firm fontenelle in heat and when sleepy??

[XoBLoNDiE85]

ok so im confused....hoping im just totally picking her apart and over analyzing but it seems to me that the past 2 weeks or so (since the major 106+ heat wave) Hannah fontanelle gets firm here and there never stays firm but does get firm. It also tends to happen when shes sleepy aka fussy. What does this seem like to you. She has no other shunt malfunction symptoms other than what i stated....??? Her neuro has always told me that they fluctuate so thats why im not freaking out completely but would like to know what you guys think. She is right now asleep next to me and when i feel her fontanelle its caved in (like usual) but like i said get firm from time to time. Ok enough rambling....

[XoBLoNDiE85]

and now it is 6:05, 3 1/2hrs since my last post and its still sunk in like its suppose to be...what do you think. I emailed her neuro he she call back by tomorrow. we shall see....pray for us!

[cadon's mum]

That was the only sign i had when cadon's shunt got blocked the other week, he was absolutley fine, but his fontanelle kept going intermittantley hard. I really did'nt think anything was wrong with him at first, but as i am so new to all of this i took him to hospital anyway as we have open access to the children's ward. The doctors there did'nt think anything was wrong with him either so they waited 3 days to do an MRI & contact his neurosurgeon. As soon as the results were sent to him we were in an ambulance within minutes sirens blaring the whole 150 miles to his neurosurgeon (very scary!!!)
Cadon's shunt was totally blocked. I'd get hannah checked out anyway. Will be thinking of you.!!

[joybell322]

definitely could be nothing, but when lizzie's shunt went 4 years ago now, the doctors put a device on her that looked like an antenae (pcp or something). it tested the pressure in her head. amazingly enough, she was fine during the day, but the moment she laid down at night, her head hurt like crazy & the pressure went up. her neuro said this is normal when a shunt is malfunctioning. she did end up with a revision.

we'll be praying! let us know.

[XoBLoNDiE85]

so appt with her neuro tomorrow at 3:15. i have cried so much today i dont think i have any tears left ugh! This isnt her first revision but i just hate it!Its so hard to hand you little baby over to the OR! i feel so helpless. Thanks for all your prayers =) im praying for no complications and for time to FLY! my poor hannah....maybe she'll just need her shunt adjustedwouldnt that be awesome!

[valerie]

Thinking of ye, hope it goes ok xxxx

[joybell322]

does she have an programmable shunt? it's definitely a possibility that she just needs to be dialed down. liz has had problems 3 times now, but has escaped surgery just by being dialed down. she's at 90 (whatevers) now and doing great.

still praying! :happy065:

[XoBLoNDiE85]

Yes she does have a programable shunt...so maybe he can just adjust it. Im so stressed and trying to chill but its not easy as you guys know exactly how it is! She has had it adjusted before and that bought us some time before her last revision but i dunno whats better because we still ended up in surgery. Ill keep you posted. :kleenex:

[XoBLoNDiE85]

WE ARE HOME!!! Hannah is just fine!! Cahan (neuro) said her head is fine. He measured it first and its fine then ordered a ultrasound STAT and her ventricles are small. But i still wanted t oknow why its doing what its doing with the up and down deal he said shes growing and her brain is as well....sounds crazy but thats what he said. So now i am waaaay relieved. I feel dumb for freaking out now but Im glad i went and can now relax and know that my baby is just fine. Thanks for all your prayers and support :sign0008:

[joybell322]

so glad to hear about hannah. we've never met, but i was actually very worried!

we've been to the doctor a thousand times to find out that everything was fine. i always felt a little stupid, but it was always such a relief to know she was ok!

i'm so happy for you & hannah!

[XoBLoNDiE85]

Oh thanks...i know we have never met but how we talk on here makes it seem like we do. =)

[Precious40]

I am worried Blake's shunt is failing. His soft spot is a little more firm than it was a few weeks ago, but the neuros nurse said that it was fine (over the phone), because it is still soft when he is sitting up and calm, and he is showing none of the symptoms. He is eating and sleeping normally, and no throwing up or grouchiness. But last tuesday the lady from ECI measured his head and it was 39cm. We took him to his regular pediatric dr. tuesday and he said it was fine. Hubby and I measured on thursday, "because it looked bigger" and got 39 1/2cm. So we took him to our other pediatrician, and he said that it was fine and that he was just growing, but everything looked good. Then Saturday we measured again and got 40cm. What the heck? Is that normal? His head still looks like its getting bigger. He is growing fast, he just grew out of his newborn clothes in like in a week. Please help!

[XoBLoNDiE85]

have you taken him to his neuro...i have done that many times just to be safe...we ended up in surgery once but the others she was fine and i felt so much better being able to see the ultrasound and know that everything was good

[Precious40]

He has not seen the neuro for this. I talked to the neuros nurse and she said that he was fine because he was not showing any other symptoms. But I did call again today and got the answering machine. I left a message about my concerns, but did not hear back from them.

[ainemc]

I would take him to the hospital, just to give yourself peace of mind! Caitlin didn't show any symptoms when her shunt malfunctioned, she was bright and happy and the only reason why we went down to the hospital was because her head circumference had increased by a cm in 5days. Unfortunately scans showed her shunt had blocked. Her fonatelle was a little more filled when we went to the hospital but it wasn't bulging. Blake will probably be fine, hes probably just going through a growth spurt but you will feel lots better if you get him checked out. Hope all is fine! :-)

[Precious40]

We are going to Texas Children's tomorrow. We are seeing the ortho dr. because Blake's toes are swollen under his cast. The cast was rubbing the tops of his toes so we trimmed the cast to find his little piggies very swollen. After the ortho appt. we are going to try and push the neuro guy into just "checking him out". I did talk to his nurse again today and got the same run around, " if he is having none of the symptoms, and his head is still somewhat soft then he's probably fine". They said that his head measurement was spot on for his age and to call if he get cranky or starts throwing up or a more firm soft spot. UGG! They said that if his soft spot is still sunken in then he is fine. I told them that it is not sunken in but springy and soft when you push it, and they still said it was fine. Will the worries ever end??!!?? I know...NEVER, i'm a mom!

[Precious40]

Ok, so thursday we went in to check out Blake's toes. The cast was too tight and his foot was swelling. They removed the cast and treated the sores that the cast had caused and wrapped him up again...not so tight. But today it is slipping off so we go back wednesday to have it "fixed" again!! UGGG! Anyway Thursday we had the orthopedist page neurology to look at his shunt and they admitted him right away for shunt failure. The surgery went well and we came home saturday afternoon...three days in the same clothes...yuck! I am freaking out about a shunt failure at only 2 months old. Is this a sign of things to come? I hope not.

[Summer25]

Having one shunt malfunction at 2 months old means nothing. I had 3 done at 6 months old and was fine again until the age of 10. So, I wouldn't worry about it. However, keep an eye out for infection now that he has had one.

[ainemc]

Sorry to hear it did turn out to be Blake's shunt but at least its sorted out now and he is on the mend. Apparently shunts are more likely to fail in the first year of life but it can happen at any time, I don't think because his shunt has failed once increases the liklihood of it happening again. My daughters shunt blocked when she was 2months old too and we've had no problems since her revision, mind you her shunt revision was only two months ago! When she had her revision the doc told us a shunt could block 3 times in a month and then the person could never have a problem with it again, its just one of those things and we just have to be aware of the symptoms and signs. I don't know about you but I have become so paranoid about her shunt failing - every time she isn't well I am in a panic and rushing her down to the doctors, I think he is sick of the sight of me!

[XoBLoNDiE85]

Hannah had her first revision at 4 1/2 months old and i thought the same but she has been fine since and she will be 2 in July !