Hmmm, shunt issue???

[Barb]

I hate that "well, I think it is just a bug but maybe not" feeling. Carter has had bad headache for two days now localized right in front forehead. Yesterday took a total of 800 mgs of motrin, today he is already at 600 with no real pain relief. Whenever he lays down he gets nauseus but everything else is OK. I should mention that I have been feeling 'crudy' for days but mine could be related to something else as well.

Neuro wants to see him in the am for scans/appt.

His eyes are fine, he is not acting strange, nothing else feels weird to him. I just hate, hate, hate how our kiddo's can't just be sick. You always have that 'what if' in the back of your head. He is both vp shunted and at T11.

The one weird symptom though is his low body temp. His temp is bouncing between 93 and 96. That has me a little freaked. I have never seen that one. Anyone ever experience that one? I guess it could be the motrin but he needs that to deal with the pain. UGH!

[Summer25]

It would be best to get the shunt checked. If nothing is touching the pain then it could be a malfunction. That was how I told if it was or not. My body temp always is low. When mine is actually considered normal I have a fever.

[bcain]

Now sing it to me, sing it to me..Yeah (to the tune of Respect).:dance2::dance2:

Illness just isn't the same with our kids. There's so much more to think about with those so called ordinary viral symptoms: Headache, vomiting, diarrhea, fever, fatigue, ect. The low temp is wierd I agree. Sarah's temp is usually 97 rectal, so 99 is fever starting for her. I've heard of illness causing a low temp. In my own experience, Motrin doesn't usually cause a lower temp than what's normal for the patient.

This past month has been tough with "Symptoms", thank goodness Sarah doesn't have a shunt to worry about, but I still think about the chiari, and possibility of late hydro. I hope Carter gets better soon, I'm praying for good results on the tests for Carter. :happy065:

[Barb]

We cancelled the tests because it became pretty obvious that he was just sick. :puke::clap2:Thanks so much for thinking about us!

[gabrielslife]

its good to hear that he was just sick, thank god there are no other complications..

[Big John]

Glad everything's OK. My Granddaughter just had to have her valve replaced. It moved and wasn't working like it should. Operation was fine and she is back to her normal rascally self. The docs said it moved due to her head growing (normally). She got the shunt when she was 2 days old and they had to replace the valve at 11 months. Is this unusual or just par for the course?

[XoBLoNDiE85]

Hannah had hers placed at 7hrs old and had a revision in december (5 months old) Her valve was fine tho, it was the line to her abdomen. It was tied in knots around her intestines....yea SCARY!! could have been toxic if pulled tight! Im told its different with everyone....praying this one lasts longer! She is doing great now!

[Big John]

Glad everything's OK. They checked out the shunt after she got sick with flu like symptoms, her fever went over 102F and they decided to look at hte valve and it was faulty. Fortunately it went well and all is well. (Just wished she lived closer).:)

[XoBLoNDiE85]

Praise the Lord!

[tanya]

my son addsion had his first shunt placed right after birth and to our surprise it needed to be revised just two weeks before his first birthday; the valve was faulty he is now nine years old and this one works like a charm i hope that it stays this way

[Barb]

So, I am starting to get a little suspicious here of something actually going on with maybe tethering or syrinx. He is having a really hard time with accidents and gagging and just last night told me his back was hurting. I am going to get him in for an MRI to check the shunt in syrinx. He just still seems 'off'. A bunch of symptoms slowly and quietly starting to add up. :21a:

[Summer25]

So, I am starting to get a little suspicious here of something actually going on with maybe tethering or syrinx. He is having a really hard time with accidents and gagging and just last night told me his back was hurting. I am going to get him in for an MRI to check the shunt in syrinx. He just still seems 'off'. A bunch of symptoms slowly and quietly starting to add up. :21a:

gagging issues are usually chiari. So, make sure to get a brain and neck MRI.

[Barb]

Yeah, he has had chiari decompression. Ususually for him the gagging comes when the csf is building up somewhere. He has a 12 vert. long shunted syrinx as well.

[Barb]

We are scheduled for 2 1/2 hr MRI on Tues. night. No ifs, and or buts about it something is wrong. No more sticking my ostrich head in the sand. In the last week he has deteriorated to where he can't transfer into SUV (sort of a big push), cecostomy not working well, and gagging and headaches a plenty.

My guess, something up with the 12 vert. shunted syrinx or tethered cord (2 yrs out from first detethering)

My biggest worry? We are now in a state where the Childrens Hosp is a teaching facility and I absolutely, positively will not let a resident touch him after the issues we had with chiari decompression. So, it may mean taking him out of state to our old neuro.

UGGGGGGGGGGHHHHHHHHHHHHHHHHHH...I hate knowing surgery is 95% chance around the corner. He is OK with it though this time. He says he feels terrible and wants to get better so if that is what it takes, so be it

[nolda]

My daughter has a complain of ringing ears because of which she ls unable to sleep well. Worried about the shunt which was placed when she was 3 months old. Two days ago we showed her to a Nuerologist. As soon as he heard she is sb he said nothing can be done it is too late. My daughter felt so sad and she told me how rude he is....... without hearing us properly he concluded, later he told us to do a head MRI.

[celticwinter2526]

My son is vp on one side and a t12. he had an infection a week after they put it in. the only reason we knew was the temp. he had none of the other symptoms. he had a temp of 102. it wound up being a stomach infection that shot up the tube. the doctors said we caught it very early and in order for us to see more symptoms it could have taken anywhere up to the next 6 months.

ps the tylenol/motrin could do that. whenever i take pain medication or have an iv my temp plummets.

[celticwinter2526]

[

My biggest worry? We are now in a state where the Childrens Hosp is a teaching facility and I absolutely, positively will not let a resident touch him after the issues we had with chiari decompression. So, it may mean taking him out of state to our old neuro.

We were in the biggest teaching hospital in new york with our son and I felt the same way. I finally kicked everyone out and said unless you have to be in the room or hes dying, get out! I told them I would only speak with HIS ACTUAL doctor. the one who did the operations and that I would wait all night if I had to to speak to him, but under no circumstances were and nurses or residents to give me any updates on anything other than his STATS on the monitors. It worked well for us and our doctor said he was glad we said it.... I was ready to kill them. I understand the need for teaching hospitals but they dont seem to understand the perspective of the families..... I dont know how many times I was half naked on a table having an ultrasound and half the damn students in the hospital were in the room with me.... I was never asked for permission and people were always comming and going..... I left all of my modesty on the table....

sorry kind of got side tracked

[Barb]

Teaching hospitals drive me insane! When he was younger I swear we would get asked the same questions no less than 10 times a day by different students/residents/interns and finally the doctors. I finally got to the point where I would just bluntly ask them when they would start up: "Did you read his chart? No? No problem, I am here all day, I will gladly answer your questions once you have taken minutes to read up on him". Usually got rid of them. Then when we moved and no longer had to deal with a teaching hospital it was like a tiny miracle occurred....one or two doctors who knew all about him to deal with? Pure bliss! I do not relish the fact that we now have to deal with a teaching hospital again. I *believe* that is your right to sign off on not being a teaching case. I will be finding out, of course!

One of the the little hidden things about teaching hospitals is that in the tiny print you sign a waiver stating that the doctor or any of his associates may provide care. So, YOUR NS talks to you before surgery and after and tells you all went well, but lots of time a resident does portions of the surgery under supervision. You are never directly told this. Order your OR reports, you will be shocked out how often it happens. C had his decompression go wrong because too much was shaved off the bone and caused an instability in his neck. YEARS later I read through the OR reports and realized a resident had done it. Now, no way, no how will I ever let a resident touch him. I know everyone has to learn but that is what monkeys are for in my opinion (and YES, I am an animal lover so don't flame me for that but if it is my sons brain or a monkeys being used as a learning tool, um sorry for the monkey) I think a cervical spinal fusion and months in a halo qualifies as paying his dues to the teaching of residents.

Ask your dr. directly if he can guarantee you that no one else will perform surgery before signing those consents and then get the OR reports as soon as they are available.

Going to edit this to add while I am on my soapbox: the one lesson I would like every parent to learn from me??? Get every single doctors note, or report, hospital chart copied and in your possession! Not only do you learn valuable insight about your child, you may be surprised about the tidbets they note about you, and learn alot about your doctor in the process. Besides, it truly gives you a leg up going somewhere new to have it all in your hand. I have every report, xray, ct, mri since they day he was born. Lots of papers and most of it is useless now but at the time I needed it, was golden.

[Summer25]

Oh I have my fair share of resident stories...lol. I went to one clinic for about 2 years for my ureter blockage and only saw residents. Never in those 2 years, did I ever meet the doctor. Then when the resident left, the whole process started all over again. Meet the new resident, ask questions, same tests, nephrostomy change. My mom got to meet the actual doctor once after a surgery and he was very rude to her. So, I finally said forget it and went back to my old doctor. He got into contact with the doctor and now the whole clinic is in the process of being shut down because of the doctors never being there. The kidney function I had in the beginning of the process could have been saved if surgery had just been done and all of the tests that weren't necessary were not done. So, residents and me don't work anymore. If I do have one I ask for the actual doctor to be in the room as well. I also just recently got all of my films and radiology reports from the time I was born until I left the childrens hospital. It is so interesting. Also to add, to the OR note thing, make sure you get the recovery notes as well. I went into anaphylatic shock after a surgery and when we went back to get all of the surgery and recovery notes there was only 1 page note from recovery of a medication I was given. Nothing ever said why I went into shock. Also one of the surgery notes had been revised to say that I was going to be placed on a vent for 2 days to rest my lungs. Even though nothing happened in the OR. It all happened in the recovery room. I also woke up with a vent in and a guy getting an iv in with latex gloves on. Nothing was every said about that incident as well. So, make sure they are accurate.

[Barb]

Did this for grandparents but then thought it would be good to post here for newer parents. Remember, I just titled it for them so they would understand. His chiari was decompressed 7 years ago. The largest syrinx is already shunted. Maybe it will help someone. NS wants to try vp shunt revision.

[HelenCate]

Good on you for keeping copies of everything Barb...I wish my mum had done the same thing..didn't think of it though. When I changed locations as an adult I had to find a new urosurgeon, who then tried to get all of my old records from the children's hospital. Some clod had decided they were a waste of space and had been destroyed.

[Dodger67]

I can top that.

The entire children's hospital I went to was declared a waste of space!
Of course all the records were destroyed with the buildings. I believe the site now contains a few low rent apartment blocks.

[HelenCate]

oh heck Dodger...that's really pathetic also...I mean, how can they possibly expect us to not need vital information about US

[Gymp]

I'm in the midst of trying to get my records from the hospital that did all my surgeries from 1960 to 1976,I've filled out all the paperwork and am waiting a reply.I don't hold much hope that they still exist but it's worth a try.It wasn't until I found this forum that I even thought of getting my history...Duh!!!

Gymp

[HelenCate]

fingers crossed Gymp

[abbysdad]

Hey Barb - just wondering how Carter's doing? Hope he's doing better...

[Barb]

Thanks for asking. He is cranky, emotional and having tons of issues with headaches, continence, pain, weakness. I guess Monday can't come quick enough. Hope I don't end up eating those words though. I don't feel good about any of this but it something needs to be done soon.

[abbysdad]

I'm sorry to hear that - I hope it will get lots better next week. We'll be thinking of you...

[valerie]

Good luck, hope it all goes ok, thinking of ye xxx

[Cubster]

We be praying Carter gets some relief soon and makes a quick recovery.

[Barb]

We are off for a shunt revision. Should be back by tomorrow afternoon if all goes well. Really nervous about getting into the slit vents.

If you want to hear how are surgery goes you can hop over to my blog in my signature. I am going to update family and friends via whrrl there.

[abbysdad]

Good luck - thinking of you! Hope it all goes smoothly & you're home in no time...

[abbysdad]

And from what I can see on whrrl.com, the news is good :)

[Barb]

It is. So far (knock on wood) he is doing great. Seems to feel better now than he has in months. I love whrrl for updating family. Thanks for checking up on us

[Barb]

I know low grade temps are common on night of surgery but how quickly would an infection spike?

[lisawoody]

Thank goodness it's not his shunt, hope he feels better soon. There are some really weird bugs going around our country at the moment , on top of swine flu!! Erin had a shunt put in at 5 days old but at 3 months they took it out as she had developed an odd growth like tissue at either end, the neuros figured that she had functioned really well with it blocked so didn't bother to replace it and touch wood she hasn't needed another in the last six years. ZGood luck with Carter, lots of lemon and honey drinks and cuddles. Take care yourself.

[Summer25]

I know low grade temps are common on night of surgery but how quickly would an infection spike?

Mine was right at the 10 day mark.

[Cubster]

Glad things went smoothly and Carter is recovering.

[Summer25]

Mine was right at the 10 day mark.

Forgot to add about the fever. Mine went from normal to 104 in a matter of minutes. So I never had a low grade temp. I was normal and then sick deathly ill in one day.

[lisawoody]

hope all is going well, thinking of you.

[Gracie]

Sure hope all is going well. It is so true, we have to think of so many things that could go wrong when they are sick. I have to ask what Barb meant by "his eyes are fine"? What happens with their eyes if the shunt is malfunctioning?

[Dodger67]

The eye symptom is something called "sunsetting". It is when the iris/pupil is partly lowered behind the bottom eyelid - like the sun setting halfway below the horizon.

[Summer25]

The eye symptom is something called "sunsetting". It is when the iris/pupil is partly lowered behind the bottom eyelid - like the sun setting halfway below the horizon.

Can also mean that pressure behind his eyes are fine. If there is a shunt malfunction the pressure behind the eyes builds up.

[Gracie]

Thank you Dodger67 and Summer25. I am with Barb. I worry all the time about shunt malfunction. My little one is 2 with mylomengcele. She has a VP shunt on her left side. She also has seizures and missing corpus colosum. Sometimes her left eye drifts upwards and it makes me wonder what is going on. When Barb said the worry about something being wrong is always there I sure can relate. This site is awsome. Haven't posted much but I certainly get much comfort from all of you. Thanks

[Barb]

Thanks everyone for asking about us. Didn't mean to disappear but the sucky thing about dealing with a sick kid is eventually they get better and you have no more excuse not to catch up with work! *but would rather have that than anything else*

He is great. STANDING on his own for a few seconds. Using his walker. He says and seems like he feels better than he has in quite some time. Seems like this reduced some of the pressure on the spinal cord. The follow up MRI is in 6 weeks so I will post some pictures after that.

Incision healing nicely and he can get back in the pool by Saturday which was all he really cared about :26aa:

Just an interesting side note that they replaced his prior programmable shunt with a regular low pressure one. According to this NS, studies are showing that programmables may be causing more problems than solutions.

[Barb]

Not feeling very well AGAIN! Back in for an MRI on Friday. :scream:

[joybell322]

So sorry to hear that! How did it go?

[Barb]

Had to repeat it on Monday cause he was fidgeting too much Friday. Syrinx is back. They suggested we repeat in 2 months or follow up faster if symptoms get worse quicker. On one hand I am glad to always take the conservative approach. On the other, it sucks knowing it is back and getting bigger

[jlovingr]

My daughter Ashley had over 100 shunt revisions in her short little life. Ashley lost her battle in January and I would give anything to have one more shunt revision... Her only symptom was usually a severe headache right across her forehead. Most of the time her problem was from overdraining. Even with the anti-gravity devices put in she still continued to have that problem. Never found a happy medium with her shunts..It's very hard to determine whether it's a shunt issue or just them having a bug. Never second guess yourself thou.

[Barb]

I am sorry for your loss. We knew a family who's son had over 180 revisions. He did not have SB, rather achondroplasia (sp?). He passed away in his late teens.

[gister]

Had to repeat it on Monday cause he was fidgeting too much Friday. Syrinx is back. They suggested we repeat in 2 months or follow up faster if symptoms get worse quicker. On one hand I am glad to always take the conservative approach. On the other, it sucks knowing it is back and getting bigger

Hey Barb, did you know that there is another NS in Denver not at The Children's? Best part, a non teaching hospital, no residents!! She is great and is very familiar with slit ventricles. She diagnosed my Andy's last summer. I had suspected for the last few years, she just confirmed it! As for residents, I have kicked them out of the room in the middle of the night, refused to allow them to do a shunt tap, and my favorite.. had one tell me that they didn't mess with a VP shunt unless the kid had a blown pupil! The last one was at The Children's.
What kind of shunt does Carter have for the syrnix? We had a small stint put in but it clogged up within 2 weeks, so now has a syringo/plural shunt with no reservoir. Andy's syrnix starts at C3 and goes to L4, yea big one! He has not had any further problems since placed in September of 2005. KNOCKING ON WOOD!! :~)
Later, Beth mom to 2 boys. Wife to a PICU Nurse. Nurse traveler family moving around the country every 3 months!
Andy, 7, SB L5-S1, cath X5, VP shunt, MACE, TES. Current surgery count 12, no more wheel chair or AFO’s.
Ryan, 6 Asthma, allergies, his brother’s best buddy and worst bully!!

[chelle722]

It is weird that you mention low body temp. KJ's is always low and I just figured the thermometer wasn't working. We bought a new one and it is the same. It is ususally between 96 and 97 so I just assume that 99 is a fever. So confusing! Glad everything is ok for your little guy. It is so scary when you don't know. KJ's shunt had to be revised at 4 months and knock on wood is working great now. Hope the same for you guys. God Bless You

[ive]

Hello Barb! I'm Petar's mom, he is 3 months without shunt, after 3 1/2 years with shunt. That weird low body temp. Petar had too, for a year or too, I thought that it has something to do with abdominal pain, with his food intolerance (cow and goat milk, eggs, white flour,....: all acid forming food?), atopic dermatitis, eatching mostly in his right ear)... He even smell strange, plastic smell maybe. He didn't have any symptoms of shunt malformation at all... 36, 36,1 or 36,2 was his body temp., but that was not his usual temp., now he is returned to his 36,6 or 36,7. We are still on a special diet (no lactose, no sugar, no white flour,....), and he is feeling just fine. I don't now his temp., is it connected with food or were it connected with shunt?