Does the worrying ever end?

[Kristine]

I'm sure some of you may remember the headaches that my sweet Emily suffers from. She had actually been doing very well lately and only having one every 6-8 weeks or so. But, we are starting to get concerned about her. In the last week to 10 days she just seems out of sorts. She tires easily, seems whinier than normal, and has had several headaches (some with vomiting) in the past week. Of course our first thought is always whether or not it is the shunt, but then she will get over it and be okay for a while. I just can't get past this feeling down deep that something isn't right. She just isn't acting herself. I have learned my lesson from her last failure to not jump the gun so quickly to go in for a scan. I just always seem to be second guessing everything and thinking it could be her shunt this time, or just some age thing she is going through. At what point do I need to contact the doctor? I have to wait until the shunt fully fails (if it is the shunt), don't I? Does this even sound like it could be shunt related?

Here is a pic from tonight right before trick-or-treating.
http://img.photobucket.com/albums/v289/kebbert/Halloween.jpg

Here is one, also from tonight, when she got one of her headaches.
http://img.photobucket.com/albums/v289/kebbert/Halloween2.jpg

And here is her brother trying to kiss her and make it better.
http://img.photobucket.com/albums/v289/kebbert/Halloween3.jpg

[Mom2HeathandKynzer]

here are some much needed {{{{HUGS}}}} I know all too well the scared sick to your stomach feeling that I am sure you are feeling now. Kynzer as you know has had a terrible yr. with shunts...so we have definately been where you are now..and it's so hard to decide when to go to the hospital or contact the NS. My rule is..and this is just mine because Kynzer gets really sick really quick and can't handle alot of pressure...I give him an hour if he is vomiting and has a headache and then we go. Our NS is really good and all I do is call her and she sends us straight to PICU so we don't have to wait in the ER...and we just get a ct scan and go from there...sometimes it's been his shunt and sometimes it hasn't...it's just so hard to tell...but like I have been told...you know when something isn't right with your child. Just like this last week Kynzer was in the hospital at Arkansas Children's having SDR surgery...that was on Monday and by Tuesday he was having headaches..well the NS up there was really nice and kept saying he thought it was because of hte amount of fluid Kynzer lost during the surgery which would have been a low pressure headache...but they did a CT scan anyways...and it looked good...but the symptoms didn't go away...so we ended up in emergency surgery on Sat. morning for a shunt revision...and the NS coming and telling me that I was right all along...now this isn't something I wanted to be right about...but you just know when something isn't right with your child.
I will definately keep Emily in my prayers as well as you and the rest of your family..this is so hard on the whole family!

[Brandon's Mom]

In my layman's opinion, I think your daughter might be having intermittent shunt malfunction and you should definately contact the neurosurgeon's office and ask for a consult.

I went through a very similar "phase" with Brittany and whenever I had a doubt, I called the nurse who would talk to the NS and call me right back. Inevitably, we were told to either go straight to the office, or to the ER for a shunt series to be done.

Some of the things you need to keep track of (to help the NS with a diagnosis) are:

the duration of the headaches

what helps her feel better- Tylenol? lying down on a flat surface? just passage of time?

pain scale scores- chart them for each headache if you feel Emily gives you reliable #s in response to you asking her about her pain level

As in Brittany's case, intermittent shunt malfunction often turns out to be a positional thing. She felt better when she was able to lie flat (no pillow) for approximately 30 minutes. She also tended to get her headaches later in the day, not in the morning, because being upright all day was causing overdraining. Another thing that is very prevalent in intermittent shunt malfunction is slit ventricles... with slit vents, because the catheter is in such a small area, the catheter can get stuck up against the wall of the vent and stop working until the catheter moves and is freed up again to continue the flow of the CSF. If you've seen slit vents in past CTs or MRIs that Emily has had I would be even more confident in my guess that she is having intermittent shunt malfunction.

IF it is determined that she is having intermittent shunt malfunction you will then be stuck with the decision whether or not to have the shunt revised to try and stop the headaches. This then becomes an individual decision made by you and the neurosurgeon and is considered an elective surgery. I think different physicians have different opinions on how many headaches is too many but a paper by the most reliable source I know, stated that when there are 2 a month it is time to consider a revision.

If Emily has slit vents the chance of improvement are based upon the correct placement of the catheter. Brittany's NS tried to help her by taking her VP shunt out that was in the vent horizontally and putting a new one in vertically to improve the odds of keeping it within the open fluid-filled space, to allow the shunt to flow more freely.

Several headaches in less than 2 weeks, along with being tired and irritable definately would have the red flag warning raised in this mommy.

I love the pictures and I hope that Emily's neurosurgeon can help stop the headaches so that you see that wonderful smile that Emily is sporting in the first photo and less of the miserable looking sad face that she has in the second one. Your pictures really hit a warm spot in my heart, they are very much like memories I have of my own twins, how they always look out for one another, too sweet!!! :D

[baitcatcher35]

I am 37 with a shunt of my own that has and probably will again fail. This last time I waited and tried to find other explainations for my headaches and vomiting when that gut instinct told me it was my shunt. FOLLOW YOUR GUT INSTINCT!!!!!! demand a Ct of the head and a shunt series xray to see if maybe the shunt is broke somewhere. It may be nothing or it may very well save your daughters life. I finally demanded a CT it came back normal. The gut was still saying shunt. I demanded a shunt series xray. they refused to do it based off the normal CT. I went to an old doctor in Chicago( I live in Texas) he did the shunt series and a cisternogram. the shunt was indeed broken and caused intermittent symptoms. On the way back from Chicago to texas (4 days had lapsed since I found the shunt was broke) I started having GM seizures and almost died. ALWAYS ALWAYS trust what your heart and gut are telling you. Even if its nothing at least you know that and dont have to wait and see. With Hydro that wait and see can become critical in the blink of an eye. I dont mean to scare you but I am just going by my own personal experience with my own illness. If I can help someone make an informed decision that really helps then having this condition is worth it.

[MegNJaxMom]

Of course I am saying this as a mom that hasn't been down that road... but I would be taking her in or at the very least calling her doctor. That mommy feeling is a powerful thing! I have had a few doctors doubt that Megs had an infection. When I kept insisting, they did the tap, found the infection and started treating... YOU know your girl. That picture of her with her headache is heartbreaking.... Please know you are in my thoughts and prayers.

[kathleenandjoe]

I absolutely hate that the worrying just never does seem to end. I so feel what you are saying here that it hurts. . . and in a weird sort of way makes me feel not so alone.

Four was a difficult attitude and feelings age for Becca along with big time drama. Who am I kidding? - five has been no better. I think at four though, she really started to realize her differences just a bit (though it is still not a huge deal for her) yet was unable to express her feelings (still not great, but better). We have also been dealing with medicine after medicine switch since she turned four for seizures so that plays into our situation too.

I say this because you mentioned that it can be an age thing and I think you may be right to think that - at least that it's part of this picture. Girls at four are in a different place.

I played the "when do we go?" game many times over with Becca. I found that after a while - you got not very far unless something screamed shunt. Now for Becca reoccuring headaches and vomitting would scream shunt - but I know Emily has been battling those symptoms for some time now and they are not convinced with that for her case it seems. So I would at least put a call in and be recording everything (sleep times, headaches, vomits, etc. . . ) and watch closely for things OUT of the ordinary. I HATE that headaches and vomitting are ordinary for her by the way. So not right.

So things like - a noteable increase in sleep, seizure possibilities (as these can cause one to be tired), eye clues, balance clues, cognitive clues, ANY loss of ability at all.

Sadly, each time it was in fact a shunt thing and I had waited until it screamed shunt - I regretted not acting sooner. Every time. But then I know had I acted sooner - they would not have attended to us as quickly and we likely would have reached the O.R. at the same time anyway. That just sucks.

There are so many nasty things going around this time of year and I do not know Emily - but I know Becca and many other special needs kiddos seem to handle such bugs differently - as in acting sick or more tired before any "normal" symptoms are obvious. Plus the fact that any sinus pressure makes one's head hurt if they do not have hydro issues - so imagine with them. Ugh. Even if no runny nose - sinuses can still be infected or causing headaches. Humidifiers may be good too. Again - so much nasty stuff around. Becca has had an awful cough that included a fever and sinus without runny nose crud. For two weeks and still going strong. A vurus equipt with onset seizures and we'll of course expect the ones at the end too.

Bottom line though - you feel something is not right. Call the NS. I cannot remember if you have already - but if not - seek a second and third opinion on her situation. It just does not seem right that she must endure such headaches even if it was getting less frequent.

Keep us posted. The worrying does not ever end. . . but at least know that there are others who know how you feel through every sickness . . . fearing the worst in the back of your mind.

Hugs,
Kathleen

[Austinsmom]

Above all...
Always trust your gut!!
I agree with Joy about intermittent shunt malfunction.
Just trust you know your kids more than anyone.
My heart goes out to you
{{HUgs}}
Deborah

P S Does the worrying ever end? ...... NO, sorry it never ends

[CoolAngel28]

I think parents of hydro kids sign a secret contract that states very clearly to worry about them,until they go to the grave.I've been out of my mom's house for six years,and she still frets about me..my dad too,but,not as much.

Kristin

[DystoniaGal]

P S Does the worrying ever end? ...... NO, sorry it never ends

They say from the womb to the tomb.:eek: :D

[KathiDG]

I agree with everyone as well. TRUST YOUR GUT INSTINCTS. When I was going through the headaches from Aug 2005 - Aug 2006, my neurosurgeon did a CT and shunt study with tracer..not sure if that's same as a cisternogram, but anyway...all that came up normal and he hooked me up with a neurologist and treated the headaches as migraines. She prescribed Topamax and some stupid muscle relaxer. NOTHING WORKED...no surprise there. My gut was saying "HELLO...SHUNT DYING...HELLO??" I went through an ENT consult, neuro-ophth consult, a Shunt Series x-ray (normal, of course), and ANOTHER shunt study (that time, it took 35 min and tracer still wasn't thru, so they pumped the shunt)...I think I should also mention that when I first got CTs in Aug 2005, my vents were SLIT LIKE (neuro's words). Had another CT in Jan of 2006, STILL slit-like, and I'd been having headaches the whole time....I just had the sneaking suspicion from get-go that the shunt wasn't functioning right for me anymore. I kept telling the neurosurgeon, but he kept ordering more test & consults...the guy had only seen me 1 or 2x before all that started, so he wasn't really familiar with my case....didn't have CT's from childhood/teenage years to compare with....BUT I say all that to say that I WAS RIGHT THE WHOLE TIME. My neurosurgeon finally came to the conclusion to put in the programmable in August 2006.

I guess the good thing that came of all of it is, now he has lots of tests how my brain/vents look when things aren't right...baseline MRI he had done on me when I first was referred to him wasn't actually a baseline at all, I believe because I was having headaches at that point too....so, now I guess I have leveled out...but DEFINITELY TRUST YOUR GUT...I DEFINITELY do now...I thought I was hypochondriac for a while thru all that.... :)

[Kristine]

I just love having this community to go to when I am worried about this stuff. I don't feel so alone!

Well, I wish I had some more answers, but it is the same song, second verse. I'm sure that most of you remember all of the testing that my poor daughter has gone through regarding these headaches. Everything always comes back normal. I just have a hard time with the diagnosis of PROBABLY being migraines. The ironic thing is that my poor girl didn't have a single headaches until her revision in 2005. She has suffered ever since then. The neurosurgeon keeps telling me that her shunt is fine and working properly. My gut keeps telling me that it is her shunt, though. And like the neurosurgeon told me one time, even if there is some intermittent malfunction going on, at what point do you decide to revise? I mean, her headaches aren't daily and are pretty managable in the fact that we now know how to handle them and what works well for her. I am keeping a log, though, so I can really see if there are any changes.

Thanks so much for all of your replies.

[Brandon's Mom]

Brittany got a shunt put in during Kindergarten and soon afterwards, the headaches started. They weren't REALLY bad, or REALLY frequent in the beginning but that didn't make it any easier to watch my little girl suffer in pain.

Brittany's headaches never did subside from that particular shunt because it was intermittently failing. The headaches eventually increased, then came the true migraines and we were left with no choice but to go in for a revision because she got to a point where there were as many bad days as good ones. I just hate that Emily might have to have the same experience YEARS of headaches. :(

My gut keeps telling me that it is her shunt, though. And like the neurosurgeon told me one time, even if there is some intermittent malfunction going on, at what point do you decide to revise? I mean, her headaches aren't daily and are pretty managable in the fact that we now know how to handle them and what works well for her.

Deja Vu woman! Been there!!!! Looking back, with the benefit of hindsight 20/20, I can tell you I wish I had insisted we tried a revision earlier than I did. It took us 3 revisions to finally get Brittany the relief she so needed (all done within a period of just a few months) and I wish I had gotten started with the revisions earlier because there were more issues having her go through it as a teenager than we would have had if we'd done it when she was still little and in grade school.

I've learned on this forum that many people with Hydro end up having more problems when they start going through puberty (particularly the girls because there are simply more hormonal changes going on), and Brittany is not the only one who experienced this. It was during puberty that her headaches turned to migraines and the frequency and duration got totally out of hand quite quickly. I know puberty seems like it is SO far away for Emily, but trust me, the years fly by quickly, and starting it early is not all that uncommon for people who have suffered neurological damage to their brains. :rolleyes:

I so wish we could look into a crystal ball and see if little Emily's headache pattern was going to go down the same path as Brittany's did. Knowing what was in store for her, would make the decision to do something NOW, rather than later, much less confusing.

{{{{Hugs}}}} to you and Emily.

[Lauren88]

Headaches suck! poor Emily! I have had intermittent shunt malfunction too, on and off for a year before they worked it out (I, never having been properly told about hydro symptoms didn't know what was wrong all I knew was I felt awful!!) In my experience I had to have a revision because at that point I was having double vision and all sorts but I just hope you can get some relief for that gorgeous girl! the pics are soo cute :)

[Suecr]

Well, I would say no. Hayley's NS said to me that in all of his experience, when it comes to a child who is truly sick, the mother's instinct always proved right. Every time Hayley gets her headaches, has a change in appitite, is abnormally cranky or lethargic I worry.