My DD continues to have headache, need advice!

[turk911]

Hello all!  I know many of you have children with chiari so I am here to ask a question.  My dd had a MRI which showed a 7mm chiari malformation.  She had the MRI for headaches.  SHe was treated for a sinus infection that was also revealed.  So, we visited two NS, one is a Children' chiari spec. and a NL.  None of them think she is symptomatic due to chiari, rather they feel she suffers from migraines.  Well, the NL put her on a Migraine preventative and we have given this ample time and recently upped the dosage per NL.  She has headaches everyday.  EVERYDAY she is in the nurse office at school to get ibuprofin.  This is our second migraine med.  Neither have worked.  We are having a spine mri with contrast done in July along with a shunt xray series.  Her headahces are not in the back of her head.  Her head aches in the forehead, or temples or on the right side near her eye.  She has 'jumpy' eyes and dizziness.  Other than that she doesn't show any symptoms. Oh yah, she has a slight curve in her spine, less than 10 but she is only 9 years old.  I am wondering does this seem like anything you have gone thru with kids or yourself?  with migraines or chiari?  It make me wonder if she does have chiari issues and not migraines, or am i making too much out of this...  her head aches everyday despite this medication.  any thoughts?  thanks so much...

[*Stormy*]

I have had years of sinus problems...not sure now it it really was sinus issues or the Chiari..but I get severe facial pain in a lot of the places you do with a sinus infection. So many others do too and you can see why b/c sinuses are natural air spaces in the skull...so if there is a lot of pressure in your head then I imagine it would cause pressure there too.
I hope this next MRI helps your DD get some answers!

Carolyn

[selmaS]

Yes indeed Shannon...most chiarians will have a sinus issue of one kind or the other...I have PND and reflux as a result.....and while in ICU I had constant drainage...it was soooooo bad that after aI saw my PCP he wanted to test it for CSF.....but I was givien a nasal spray and it cleared it up...

Call the facility that did the testing and ask for copies of the report and the MRI's ....they will prepare a disk for u...going forward, ask when u sing in for the tests for the copies and u get the disk b4 u leave...reports get mailed.

[turk911]

Hello! I sent in a post, but it never made it...wonder where it went...So my dd xray indicated moderate sinusitis.  She is on another round of antibiotics to clear it up.  I will say, we are week into the med and the headaches have decreased ALOT! yay...Slema do you know, is chiari related to sinus issues?  I htought I read that somewhere, but cannot remember where now.  My dd had a sinus infection when she was dx on her MRI in Feb. and now again in May...I am not sure what to make of it.  It does seem to e ahuge contributor to her headaches though...just wondering if there is a connection there.  We are having hte MRI done this weekend at U of M.  Our doc appointment isnt' for another month though, how can I get my results?  Do i have them sent to me, our pediatrician or what?  I want sort of have an indication of the results b/f our appointment.  I know the results are interpreted by a radiologist and a report is written.  I wouold like to have that...any suggestions?  Hello Amanda...My daugher was dx in Feb. but the docs don't think she is truly symptomatic due to chiari...we are having another MRI this weekend, but they feel she has migraines.  there are lots of parents on this website and they are so helpful.  The parents are terrific and willing to help with input and suggestions...very valuable resource with this tricky issue.  Hope you are handing the stress in stride!  You have a full plate with a baby and a daughter who is not well.  Keep in mind the community here is awesome, so if you need anything, ask!  
Shannon

[amandaj371]

hello shannon, my name is amanda I am from Oklahoma and my soon to be 5 year old daughter was just diagnosed with Chiari 0 with a syrinx. when was yours diagnosed? My son who is six hasnt had any problems with anything like this at all. I had a new baby in Decemeber and she showed similar signs like my other daughter did. Have you met very many parents on here with kids that have chiari? our neurosurgeon is great, im not sure if he is a specialist in this field but he knows his stuff. its so weird how doctors are ignoring these symptoms, especially in kiddos. well talk at you later. amanda

[selmaS]

Thanks for the update : )

I pray this is all that is going on for ur DD.....but it is more than enuff already too.....
praying she feels better soon.

"selma"

[turk911]

Hello again!  Well, the xray revealed "moderate sinusitis" so they are treating her with a strong antibiotic for 3 weeks.  Perhaps this is the source of her constant headaches!  This is the second sinus infection she has had.  Her first was in Feb and was found during the MRI and now another one.  Odd.  I hope the antibiotic will help provide some relief.  The next MRi we have is in early June so it should reveal more info and show if this sinus thing clears up...just wanted to update y'all on that.  Barb, I am sore as well and we have so much more to do out there!  I am moving like frankenstein.  Hope all is well with you and your son.  The weather has been terrific round here and I hope you are able to enjoy it!  Take care and thanks so much for all the chatting.  I will be back when I have some more info!  chat soon.  Shannon

[mikeysmom1995]

Hey Shannon,
My DS has had sinus issues all of his young life, we treat him with sudafed (have to ask the pharmacist as they keep it behind the counter now) and flonase. I hope that treating the sinus issue will bring her relief.
Your DD will learn her limits, it just takes the kids longer as they know they should be energizer bunnies!
We worked in the yard all day yesterday! Not moving so good today.
Barb :)

[selmaS]

Hi Shannon...many of us with chiari do have sinus issues....so if chiari does show up, u also want to keep in mind that the symptoms do cycle....they can come and go...

Please keep us posted on how ur DD is doing : )

"selma"

[turk911]

Hey guys!  SO, I took my dd to the ped on Thursday to discuss the headaches...so, she ordered an x-ray and felt that her issue may be more sinus then anything else.  So, I took her for the xray and started to give her some allergy med. as well.  Although she was treated for a sinus infection that was revealed on the first MRI, it never occurred to me that sinus could be playing a role...one track mind!  So, maybe she is doing better, I cannot tell...its too soon.  Just wanted to check in and fill you in.  Thanks so much for writing and posting for me.  I appreciate all the input.  I will continue to try and fish out symptoms.  My dd becomes wiped out from too many activities, so I try to limit them.  Much to her annoyance of course!  I'm gonna run...we worked in the yard nonstop this weekend and I am wiped out!  Thanks so much and will keep you all posted. Thanks again!

Shannon

[selmaS]

Thanks...from all I am learning as I am on my journey with chiari I am finding so many issues I have had my whole life and thought was normal is not...and how would I know?....more info on what type of BM how large...how often...ect and pains should be discussed......I never knew going once a week was not right....what parent tells their child about regularity?

And for those non chiarians it is just as important as it will affect their Health!!


Over the yrs going to drs I was asked if I had symptoms of this or that...how would I know....my dr said let me know if u bcome symptomatic...what does that mean?

Even the buzzing in my ears, drs asked do u have tinnitus?....the description is  ringing like a hearing test...well from my memory of that sound...itis nothing like the issues I have so I always said no...but now realize I do have it...so descriptions have to be clearer as well IMHO.....

sigh
"selma"

[Amethyst3]

Selma, that was a good point you made, to help a child recognize what may actually be normal or not.  When I was growing up as a child, and my legs got tingly a lot, I thought that it was normal and happened to every single person.  I was shocked & scared later when the subject finally came up somehow, and I learned that other people were not like that.

[mikeysmom1995]

Hi Shannon,

I agree with Selma, but it is hard to find someone to get another opinion from. But journaling her triggers is a great idea. My son doesn't have the typical in the back of your head type headaches, only rarely. Most seem to be in his temple area and over and behind his eyes.  I am not sure why it seems that so many people with Chiari get diagnosed as having migraines when headaches are one of the main symptoms of chiari. I also don't think they know how to treat these ha's so they just treat them with migraine meds.

Stress is a huge  trigger, and when he is over active too. Yesterday, he had a homeschool class with a group that we belong too, and the day before he was home, but  his weekend started on last thursday with a sleepover at one of our homeschool friends house, then friday late night at the show with his brother, then Saturday a bowling party and sleepover at another friends, then sunday went to skate park. He has also started to do some gymnastics as well. By yesterday even his speech was slurred because he was so wiped out, and had a complete melt down because he was like a noodle. On top of all of this he  has sleep issues as well. So there is no dealing with him when he gets like this cause he just feels like crud.  This is when we have to insist on some down time for him, because he just can't seem to go at this pace like most kids can.
As for homeschooling believe me I am no saint, as it is no picnic sometimes, but we get through it because I see a huge difference in his symptoms now. I do understand the homework issue as we had it with our son too, but now we control his learning environment, and have a great homeschool group that has been great support.
I can send our son out for the classes that I can not teach like biology, and geometry as I lost out on the smart genes in those areas, and they are taught by certified teachers, but only meet once a week, so not so stressful for him.
When I homeschooled our oldest one, he was my major challenge child. We butted heads on a daily basis. I think he spent most of 7th and 8th grade grounded because he did not want to cooperate where his schoolwork was concerned. Thank God he wanted to go back to High School and is doing great, as I probably would be in the looney bin by now if he was home still.
I agree with you about giving them comfort when no relief is available. I think that maybe you could push the doc a bit more to change her meds to something else. What is she currently taking?  Did your little darling have a CINE MRI? This checks the flow of the spinal fluid to see if there is any blockage or reduced flow?
Also, If she gets ha's when doing backbends that definitely sounds like a pressure thing to me.
Sorry for rambling Shannon, I watched  two babies for 11 hours today, and am feeling a bit numb.
Well many blessings to you and your family, and if you ever need to talk we can hook up. I think it helps to talk sometimes.
BArb :)

[selmaS]

Hi Shannon...I am sure the activities she is involved in are adding to her pains......stress, and many diff types of activities can also trigger HA's...u may want to try keeping a journal to see if u can pin point her triggers.

Keep in mind ur DD may have migraines, but then again I was dx'd with them too...and I am sure I may have had them at one time, but the chiari HA's dominate and I can tell the diff when I get one which type it was...

I would urge u to get another opinion.

"selma"

[turk911]

Hello Barb!  I am so glad that homeschooling has helped your son and his headaches.  My DD could have aggravated HA from school.  She had a learning disability, she is dyslexic.  She is easily overwhelmed by school work and it may bring on such headaches. She certainly stresses over her school work.  I never knew they could be triggered by stress though.   That explains a lot.   However, she also has them at home and on weekends.  Today, I had to pick her up from school b/c of her HA. I do not think I could homeschool my daughters, especially this one.  You are a saint!  I assist her with her homework regulary and read everything with her.  I try to be patient and calm and understanding, but we always end of bickering and carrying on.  She is a challenge b/c of her dyslexia.   A syrinx has not been mentioned at all.  The first MRI was only of her head and non of the docs thought she even had chiari issues.  Dr M did think she was a little crooked, but only a subtle bit.  In fact, I think she thought I was crazy.  I took her to the ortho and she has a slight curve in her spine, which he will keep an eye on with a recheck after our next MRI.  The curve could be related to Chiari or it could simply be genetic. My brother was treated for his scholiosis as a child with a back brace.  There is clearly a genetic thing there too. However, scholiosis I was told is a symptom.  But, the ortho felt that since nobody thinks she has chiari symptoms that is is probably genetic. Plus, he looked at her MRI and felt there was no crowding which would lead to the syrinx...  So far, all the docs think she suffers from migraines.  Which, I don't really think is the case.  I didn't feel that was accurate from the beginnig.  IMigraines are more vague than chiari, yet they don't feel she is suffering from that, on the MRI but some vague migraine issue that is untouched by her medication.  Just a feeling on my part though, I am no doctor.  I am frustrated today b/c she is suffering so much!  Barb, I hope things continue to run smooth with your DS adn that you are able to keep his symptoms at bay...its so challenging to offer comfort when there is no relief.  Thinking of you and your family, take care!
Shannon

[mikeysmom1995]

HI Shannon,
Good to know that she is having a complete MRI, plus shunt Xrays. I have not heard of the xrays, but it sounds like Dr. M is being very throrough. I know it is so hard to wait, though. Can you go out of hospital to a private facility for at least the MRI's as this is what we did and got in the same week.
Maybe the migraine preventative is agravating the HA's?
Most definitely stress is a huge factor. Selma told me this months before we even went to Chicago, and the doc just confirmed it. I'll tell you that when we eliminated the largest stress factor, his symptoms were drastically reduced. He still has his share, but we seem to be able to cope with them better now that things are calmer. Dr. Frim in Chicago said he could put our DS on meds if we wanted to send him back to public school, but he was homeschooled since 4th grade and only decided to go back this year, and skip a grade, so we are okay with him being home, as this was probably what sent his symptoms into a tailspin.
I don't understand why Dr. M thinks that the Chiari is not causing her symptoms. If it walks like a duck, right?  Has a syrinx been ruled out by her first MRI?
I know how hard  it is to talk about things with kids especially when they are so young as it is often hard for them to verbalize things. Our DS sometimes just clams up, and won't talk either, but part of this is teenageitis, so typical.
Again, so sorry your little darling is suffering so, and I know how hard it it is for you to watch this. I have been thinking about you too, and wondering how your DS was doing.
Always here to listen. Many prayers and Blessings. Barb :)

[turk911]

Thanks so much for all your input..Selma, i have thought of all those things.  Its hard to separate what is normal when you have always been a particular way.  I try to ask questions to get a real answer, but its tricky.  I did move up her MRI to June, but was unable to move up the Doc appt.So the doc appt is in July and the MRI in June.  She is having a brain and full spine done with and without contrast. Plus, she is having a shunt Xray series done.  I will feel better when I have the results of those...Her first MRI was done in January I think.  They will be done about 6 months apart.  The first MRI was only an MRI.  I think we go see the NS in June too.  Which is good to know.  she does get HA when she coughs, but not with a bm.  She is in gymnastics and complains terribly of headaches during her arch up where she holds it for a few moments.  I don't know if that is common for all folks or not.  I know i get ha from up and down a lot, like gardening and such.  Mikey'smom, i have been wondering about you and have looked for updates, but I must have missed it.  I am so relieved that surgery isn't necessary, but am saddened that he is still suffering...thats a bummer about the doc you traveled all that distance to see.  I am glad you got your questions answered, but I hate a rushed doctor.  I did not know that stress is a trigger...that certainly could play a role in her life esp. at school.  Dr. Maszuerko (sp) recognized that she has a chiari malfm. but feels it is not significant enough to cause symptoms and that what she has isn't a symptom of the chiari, but rather migraines.  I am unsure of this, since the meds are not helping.  We will see.  I am hoping that adj. the dosage will take more time and that this med will work.  I hate to see her suffering is all. which i am sure you can sympathize with.  I feel helpless.  I hope your son can get some relief with the measures you and your family have taken to keep him more comfortable.  Its just so hard!  Thanks so much for writing to me, I have been so curious about you appointment.  I am so glad no surgery, but like our case, also want results!  I will keep you posted on all this.  Oh hey, if you want a Doc closer to home, Dr. Maz. at U of M was very patient, unrushed and very pleasant.  Plus, the office was not delayed more than about 20 minutes. I think you said you had a bad exp there, but if you wanted to give it another chance, i would suggest her.  However, keep in mind I dont' really know her yet either, it was only one appt. which followed the worst one ever!  
Thanks again! shannon

[mikeysmom1995]

So sorry that your DD is still having so much trouble. My DS did not always have the true Chiari HA's in the back of the head, but rather more like your DD.  My DD does not show any overcrowding on MRI either.  We did see the specialist in Chicago and he did confirm that DS does have CHiari and said that if his HA's got worse he would start treating them with Migraine meds. So is Doc Murasko saying that your DD does not have Chiari?
I know that all kids are different, but just cutting down the stress factor for our son has helped tremendously. Since returning home from Chicago and getting the okay from the doc to resume activities he has started to have HA's daily again, so I am going to insist on some down time this weekend. WE have pulled him from public school and are homeschooling him and this too has cut down on his symptoms as his stress factor is lower. Dr. Frim in Chicago said that stress can trigger Chiari symptoms and make them worse, which Selma refers to as a flair in symptoms.
I too think that DD needs to have MRI sooner. Did she have the CINE MRI to check for flow problems?  I too wonder what kind of MRI is she waiting to have.
I sympathize with what you are going through as it is so hard to watch your child suffer so.
Be persistent with your Docs, and if you are not satisified with the one you are currently seeing, switch.
We chose to go out of MI to see Dr. Frim in Chicago. We weren't 100 % satisfied with him either, but we did get our main question answered which was Does he have Chiari or not, and he confirmed that he does. After waiting many hours to see him, we felt that our visit was very rushed, especially after traveling all that way. We know what to watch for now and know what our DSs triggers are, so for now we will just watch and try to keep him comfortable.
Dr. Frim said our son was definitely not a candidate for surgery which we were happy about.
Many prayers your way. Barb :)

[selmaS]

Hi...being an adult that did deal with symptoms as a child, may I suggest a diff approach to discover if she indeed is having symptoms...my reason is....if she is dealing with this daily, she may not know it is a symptoms and consider it a normal feeling or sensation.....such as a HS when straining for a BM....many like myself had no idea this was not normal....who tells u about this?.....if u always have something, it will not stand out as abnormal...so, u need to construct ur questions differently bcuz even as an adult, I found it diff to answer or know how to answer many  of the questions....I feel drs need to change the way and what they ask.

I hope Shannon I am making sense to u......a 9 yr old does not know how her body should work...meaning with out pain or a foggy feeling....ask if she has a problem on a swing, gets car sick.....Merry go rounds....how does it make her feel?...does she go on regardless thinking everyone feels like that.....it may help u understand that she does indeed have more going on that first thought....and u may find out she doesn't.

But, it will give a truer account of what is  or isn't going on with her......she needs to know, if u walk on a black and white checkerboard floor, u do not lose ur depth perception....and what that is...a sense she may fall.....ect....

As for the MRI what type is it?...is it another brain MRI, a cervical, thoracic or lumbar?
And how long ago was her last MRI?

Good luck
"selma"

[turk911]

Thanks so much for your input.Everyone we have seen feel that her MRI indicates chiari, but that is not the cause of her headaches and that there is not any crowding. Two NS, One NL, and our pediatric ortho looked too and none feel that is the cause of her headaches.Headaches and dizziness are her main complaints.  The NL noted her jumpy eyes on his visual exam. Nobody seems to feel that this is enough to sugggest chiari. Each doc has said that she is not symptomatic bc of she doesn't have typical headaches for chiari and has no other symptoms.  I just worry that since this migraine med isn't working we will then suffer thru another medication when we see the NL next time.He said it may take a few diff meds to find the right one. I just feel helpless and she is suffering!her chiari spec is at U of M Dr.Muraszko. So, any suggestions on what I should do now? Do I try to move the date of the next MRI? It seems that that test will rule out chiari or confirm it, correct?or is that wrong? We go back to the NL in June and will get a new med I am sure, but this all takes time...thanks for any and all input!shannon

[*Stormy*]

Just wanted to say that for a long time, I didn't get the "classic" Chiari headaches very often, mine were a lot like what you described. That is why I was told for years that it was just sinuses or allergies....I only really started to experience the back of the head ones when my symptoms got really bad. I did get a lot of pressure, facial pain all around my eyes and behind, ear pain and fullness from the beginning. So I am not convinced that these type of headaches can't be caused by Chiari.

I wonder who the specialist was too? I agree with Selma that if it's migraines it should begin to get better. Maybe you should consider trying another specialist to get a 3rd opinion?

Carolyn

[selmaS]

Hi...I do not have a child with chiari, but have it myself...we do have members here in the chiari forum that may be able to give a parents point of view.

There r too many drs that dismiss chiari symptoms....and I am curious as to ur "specialist" that saw ur DD.

If it was a migraine, which it is possible to have both, the meds would have curbed it...for chiari ther r no meds to help the HA's.

What other symptoms is she experiencing that makes the drs feel it is not symptoms of chiari?