major chest infection even though Devin sounds worst than me so that doesnt make much sence to me.

Hope Jack has a speedy recovery.
Jo&Devin;

Hi Emma
Sorry to hear about little Jack. Bernadette had exactly the same, patial lung collapse and went from fever to critical within 10 mins, she got bacterial pneumonia 9 times when she was 3.  Hospital IV antibiotics after 4 days she would be a different child back to her usual self. 

What I did was get my own stethascope and asked the doctors to explain to me the difference so I could determine whether she was getting sick or of it was just the tof cough mixed with her food or saliva.  This helped me alot, she is now 9 and has been hospitalised once with pneumonia since.

The are amazingly resilient, so stay positive as hard as it becomes at times, I know, but there little smiles and quick recovery will keep you smiling.

Delyse x

Hi,

Jack came out of hospital after 36 hours and as you said Delyse about Bernadette he was back to his normal self whilst David and I felt like we had aged another 10 years!  They are amazingly resilient but going into hospital is so hard and it brings such a rush of emotions, but we are once again through it and will remain positive, hoping that spring is around the corner!!! 

Emma x

Oh Emma I so happy all is wonderful in little Jack’s world.  Glad I was able to reassure you.
Cheers
Delyse x