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Newbie here....questions about 8 yr old daughter possible migraines?

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Posted 11/27/2006 5:08 PM (GMT 0)
Hi everyone, I am coming here to hopefully get some answers. If anyone knows of a forum just about children headaches, please direct me to it.

My 8 year old daughter has had a headache (sometimes severe, sometimes mild) for 2 weeks and 1 day now. I gave her children's motrin for 4 days before I decided to stop fooling around with her pediatrician and take her to children's hospital. Her headaches were very severe and I was frankly scared to death. They admitted her to the hospital and ran a CT scan, did bloodwork, a MRI a spinal tap and an EEG. She was discharged the next day and her headache was gone, she was given toradol by IV in the hospital. Her diagnosis.....acute headache? The pediatric neurologist there told us to treat the headaches at home w/ 2 adult 200 mg motrin. Well, the headache returned the very next day and I have been giving her motrin for it. It will go away for a few hours and then return. She has not had a full day w/out headache since she was released from the hospital.. She has thrown up twice with the headache. She has been back to her Dr twice since coming home from the hospital, she put her on Imitrex which did not work for her. I am at this moment waiting on a return call from the neurologist that she saw in the hospital.

Does anyone have any experience with child migraines. Does this sound like a typical migraine? She is complaining with the pain in the front of her head, she had the headache 1 week before she ever vomited with it. I have not ever been diagnosed with migraines myself. My grandmother does have migraines though but she did not develop them until her late 20's.

Any help or guidance is greatly appreciated. It is so hard to watch her in this much pain and not be able to help her.

Thanks!
Posted 11/27/2006 5:16 PM (GMT 0)
Sorry....I forgot to say that all her tests have come back good. We are still waiting on the "full" MRI report but the Dr. said that she felt comfortable in saying that it was ok too
Posted 11/27/2006 5:27 PM (GMT 0)
Hi lovinlife,

Welcome to Healing Well. I am sorry your daughter is suffering so much, it's awful to watch our children in pain like that! My younger sister had Migraines from the age of 7 until she was 21, and now they have completely disappeared. Thankfully she was not sick with them but would be in pain for weeks at a time!

My son who is older was diagnosed with Migraine with aura when he was 14 - he is nearly 18 now! Thankfully he has not had an attack for some time now, but is very sick with them!

Is the pain on one side of your daughter's head even though it is at the front? Is it a throbbing pain or boring or burning? Is she sensitive to the light or sound? Sadly migraine does run in families and it can skip a generation, as far as I know I don't think age of onset is relevant!

Please, if you are at all worried you must go back to the Doctor with your daughter, and keep going back until you are satisfied that they are doing their best for her. Did she see a Neurologist in Hospital? What you really need is a Neurologist who is a Headache Specialist!

Please keep in touch and let us know how she gets on. Take care

Ann
Posted 11/27/2006 5:35 PM (GMT 0)
I was diagnosed with Migraines at age 10- after a very similar situation. They hospitalized me, ran CT and MRIs, did the spinal tap etc etc. and after ruling out all the 'usual' suspects before they landed on the well suspected Migraine Diagnosis.

I would definitely seek out a second or third opinion. Was the neuro that your daughter saw in the hospital a Pediactric Neurologist? If not, try seeking one out. My mom found that the ped. neuro was MUCH more responsive and understood how the illness affects affects the dynamics of a family.

GOOD LUCK!!! Hang in there and keep us updated!
Posted 11/27/2006 6:18 PM (GMT 0)
Thank you so much for replying and for your kind words. It has been a lot on her. She has had to miss so much school and I have missed so much work as well. I am just so grateful that I have a boss who is very understanding.

Her headaches seem to always be centered in the front of her head. She also says they are not throbbing but constant pressure. She is sensitive to light , noise and motion in the car. Both times that she has gotten sick from the headaches, she has been at school and she said the lights really bothered her. When I picked her up at school today after she vomited, she slept for a good 3 hours. When she woke up she said the pain was in the back of her head but still was not throbbing. She also has difficultly in walking....keeping her balance.

She did see a pediatric neurologist in the hospital. I am not sure how to find a pediatric neurologist who specializes in headaches....does anyone else know?
Posted 11/27/2006 9:28 PM (GMT 0)

Hey lovinlife,

I had my first migraine around age 8.  I would come home from school with all the typical symptoms, intense headache, sensitivity to light and noise, and nausea.  My mother didn't recognize them as migraines.  She called them "hunger headaches" and assumed they would go away as soon as I ate dinner.  As soon as I got home from school, I would climb into my bed and hide from the light.  I closed my window shades, and stuck my head under my pillow.  I was totally nauseated, so the though of eating dinner was totally gross.  I never took any medication that I can remember, and usually after sleeping all night the headache would be gone.  My mother just didn't realize how serious my headaches.

I finally started getting treatment at age 13.  By then, I was getting jabbing pains in my head, like someone was stabbing me with an ice pick.  The muscles connecting from my neck into my skull began to knot up into hard little bumps.  This was always a pre-curser to a migraine starting.  I was originally treated with Flexeril (a muscle relaxer) and Fiorinol w/codeine (a pain killer).  This worked for several years, up until the middle of college.

It's now been 33 years of migraines, and they are now out of control.  I've been searching out specialists for the past couple of years, and I've been referred to another specialist, who is a neurologist who concentrates on migraines.  He works at the University of Virginia Medical Center, where I've been seen by a pain specialist.  I've been through every medication used for migraines, and have gotten to the point where only narcotics will truly take away the pain.  This is not a popular method with doctors, which is why I continue to search for answers.

My advise would be to see if your daughter can be put on some kind of preventative medication.  Many choices are out there, but I'm not sure what can be used on someone that young.  Please stay on top of the doctors, and if they aren't doing an adequate job of managing her migraines, look for another specialist.

Best of luck and let us know how things go.

Leigh Ann cool

Posted 11/27/2006 10:39 PM (GMT 0)
Her neurologist wants to put her on Topamax daily and I am to make an appointment with him asap. A good friend of ours told me that he takes maxalt - mlt dissolving tablets for his migraines and it works wonders so I mentioned this to the pediatricians nurse today on the phone. Her pediatrician called her in a prescription for it right away along with the Topamax so I can only "assume" that she is familiar with it. Her dr has been pretty honest in telling me that she has never dealt w/migraines this severe in a child so I am a bit worried. Are these drugs "safe" to take at her age. I know that no drug is completely without side effects....anyone have experience with either of them?
Posted 11/28/2006 5:42 AM (GMT 0)
Topamax was used for several years as an off label migraine preventative.  This is when I took it.  While I never had any negative side affects, the drug unfortunately did not work for me.  However, LOTS of people have found it to be very helpful as a preventative.  I know that some of the more common side effects include weight loss (I did experience lack of appetite) and mental confusion after longer term use. 

GOOD LUCK! and hang in there!!! 

Posted 11/28/2006 5:54 AM (GMT 0)

I took Topamax for several months, and it never did anything to prevent my migraines.  However, I had major side effects from it.  My brain virtually turned to mush.  I couldn't finish a thought or a sentence.  I couldn't think of simple words when I was trying to talk.  If it were my child, I would absolutely not put her on it.  There are many other preventatives that I would try before Topamax.  Maxalt works for some people, but it didn't work for me.  I hope you can find answers soon, and save your daughter from a lifetime of misery.

Good luck!!!

Leigh Ann cool

Posted 11/28/2006 3:03 PM (GMT 0)

Hi lovinlife,

There is very mixed views out there on Topomax from what I have heard and read! It is a medication that I was very nervous about taking, but did go on at the recommendation of my doc. It is something that only you and your doctor can decide what is best for your child. I did have side effects with it, but they seem to be gradually going away as time goes on. I haven't been on it for that long, so I am to new to this medication to speak as to the effectiveness of it.

In your post you said that your doctor hasn't treated someone this young with a case of migraines this bad, you may want to try finding a doctor who specializes in headaches or a clinic who specializes in them (it may give you a little more help). I'm not sure where you live, I go to one and there are several others who post that see them..

Best wishes to you and your daughter. Any questions, just ask!!

Posted 11/28/2006 5:35 PM (GMT 0)
I did read the side effects from Topomax and they do make me nervous....especially with her being only 8 years old and a lot of school years in front of her!!

I have another question.....when you have a migraine does it ever really go away? We have been doing the number scale since she stared with these headaches and when they are bad, she says they are a 9 or 10 but usually (like today) she says her head feels like a 5. She says it is not killing her but she does not want to go anywhere because she is afraid of the lights.....she said that they will make her sick. This is a girl who LOVES school and for her not to want to go is a very big deal. She misses her friends and is getting very aggrevated with feeling bad. It just seems like the headache would go away sometime completely after 2 weeks.

I am looking for another pediatrician (she is the one who does not deal w/migraines) and we are supposed to be getting an appointment with our pediatric neurologist asap. We are in East TN if anyone knows of a good clinic that I can take her to.
Posted 11/28/2006 8:01 PM (GMT 0)
The hard thing is that migraine is a very tricky condition from what I am just starting to learn! When you get into a chronic pattern which it sounds like your daughter is in, which I have been in (was hospitalized for), and am starting again (only on day 4 though), you need a really good doctor who knows the medications out there and exactly what they are doing. Yes, you can be in this continous pattern that you refer to where the migraine never really goes away. They referred to this condition as status migranious for me as one of my issues (I also have a couple other migraine/headache types).

Unfortunately, I don't know anything about what they do for kids. I know they try a medication called DHE usually in IV form for 5 days or so in the hospital to break this cycle for adults and I saw several older teenagers with their parents (16 or so) on the unit and you can research it on the internet, plenty of information to be found. There is also things that can be done with steriods, I get shots of them. I wish I could be more help to you, I really feel for you and your daughter.

I live about 10-12 hours from you and there is one by me and I'm not sure if they treat kids that young...If you are willing to travel and your insurance gives you that flexibility, the one option you have with some clinics is that you could call ahead, find one, set up an appointment (they usually do a good phone interview), and then you come for your first appointment which is generally long. Alot of them that I have heard about, will have you come prepared to be hospitalized to get you better if your condition is that bad...I will try to do some searching this afternoon and see if I can come up with anything closer to you (unfortunately, most of the people in the hospital on the unit with me were from your area down south--so I get the feeling there may not be one, but I could be completely wrong---I could be under the wrong assumption--they just all traveled sooo far to be there for help!!).

It's great that your daughter has such a wonderful mom who is there for her!!

 

Posted 11/28/2006 10:41 PM (GMT 0)
Oh wow...I am SO grateful for your help!! Right now at this minute she says her headache is a 1 and I am about to jump for joy!!!! It does seem to get better in the afternoon and then again worsen at night and in the morning...is this the way yours seem to work? I am keeping my fingers crossed that it will not come back tonight though and that she may be able to return to school at least for half a day. Our neurologist did not call us back today to schedule her appointment and that frustrates me. I know they stay very busy and I realize that we may have to wait quite a while for an appointment but I was hoping to go ahead and get it scheduled at least.

Bless her heart, her headaches have turned our household upside down for the past few weeks. After reading some of the forum, I feel so bad for what everyone here has had to endure. It truly frightens me that she may have these for the rest of her life.

I sincerely hope that you will find some relief for your migraine very soon and again, I appreciate your help!! BTW, we live in Athens, TN which is about 40 miles south of Knoxville TN and 40 miles north of Chattanooga, TN. I have been researching a bit on the computer today but I have not had much luck so far.

April
Posted 11/28/2006 11:43 PM (GMT 0)
You know I googled the migraine known as status migranious and found out that this type of migraine is usually brought on by medication. Her pediatrician prescribed her "Omnicef" for strep throat on Thursday, her severe headaches began on Sunday. I am almost certain that this is why she is having these migraines because when I look into Omnicef, I found out that it should not be taken by individuals who have had an allergic reaction to Penicillian and my daughter has. This is on her chart at both the dr office and the pharmacy. I know it is partially my fault because it got by me too. I hate medicines....I really do
Posted Yesterday 12:00 AM (GMT 0)
Okay first of all this is not your fault--we are parents and do the best for our children!! You are doing everything you can and none of this is your fault. The doctors should have caught that your daughter is allergic to that medication that is their job!!! Do not blame any of this on yourself and this may not be what is going on.

Mine was probably from the continued use of OTC pain medication & I was told they don't know what cause it for sure. I have young kids and would do anything for them. Believe me, while I was in the hospital my son got an infection on his scalp and I blamed myself for not being there.

I am going to see if I can find a headache place by your area let me do some searching, I just wanted to reply to your e-mail...This is not your fault and this may not be what is going on, but even if it is, you had nothing to do with it! I know what you mean about medicines!

I am so glad to hear your daughter is at a 1..YEAH, that is great! Unfortunately, the pattern you describe is mine, but that also fits the time span of my medications. I use certain pain meds that last certain time spans...

Post Edited (mommyto3) : 11/29/2006 6:34:28 AM (GMT-7)

Posted Yesterday 1:39 AM (GMT 0)
Thanks so much for the kind words....I cannot tell you how good it feels to have someone to talk to about this!!
Posted Yesterday 4:20 AM (GMT 0)
Hi...I usually post in the fibro forum but this topic caught my eye....I just wanted to say that my son was DX'd with migraines at the age of 2!...It was very scary...migraines run in my family, including myself. I cant remember what they put him on for them at the time. Fortunately, they have lessoned considerably and now only gets 1-2 a year...he is now 9. I am sorry your daughter is having these probs at such a young age. I hope you can get some answers and relief for her soon...Take care!
Shelly
Posted Yesterday 4:52 AM (GMT 0)

Hey lovinlife,

Glad you are getting some input from some good people.  Most people that are living with migraines have all done a lot of research, which saves "newbies" time in researching the condition.  I, too, have gotten a referral to a migraine specialist.  When you find one, be prepared to wait to the them.  The earliest appointment available for my new Neurologist is MARCH 7th!!!

It seems like an eternity, especially since my PCP stopped my migraine meds (narcotics) cold turkey, which were the only thing that was giving me relief.  I don't know how I'm going to make it for four months.  I'm going to see if I can find a new PCP or see if the pain clinic I'm going to this week will do something for me in the meantime.

Good luck and let us know what you find out.

Leigh Ann cool

Posted Yesterday 1:49 PM (GMT 0)

Hi lovinlife-

I looked last night and didn't come up with a whole lot in your area. I found one website that lists a few, but they do not specify if they treat children. Go to helpforheadaches.com (hope I can post this here). Then click on the doctors/clinics link and it will bring up the regions and go from there. If you want, just give them a call and see if they work with children if you think they might be a match for you. Even if they don't another thing you could do is ask them if they know of anyone who does, they may be able to give you some names of who does.

I have been pretty lucky with my specialist in getting in, so hopefully they vary by state/specialist clinic as to the wait (Leigh Ann that really stinks that your wait is that long, I can't even imagine).

This is just my experience, and I hope it helps some. Take care!

Posted Yesterday 6:57 PM (GMT 0)
Hi-

Just a few comments.

I've had migraines since I was born. I was diagnosed with them before preschool. Ask your daughter if things look shimmery while she has a migraine. (If your doctor hasn't already...) if they do, she might have auras accompanying her migraines. I'd suspect this is the case especially with sensitivity to light. Its just another data point to throw at a neurologist once you get one (and yes, the good ones have a good waiting period ... although for rare cases/emergencies a good doctor will squeeze you in)

My suggestion to you is to start documenting, documenting, documenting. You mentioned already that this started after some strep throat medicine - so hopefully that is it and the migraines will go away for good once it is out of her system. If not keep track of foods ingested, activities, etc. Look for patterns. Bear in mind something that happened the night before can trigger a migraine in the morning, etc. It doesn't have to be instantaneous.

good luck. I know it hurts to have a kid with migraines (having been the kid) ... I have a son now who is 16 months and I just keep praying he hasn't inherited the curse
Posted Today 2:14 AM (GMT 0)
I do not know if it was a good thing or not but I took her back to her old pediatrician today. We had changed because of a recent move but I believe he knows her much better and whether he can do any better for us , it gives me a little peace of mind. All he wanted to do today was to change the pain med to Migrin A (which does not really seem to be helping tonight.........she is just very groggy). She was headache free for a brief time today and she is just exhausted. Her appetite is almost obsolete. I do not know if it is just me but I have noticed tonight that it seems like her forehead is a little swollen. She says it is numb to the touch right now. I am going to call the neurologist again tomorrow to see if they have an appointment set up yet. I can understand that it may be a while before we get in to see him but why is it taking so long just to get the appointment. It looks as if the nearest clinic is 4 hours away but of course we will swing it if we need to . I plan to call them in the morning as well.

Thanks again for everybody's input. I really appreciate every piece of advice you can give to me.
Posted Today 2:32 AM (GMT 0)
Lovinlife:

Keep on em like you are! You daughter has one hell of an ally in her corner!!!!!

Thats great you were able to take her by her old ped. It was probably somewhat reassuring to your daughter to see a doctor that she actually recognized......all the specialists must be frightening for her.

Keep on Keepin on!!!!
Posted Today 2:43 AM (GMT 0)
Thanks for the pep rally, GoBucks26.....I needed that! I know deep down I am doing all I can but I have a 100 moms / friends / grandparents , etc. asking me each day "have you done this" . I know they mean well, everyone is concerned and I have received some really good advice, but I question everything I do..... What I really want to do it run her back up to Children's Hospital and say, "hey, I am not leaving here until you give her some relief for at least a 24 hour period".....is that asking too much?
Posted Today 11:59 PM (GMT 0)
Well...we have an appointment on Dec. 11. I really do not know if I can wait that long to take her anywhere though. I am just torn up thinking that my baby may have a tumor!! I do not trust the pediatrician that I took her to and I am not even sure that the full report from the MRI was read by her or anyone else for that matter. Is numbness normal across the forehead? She cannot feel it when I tap on her forehead, is that normal???
Posted 12/1/2006 1:12 AM (GMT 0)
Dec. 11 is a good day- my bday! :) I wish your appt. was sooner, but thank God it's before the New Year. I'd say to stop thinking up 'what ifs' but I know both my parents did it when I first had Migraine problems. To make you (hopefully) feel better, know that MRI's. ct scans and even plain old xrays are read by many doctors- from the neuros and pediatricians......but before they get their hands on it- Radiologists read them. That is the sole job of a radiology doc. So try to have some faith in the MRI :).

As for the numbness in the forehead, I do not know. It could be a result from being snowed out by all the meds she has been on. Hopefully, that is what it is.

:) Good Luck!
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