#1
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hi this is my first post and im sorry its going be a long one!

our son oisin was born 11wk pre term he has cld,rds,recovering from 3 sever episodes of bronculitis.he has developemental delay and possible cp. He also suffers from apnea and he cant manage his secrtions so we have an sat monitor and home suction.

at the moment he is on nutrini fiber which he drinks in a bottle. he cant manage to eat solids, he chokes and gags. if we do manage to get him to sallow it his body wont digest it and he's left in agony and it plays havok with his bowels.

we are waiting to see OT,pysio and speech therapist. We are going to the royal sick childrens in belfast to see a specialist on monday. he is also getting a videofluoroscopy done on monday.

i really dont know whats going on. no one will commit themselves to a possible diagnosis. his consultant who is great when it comes to oisin's lung probs just tells us to wait and see. i dont know anyone who has gone through anything like this.

Our GP has said that oisin has CP but when we ask anyone else they just say the development team will give us a diagnosis.

is anybody going through or have gone through this. we are so worried for our wee man. we just want him to have as normal a life as pos and to get the medical help started asap. but we cant get any answers???

also has any1 heard of a connection between cld and babys being unable to eat. i did read this somewhere but cant find out anymore info.

sorry for the long post but i did warn ya lol

thanx
emmy
#2
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Hi there and welcome to the forum!
Just out of curiosity, what does CLD stand for? I know it is very common with kidney disorders for children to not eat solid foods. My son has a condition which affects his kidneys, I used to have to puree his food until he was about 18/20 months, even now to be honest he only eats softer solid foods, he doesnt eat meat except sausage (because its softer) and his veggies have to be really soft!
I'm not entirely sure why it is but I have read a few times even in paper articles about kidney problems and solid food being an issue. My son was also fed nutrini, although I had to swap it from the fibre one to the other one because it gave him awfull diarrhea. He had his through a gastrostomy though, on a pump as initially, he wouldn't really eat at all and had failure to thrive! I also found he wouldn't really eat due to chronic reflux. He had RDS as a baby and was in special care for 3weeks with bouts of apnea which they told me was because of the reflux, he was effectively holding his breath in pain due to what we know as heart burn! He wasn't pre-term though so there may be some connection there with your sons feeding problems that aren't associated with my sons!!
Hope you get some answers soon
Lucy xx
#3
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thankyou for replying.CLD stands for chronic lung disease also know as bronchopulmonary dysplasia. i hope you dont mind me asking? at what age did your wee 1 start getting fed through a gastrostomy?
oisin's consultant has commented that he wouldnt be surprised if oisin was never able to eat ( first we'd heard! we had always though that it was developmental delay)and if he could we wouldnt be starting anytime soon?

the problem now is that oisin has begun losing weight and not takeing enough bottles in a day to meet his daily requirement.
how long who this have to go on for?
do you know of what options there are for this situation?
#4
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My son stopped putting on weight and growing at 6months but we didn't get a diagnosis until he was 13 months old. It was about 1month of trying to improve his eating before they recomended pump feeding over night. At first he had a Naso-gastric tube to get him used to the pump and to assess how well it helped, then he was put on the list to have a gastrostomy button. He had the NG tube from april 2008 and then the gastrostomy button in the September of 2008 so there was probably a 6-7month wait. The pump feeding worked really well, its difficult for them to tolerate at first and you have to work them up from a small amount to the larger amounts. Euan started on about 2/300mls and eventually worked up to 1litre of nutrini over a 10 hour period. His weight gain was incredible, the only thing i did find is that over night feeding kills any appetite they do have during the day, but if your little one doesn't eat at all then thats not really a problem for you.

Euan was ill for a few weeks so I had to take him off the pump as he was vomiting it all up, I noticed that when he didn't have it, little by little his appetite came back, that is how I began to get him to eat. He still has to have the pump on though for fluid intake (as his condition affects his renal function) and his coctail of medication, so I still use the button even though I do not use the feeds now.

Have the doctors looked into whether he has a problem with swallowing? as it sounds like he may have a weak muscle not allowing him to swallow properly, this also causes speech delay as it is the same muscle used!!! Euan had a speach delay from the NG tube being put down but it is starting to recovering now (although it has taken about a year).

I would say that probably with his weight loss they wouldn't leave him too long not eating. If he starts dropping off the centiles they will probably look to intervene. Pump feeding may be an option, it was the only option they gave us but that was because of the fluid intake aswell so I am unsure whether there are other options available to you.

I will say though, I found tube feeding invaluable, Euans energy levels increased greatly (he also had delays in his development but we are unsure if that was due to energy levels, the rickets he had or muscle weakness caused by his condition). Have you ever seen a mic-key button?? I could post you a picture of eauns button and pump if you like, they do come with a great need for storage, as the bags have to be thrown away after each use so you have one for each day and they are not small. They all come with the delivery monthly from nutricia!

Hope that helps Smile

Lucy xx
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hi thanx again for getting bak to me.

how did your wee 1 cope with the op and recovery? if you dont mind sending me a pic? it would help my understanding of how it works?
oisin is getting his tests on monday to see if it is a swallowing prob. it took months to get him to drink out of a bottle so i think it could be a swallow prob but the docs are unsure as he cant digest his food? his weight has dropped since we started the nutrini, he was on nutra prem 2 plus duo cal. but he wasnt getting enough so we had to change. he's just not taking enough and i cant make him. did you find that the nutrini really filled your we one up or do you think it was the night feeds themselves?

thankyou i really appreciate you help

emmy xx


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