My little baby needs a cat scan. Okay, she's 18 months....not that little. But I'm really starting to stress out about it. We almost refused it because we've been through lots of medical scares with her (preemie and relating stuff) and I usually know, KWIM. But we just can't cause she has all these little things wrong with her and if they are what they think (hydrocephalus) then it's treatable but if you don't fix it, it's really serious.
I'm really upset about it. I just have a bad feeling. Not about the hydrocephalus but about the actually cat scan. I keep thinking something is going to go wrong.
It won't right? Lots of kids have had anestetic (no idea how to spell that) and been fine, right?
It just seems like everytime things are going well for her and we think, wow maybe she is going to be okay they give us a kick in the head. I know that doesn't make sense, it's not the Drs faults.
Augh. I'm so....frustrated. I don't know. Thanks for reading. I just needed to get these bad feelings out. I can't talk to DH, he really doesn't want to do the scan and if I show hesitation it will freak him out even more.
Maggie
jessicap
05-16-2007, 08:26 AM
neither of my kids have had to be sedated for a CT scan, but Ayden my 3 year old, when he was 4 months old had to have surgery, and was sedated for that. It was scary as all get out for me. BUT he pulled through it and was absolutely fine. He even left the hospital that same day, within hours of coming out of sedation and was normal Ayden. It was as though nothing happened to him. I thought I was going to have a panic attack and die....but really it was okay. I know how you are feeling and I am sorry that you have to go through this. This is so hard. But she will be fine. :hugs:
fostermomcchr
05-16-2007, 09:20 AM
I know it is scary to have your LO go through all that, but it really is for the best and the docs/nurses are there to help and do what is best for your LO. My oldest had surgery 3 times in his life, my youngest once and I have had 5 fosterbabies go through sedation for various medical tests-yes, it is scary, but all had wonderful recoveries with no issues resulting from sedation and the tests all were necessary for further treatment. If you go in with an attitude that everything will be fine and don't let your LO know you are upset, then she will do much better and feel secure in knowing YOU feel it is ok.
Weezy6703
05-16-2007, 10:24 AM
I agree with pp. I had many cat scans as a child (Had a shunt/catheter put in at 4/5months old)...anyhow after a few surgeries and repeated check ups, several ct scans involved and I don't believe they sedated me either.
maggie_may
05-16-2007, 12:24 PM
Thanks you guys. Sometimes you just need someone to say it's going to be all right, KWIM? I don't usually get so worked up about her stuff. I just felt like everything was going good so this kinda snuck up on me.
munchkinflame13
05-16-2007, 12:27 PM
Do they have to sedate her for the CAT scan? What is the sedation for? To keep her still or what? I am sure she will be fine, but if you are worried, you might want to ask them or your child's pediatrician if there is any alternative to anesthesia.
maggie_may
05-16-2007, 02:05 PM
Yeah she has to stay still for 30 minutes while they scan her brain. I asked if I could just try to feed her and have her nap but they can't rely on that. I even said I'd lay in there with her.
munchkinflame13
05-16-2007, 02:13 PM
Yeah she has to stay still for 30 minutes while they scan her brain. I asked if I could just try to feed her and have her nap but they can't rely on that. I even said I'd lay in there with her.
That stinks, but perhaps they are just trying to ensure that your DD only has to go through the cat scan once. Will they let you be there when they administer the anesthesia? Will they let you be there while she gets the catscan?
yellowcampcat
05-16-2007, 02:30 PM
:hugs: It will be ok. My sister has hydrocephalus. She has a shunt that was put in when she was just months old. The dr.s know what they're doing.:hugs:
SandyG
05-16-2007, 06:19 PM
hugst o you :hugs: i hope and pray the cat scan goes ok :pray: :goodvibes:
GoddessWifeMom
05-16-2007, 06:35 PM
Just want to offer :hugs:
I wont post our experience with DD's ct scan because it will only frighten you more, DD did end up having anaphalaxyis to the Chloral hydrate (the sedative) and the contrast medium (the dye they use).
It was a horrifying experience and both DH and I said never again to a CT.
Sorry Mama I know how scary these things can be. :hugs:
carleyann'smommy
05-16-2007, 07:06 PM
Hi just to ease your mind. I am a X-ray tech, I don't do CTs but have seen plenty of them done. They use a pretty light sedation so that she just goes down for a good nap(it is called conscious sedation, no tubes down her throat or anything like that she will just need an IV). The sedation insures a good scan and makes sure that only one scan is needed, due to the radiation you don't want them having to scan anymore times than they need to. They will monitor her brefore and after on a pluse ox and there should be a nurse there that will monitor her while she is in the Cat Scan machine. Are they scanning her head? If that is the case it shouldn't last 30 mins, CTs are really quick 10-15 mins at the most. They will scan her and then take her out to recover from the sedation with continued monitoring until she is good and awake and if the nurse is really good they should give a follow up call to you the next day at home. IF you have any questions you should be able to call the place she is having the scan and talk to the nurse or whoever is going to sedate just to ease your mind, they will be able to tell you exactly what to expect from start to finish. I know it is scary but it will be over really quick and give you the answers they are looking for. Be sure you have them shield her as well, on top of her abdomen as well as under it. HTH if you have any more questions you can PM me or give the CT Tech or nurse that will be involved with the procedure it will make you feel tons better.:hugs: As for GoddesWifeMom her DD more than likely had a reaction to the contrast(x-ray dye) they use, it is iodine based not the sedation, lots of people are allergic to that stuff.
maggie_may
05-16-2007, 07:10 PM
Thank you all for your replies.
I feel so stupid that I didn't ask more questions about it when the Doc told me. It's always that way. I go blank when the docs tell me something and then at home I have a hundred questions. If I don't write down the questions at home I go blank again at the next appt.
Thank you Carleyann'sMommy for all that info. Everytime I see one of your posts I smile because of your watermelon baby.
carleyann'smommy
05-16-2007, 07:18 PM
You are very welcome. I understand if you are not medically savvy you really have no idea what to ask, I just know because this is my profession but I have seen it a million times parents come in with their kids having no clue becase their doc doesn't explain it well or just plain doesn't really know what will happen in radiology. It will go well I promise just call and ask all the questions you have I'm sure the nurse will be more than happy to ease your mind. I'm glad her outfit can make you smile it does me, who doesn't love watermelons. :goodvibes:
GoddessWifeMom
05-16-2007, 07:18 PM
As for GoddesWifeMom her DD more than likely had a reaction to the contrast(x-ray dye) they use, it is iodine based not the sedation, lots of people are allergic to that stuff.
Sorry but I just have to say that yes my DD had a reaction to the Chloral Hydrate & the Contrast Medium.
She did in deed have an anaphalaxyis reaction to the Chloral Hydrate. She had prolonged effects from it and after when we were at home she stopped breathing 3 times.
The reaction she had from the contrast dye was an allergic reaction that was a rash all over her body.
Our DD has Epilepsy and unfortunately had her first CT scan at 6mns. She in fact will NOT be having another.
Sorry but for some people it's not all roses and as easy as pie. :goodvibes:
lilmama2dsndd
05-16-2007, 07:32 PM
My DS was kept in a medically induce coma from 3 hours old to 6 days old and even then kept pretty heavily sedated for another week. It is very scary and there are things that can go wrong. MRIs, C-scans, EEGs, I've had my fill. We didn't have any problems with any of the actual procedures, a couple of the MRI's & C-scans they used anestheia and everything went ok, but different people have different risks. :hugs: :hugs: :hugs: I hope everything comes out ok and the c-scan goes well :hugs: :hugs: :hugs:
mama_times5
05-16-2007, 08:36 PM
:hugs: :hugs: :hugs:
Yes, there are always risks, but if it helps any, we love sedation around here. :giggle: My really medically involved 6 yr old stopped sleeping all together at 18 months. No exaggeration! After three days straight of no closed eyes, she started taking chloral hydrate every night to sleep. I know I would still emotionally fight it if another one of my children had to have a procedure/test done. Especially with your dd's past, there's a lot attached to these experiences. Like the pp said, CT scans are usually very quick. I hope it goes very smoothly for you and that the results are helpful.
carleyann'smommy
05-16-2007, 08:44 PM
Sorry but I just have to say that yes my DD had a reaction to the Chloral Hydrate & the Contrast Medium.
She did in deed have an anaphalaxyis reaction to the Chloral Hydrate. She had prolonged effects from it and after when we were at home she stopped breathing 3 times.
The reaction she had from the contrast dye was an allergic reaction that was a rash all over her body.
Our DD has Epilepsy and unfortunately had her first CT scan at 6mns. She in fact will NOT be having another.
Sorry but for some people it's not all roses and as easy as pie. :goodvibes:
:hugs: I apologize Momma!
GoddessWifeMom
05-17-2007, 07:12 AM
:hugs: I apologize Momma!
NP :hugs:
I'm just sensitive about it I guess because it was such a scary experience and I still have nightmares about it.
Those were the scariest 2 months of my life and something I'm not easily going to forget.
Sorry if I sounded snarky or upset or rude I didn't mean to at all. :hugs:
But you are right LOTS of people are allergic to the contrast dye and NOT the Chloral Hydrate, it's just that when you are allergic to the Chloral Hydrate it's bad then to be allergic to the contrast dye on top of it is. :banghead:
I'm sure the OP's DD will be fine though. Like PP said if your DD doesn't have any reactions then the test will be a breeze.
The actual test itself was easy they let me go in the room with her. It was 10-15 mins maybe less and she just laid there and went into the machine a little so her head was in it.
That's it.
Then you go back to your room they have you wake her up right away with a cool cloth and talking to her and 20-30 mins later or less you're out the door.
My DH and I still think that if DD had the test done at the Children's Hospital instead of our local hospital where they are not as used to doing tiny babies then we probably would have had a much better experience.
Hope all goes well Mama :hugs:
amielia80
05-17-2007, 07:31 AM
my medically involved 5 year old has had many procedures done including c-scans.They used verset(I have no idea how to spell) for the c-scan.He was just realxed but never went to sleep! He has had everything from chlorohydrate (spelling) to being totally under!! He was fine everytime, but I am not going to tell you that it wasn't scary each and everyime he has been sedated. IT is normal to be concerned, but she will be fine! I urge you to call back your doctor and ask any questions you have and tell him/her you are nervous. Kepping the lines of communication open is the best thing!
I also agree with Goddesswifemom, being at a hospital for Children, where children are their specialty makes all the difference! They really know how to talk to the kids and make them comfortable better than at a regular hospital!
Good luck, she will be fine try and relax!!!
We'll be thinking of you mama!
maggie_may
05-17-2007, 09:35 AM
There is no Children's Hospital here :banghead: They are building one, I think it opens 2012 or something.
I really appreciate everyone sharing their experiences with me. I know one mum IRL whose kid has the same problem as Ella (a type of brain damage called periventricular leukomalacia) but Ella was doing so much better than her baby that it got hard to talk to her. You know that it isn't fair feeling? I know it was hard to see Ella do better than her DS.
I think my bad feelings are more that I really thought she was doing so well. When she was born they gave us the bad news and told us to prepare for the worst possible senario. I imagined her in a pink wheelchair and mentally handicapped but I was okay with it. Like if that's what it was than that's what it was. But then she did soooo much better (with tons of therapy) and she started charting like a "normal kid" and I guess I started thinking that she was going to be the exception. I ignored all these little things that I would have jumped all over a year ago. When we went to see her NICU followup doc and he asked what I was concerned about I said nothing. He said really? And then pointed out all these little problems or delays that I'd noticed but excused cause she's always been a little behind but she always gets things.
I still really don't think she has hydrocelphalous though. I dunno.
I do feel better though after getting all this out. Thanks. The cat scan is in one week. We have to be at the hospital at 7:30 and it's not till 9:30. I can't feed her milk after 12 or water after 3. That's going to be a bad scene. she's a bad sleeper and nurses several times a night.
Carleyann'smommy, is that not giving her food thing for everyone or does that mean they are going to give her dye or something? You can't dye a brain can you?
SugarBunsWool&More
05-17-2007, 09:41 AM
My son had a CT scan of his head at about 10 months or so. It was a lot easier than I thought it would be!
They had to strap him down, but they gave him a toy and my DH and I were able to be right there with him. It didn't take long at.all. and he didn't even cry.
I'm sorry you're going through this mama, but try to mark the scan off your list of worries. I'm sure it will go great!! GL mama!! :hugs:
carleyann'smommy
05-17-2007, 09:45 AM
They don't want her to have anything to eat because of the sedation. Just a precaution to make sure she doesn't aspirate or vomit from the sedation. Most likely it is a CT brain without contrast(dye) but I don't know how hydrocelphalous is seen on CT, If you have your prescripiton from the doc it will say with CT w/o contrast or CT w/contrast or they can do both with and without but in most cases it is without when scanning the brain. HTH
GoddessWifeMom
05-17-2007, 10:00 AM
but in most cases it is without when scanning the brain. HTH
Really? That's interesting.
I guess it probably depends on what they are looking for eh. Because DD's was for her Brain, for her Epilepsy, and she had the contrast. Maybe it's because they wanted to see the action in the brain or something. :headscratch:
If it's without the contrast Mama it will be way easier too. :thumbsup:
Ali
05-17-2007, 10:34 PM
Hi There,
I haven't read all the posts, but I wanted to say that if they suspect hydro you for sure should get a CT scan. They are very quick. They generally do not put a child to sleep.
My son keegan was a preemie, had a brain bleed and does have hydrocephalus. Compared to what he has been through a CT is a peice of cake.
You baby will likely be scared since they will probably have to bind her in order to keep her still, that is the scary part. With Keegan they would acutally tape his head down so he couldn't move it, but luckily the actual scan only took minutes, so it was over quickly.
If you have any questions about hydro see my siggy. It is for the board of parent w/ children who have hydrocephalus. And please feel free to PM me. Good luck, I hope the CT scan comes back normal.
Ali
05-17-2007, 10:35 PM
They don't want her to have anything to eat because of the sedation. Just a precaution to make sure she doesn't aspirate or vomit from the sedation. Most likely it is a CT brain without contrast(dye) but I don't know how hydrocelphalous is seen on CT, If you have your prescripiton from the doc it will say with CT w/o contrast or CT w/contrast or they can do both with and without but in most cases it is without when scanning the brain. HTH
FYI, they generally do a CT w/o contrast for hydro. They will suspect hydro if the ventricles are oversized.
snowbird25ca
05-18-2007, 03:25 AM
My dd had a CT scan around your dd's age to rule out hydrocephalous. (That's an abnormal amount of fluid around the brain when it's not draining properly, right? That's what they thought she might have.)
Anyways, it was ordered because she was diagnosed with hypotonia and her head circumference was off the charts and an atypical shape and her soft spot on top of her head still hadn't closed in. I had concerns about it, and nearly refused it, but was told there was a 5% chance there might be something found that would require treatment, so decided to go ahead with it.
Long story short, I wish we had refused it... she went absolutely berserk when she came out of it and it lasted about 30mins. They had troubles getting an IV - blew 2 veins, before deciding to sedate her with some gas and then start the IV after. The worst though was how she acted those 30mins afterwards. It was terrifying, and apparently it's quite normal for kids to do that, I just wish somebody had warned me.
Everything turned out fine, they wanted some blood tests done which we've decided not to do based on our instincts saying that they're unnecessary and that she is fine. She's developing on track now, healthy and intelligent and I have no worries about her.
My advice to you differs from what everyone else has said. It sounds to me like your mommy instinct is trying to steer you away from this test, but you have dr.'s and others telling you it's no big deal and just do it and get it over with. The fact that both you & your dh are feeling this way says to me that you need to sit down with him and figure out what you're scared of. Is it the possible diagnosis? The test itself? The sedation? Do you have a scenario in your head that you can see happening?
I've been in a different experience where everything in my body was screaming that what we were going to do was wrong, and I kept trying to rationalize it as me just being afraid of dd feeling the pain from a needle. Then she had a severe reaction. And I learned my lesson. If mommy gut tells you not to do something, don't do it.
Is there anything specific that is making the dr.'s suspect hydrocephaly and not something that could just be related to her being preemie and taking a bit longer to do some things than other kids her age? Is there any way to get in to see the dr. and get a % chance of them finding anything on the CT scan that would require treatment?
My belief is this, if you & dh both *know* inside that your dd is healthy and there's nothing to worry about, and you both also have alarm bells going off about the procedure, then you may need to re-evaluate the necessity of it. :2cents:
Feel free to PM me if you'd like, I likely won't check this thread again as comp time is often limited unless I'm up until 3am like tonight. :giggle:
lydclove
05-18-2007, 06:21 AM
Here are my thoughts on this, FWIW. If there is a chance of hydrocephalus, you need to know so that it can be treated appropriately and sooner rather than later. Unfortunately, all medical procedures have potential side effects and you and your husband need to consider the cost-benefit ratio. In an otherwise healthy human being, significant anesthetic problems occur about 1 in 10,000 times but if you are that 1 person, then who cares about what the statistics say? If you are worried about the anesthesia in particular, call or make an appt with the doc beforehand. Ask what drugs they plan to use and why. Get them to explain the risks and the reasons. Someone above mentioned Versed (which is midazolam and similar to valium). If my dd had to be sedated, then I would vote for this type of drug as it has minimal effects on the heart and lungs and decreases anxiety. The other thing I would ask about is why a CT scan (which requires radiation). What about an MRI (takes longer so more time with sedation) or ultrasound if the fontanel is still open?
I am sorry you are in such a difficult position. The chances are that all will go smoothly and be fine. Let us know how things go and what you decide.
maggie_may
05-18-2007, 11:07 AM
DD had a grade 4 brain bleed and mild hydro while in the NICU which resolved itself. They are worried now because her head size went from the 5th% to the 25%th. She doesn't talk and just learned to walk. She has a slight strabismus in the right eye. Her doc did some odd thing with her toes and said "hmmm, that's not good." Seriously, something to do with her toes freaked him out.
I have a bad feeling about the sedation mostly I think. I do have a bad scenario in my head, it's funny you should ask that Snowbird.
I checked the letter the hospital sent me. It says appt for "sedated ct scan" but doesn't say anything about dye.
Last summer this doc freaked out because he thought her soft spots had closed and we got sent to a neurosurgeon. He saw Ella twice but just physically examined her but said that he didn't want to order a ct scan (kinda normal procedure for that) because he really hates doing them on babies unless he's pretty sure they need them.
I just don't know. I'm pretty sure I'm going to do it, but I really feel sick about it. My poor kid.
amielia80
05-18-2007, 12:05 PM
oh mama...I can only imagine how you must feel! Could you talk to them about using the versed instead of her going under? My boy was 4 when this was done (and I am guessing much bigger than you DD) and he is VERY active!! It just made him so relaxed and sleepy that he laid still and didn't fight anything. He was awake though and to me, that is less scary....just a thought. Keep us posted!
My guy has to go ubder again on tuesday for an Anorectal Manomentry (ARM) procedure, so I am right there with you
:)
:hugs:
Ali
05-20-2007, 09:41 AM
DD had a grade 4 brain bleed and mild hydro while in the NICU which resolved itself. They are worried now because her head size went from the 5th% to the 25%th. She doesn't talk and just learned to walk. She has a slight strabismus in the right eye. Her doc did some odd thing with her toes and said "hmmm, that's not good." Seriously, something to do with her toes freaked him out.
I have a bad feeling about the sedation mostly I think. I do have a bad scenario in my head, it's funny you should ask that Snowbird.
I checked the letter the hospital sent me. It says appt for "sedated ct scan" but doesn't say anything about dye.
Last summer this doc freaked out because he thought her soft spots had closed and we got sent to a neurosurgeon. He saw Ella twice but just physically examined her but said that he didn't want to order a ct scan (kinda normal procedure for that) because he really hates doing them on babies unless he's pretty sure they need them.
I just don't know. I'm pretty sure I'm going to do it, but I really feel sick about it. My poor kid.
You know, with Keegan, they always made an appointment for a sedated CT, but he has never needed sedation. They do try to do it w/o sedation first so perhaps that will comfort you somewhat.
Your story sounds similiar to ours. Preemie, brain bleed, even stratosbismas. Except Keegan's hydro did not resolve and he had a shunt placed very early on. I truly feel that is why he is doing so well now.
Your dd sounds like she has some high risk factors. Is this really a choice? I mean it sounds like the CT is needed to rule out a condition that can cause severe brain damage if you do nothing about it. And she is at high risk for it and going from 5% to 25% in head circumfrence seems abnormal. I know it is hard and scary :hugs: but I truly think the test is necessary.
Has she ever been sedated before?
kochanyk
05-20-2007, 09:57 AM
Not all roses here either :(
We went through an MRI w/our 6 mo/old (last mo) & doing an EEG next week- long story short after the anest he started having seizures :( I totally feel your anxiety. All in all I'm glad we did though b/c he could die from untreated hypopituitarism (which is what they were looking for)... on the good hand CTs are shorter. Good luck!
GoddessWifeMom
05-20-2007, 12:32 PM
Not all roses here either :(
We went through an MRI w/our 6 mo/old (last mo) & doing an EEG next week- long story short after the anest he started having seizures :( I totally feel your anxiety. All in all I'm glad we did though b/c he could die from untreated hypopituitarism (which is what they were looking for)... on the good hand CTs are shorter. Good luck!
:hugs:
Sorry Mama it wasn't roses for you either. Our DD has her first MRI in August and I'm hoping it's better than our CT experience, at least it's a MUCH better test to have results wise.
Anyway just wanted to make you feel better about your EEG.
DD has had 4 and they are SUPER easy esp. at your DS's age. They will have you hold him most likely and feed him while they are doing it.
He will be awake and while the electrodes they put on his head look funny and kind of scary they are not at all. Then you just sit there and they want him to be still and probably will hope he falls asleep at some point.
