shunt blockage again

[ainemc]

So Caitlin's shunt blocked for the 2nd time, we noticed over the weekend that her fonatelle was rising but her head circumference didn't increase and the only symptom she showed was she vomited once on sunday and once on monday. The nurse said that the reason why it blocks is because the fluid is very sugary and solidifies in the tubing which prevents the fluid from draining. I'm really worried now that the tube from her shunt is going to block every few months. It blocked at the top of the tubing both times. Was just wondering if shes at more risk of it blocking again because it has blocked twice in 3 months or is it just by chance that this happens? Its really scary because both times it blocked she's been bright, alert and very happy. I'm afraid of not noticing it and it causing damage. We just came home today and she has recovered well thank god, but her hair that had just grown over the shunt was obviously shaved off again and its really swollen at the minute, so hoping its 3rd time lucky for us...I just feel so guilty that she has to go through all of this and i hate it so much when she has to be fasted for surgery, her cries for food break my heart when im not allowed to feed her :-(
Sorry for rambling on, just need to let off some steam!

[Summer25]

I wouldn't worry about the occurance. Sometimes it just happens. I had 3 before the age of 6 months and then nothing until I was 10. I hope everything goes ok!

[LisaJoy]

So sorry you've been through this again! Hope she's back to her usual self quickly.

[tessa3598]

I hope Caitlin is doing better!! My daughter had the same exact thing happen for the 1st 2 1/2 years. It always got clogged up and we had to replace it twice. It sounds like others are the same way. It doesnt make it any easier though. Im so sorry you have to go through it. From what Ive been hearing and from my daughter, it seems like with age it calms down some, so hopefully for Caitlin it will be the same.The hair thing was huge for me too. Just as it starts growing back, they have to shave it again. :( Wishing you the best, your in my prayers :)

Sarah

[ainemc]

Thanks for your replies, i'm hoping that it will settle down. The day after surgery the clowns came round the hospital dressed as doctors and she got all excited and was smiling and laughing at their little toy duck, she is so brave, i wish I was as brave, it takes me everything not to refuse to let them take her away to operate. I know it has to be done, but its so hard!

[Ziggy]

It's so hard, isn't it! Sweet pea had a totally asymptomatic shunt failure at 3 mo old, made me so paranoid ever since then! But no failures since then.

[ainemc]

Caitlin's soft spot started to get less softer on sunday and yesterday it looked like it was bulging a bit so when i took her to physio yesterday i asked to see a nurse who advised me to go straight to hospital as it looked like a shunt blockage again. So off we went, i was sure it was blocked because although she wasn't showing any other symptoms, she never does when her shunt blocks (except vomiting twice the second time it blocked). So doctors assessed her said yeah looks like the shunt has blocked, neuro came along, felt her fonatelle and said it feels tense so she got her bloods taken and a line put in to prepare her for surgery and she went for her ct scan and xray to see were it was blocked and how enlarged her ventricles had become. The doctor came back and told us both the xray and ct scan had come back clear, there was no blockage and no enlarged ventricles. He and the consultant didn't know why her fonatelle was bulging when there was no blockage. They even said they thought it had been blocked and were surprised they had come back clear. So we got sent home, but her fonatelle is still bulging but shes otherwise fine. Caitlin's dad think's it might be teething thats doing it but ive never heard of that, has anybody else? Anybody any ideas? Thanks!

[Jess&Madi]

Not sure where I heard that, but yes, I've heard teething can make a fontanelle bulge. Also heard constipation can do it 2. Best of luck:) PS. Glad 2 know someone else shares my hate 4 passing my baby over 4 surgery. Worst feeling ever!

[Precious40]

I hear you loud and clear....unfortunatly. Blake is at Texas Children's once again. He had a revision April 5th and now we have been here for 10 days with a drain because of an infection in the revised shunt. He has surgery in the morning for his 3rd shunt. This time he is getting a programable shunt. I am not sure if this will be any better.?! I will pray for your baby girl. Just know you are not alone. Blake was born January 31st and as I said this is his 3rd shunt. I to wonder is this going to be the "norm"? God I hope not.

[cadon's mum]

Cadon is also on his 3rd shunt which "TOUCH WOOD " is now almost a year old!!! And yes his fontanelle bulges when he is teething and also when he is constipated I have sat in the hospital thinking that his shunt was blocked for both of these reasons.

[ainemc]

Jess&Madi - It is the worst feeling in the world letting your baby go for surgery, knowing you'll allowing them to go through something thats going to leave them in pain, i feel so so guilty when she comes back and she's crying and in pain. But it needs to be done, though Caitlin was in hospital throughout the week possible shunt blockage again, thankfully she was ok but they tried to take her blood for the 2nd time and I refused until her scans came back (because if they're clear they don't need to take the blood) as they can never get blood from her and it always take several attempts which leaves her really distressed. The poor little mite has bruises on both arms right now from their attempts to get blood, it feels really unfair but our kids are little fighters :-)
Precious 40 - Sorry to hear Blake is unwell again and your going through this again. If only there was a miracle cure to ensure these shunts will function for many many years! How is he now and how are you? A programmable one is better because if they need to adjust the flow for the shunt they can just use a remote control thingy that controls the settings of the shunt, rather than having to do surgery to adjust it. I wanted one for Caitlin but I don't think they're available on the NHS. I hope it's not the norm, i keep saying third time lucky and hopefully for our babies, it is!
Cadons mum - Thanks for replying, thats good to know about teething and constipation, Caitlin is often constipated and is really teething at the minute. Its just that it was bulging pretty much constantly which is what worried me. Do you feel more relaxed about his shunt now that it has lasted for alot longer than the others? Not a day goes by were I don't contemplate that it might be blocked, any crying, irritability or if shes sick sends me into panic mode, and i would love to know if its always going to be like this or do you relax more when its not blocking every other month.

[cadon's mum]

It use to be the only thing on my mind, i even carried a tape measure round in my pocket and measured his head throughout the day (mad or what???) Any change in him, however slight i was straight down the hospital just to make sure. His last revision traumatised me and has taken me a long time to get over it, One minute he was fine the next minute he was floppy in my arms, i am so glad that i was in hospital at the time as the nurses literally cut his clothes off in front of me and rushed him to theatre. Almost a year on and i can say it DOES get easier i have lots of days when i don't even think about it and i'm no longer waking in the night to check him. I am far more relaxed about everything now but must admit that i still don't like to travel too far away from his neuro unit so holidays are going to be taken in the U.K for a little while longer, and we still have the hospital bag packed by the front door although i did re-pack it the other day as it still had 6-9 mnth things in it and he's now almost 16 mnths. Really hope that you start to relax a little more soon too!!! xxx

[ainemc]

Hey everybody,
Was just wondering what your thoughts are on this...
Caitlin's fonatelle once again started bulging around 3weeks ago, we took her down to hospital as her fonatelle was really tense, but got sent home, only to go back a few days later as it was still the same and they admitted her for observation. She was sent home the next day, still with a bulging fonatelle but no other symptoms. Three weeks on and its still bulging! It gets tense then goes soft but is always bulging. She is a little grumpier than usual at times but she has a tooth that is just coming through and once she gets Capol she is fine and i figure if it was hydrocephalus that was causing her to get grumpy Capol wouldn't help?
I'm just starting to panic because we are going on our holidays for two weeks on Friday and we will be in a village were the nearest hospital is a few hours away.
The hospital won't give Caitlin any more scans because she has been exposed to so much radiation already through having so many scans and they won't do it unless she becomes unwell, which she isn't. I just don't understand why her fonatelle won't go down if her shunt isn't blocked! Any advice would be very much appreciated. Thanks :)