Migraine

I am sitting here at my computer with tears welled up in my eyes. My heart aches to be able to just kiss it better for my daughter.

A little over a month ago, I brought my daughter, Emilia, to a pediatric headache center in Cincinnati. The appointment went really well, and we left that day with a treatment plan (new preventaive meds, better acute plan) and great hopes that we finally had found something that would help. It seemed so worth the drive to and from Chicago to get there/home.

Fast forward about 6 weeks and things are worse now than they have ever been. Not only are the migraines more frequent (she went from an average of 1 a week to 7 or 8 last month) but the severity seems to have increased as well. At least twice, I was ready to take Emilia to the ER. The $250 copay and fear that they wouldn't want to do much for a four year old kept us at home. I have since talked with a nurse from the headache center and told that if things are that bad and I take her to the ER, they (Cinci) will give them orders as to how to treat her.

I am just so tired, and not sure how to deal with this pain. Emilia becomes totally different during a migraine. She screams and yells. Refuses to drink her sports drink. I have to force the acute medication into her mouth and hold her down till she swallows. She cries and carries on screaming about things that are not based in reality. Sometimes she makes no sense at all. All this from a normally sweet and compliant little girl.

So now that Emilia finally fell asleep, I have come here to cry on your collective shoulder. I know I don't have the ability to do this on my own. I'm just not that strong a person. I hold it together when my baby needs me, and somehow get her through the toughest times. But when its over (or I at least get a break) I feel like a washed up dirty old rag. Like all of the good things have been sucked out and I am left with the remains of all the yucky stuff. I need to regroup and find hope that things will improve. I thank God for leading me to a place like this where there are others who understand and so willing to help.

Thanks for indulging me,
Kim

Kim,
I do not have young children with migraines, but I have children who have been sick. My heart goes out to you. Please know you are always amoung friends on this site and venting and finding support is one of the things we do best.

There is so little a 4 year old can understand about what is going on the sweet thing when she is in so much pain and how you are trying to help her.

I know others who have been through this will follow to give you their support and maybe some tidbits of advice. For you some and a suggestion of something to help you relax, a silly book, a bath or shower.

Take care and keep writing when you can,

Cindy

Kim, I can't stay here long as I'm in bad shape myself tonight, but I wanted to give you some hugs. I'm sorry it's rough for you right now and my heart truly goes out to you and your daughter.

Kim you are strong enough - you have all of us here with you. You did the right thing by coming here.

I hope things are better today.

Kim,

Oh my - a four year old with migraines - I am SO sorry for her - AND you! My 16 year old son gets them (and has since he was 8) - so I kind of know what you're going through. At least mine is old enough to understand what is happening and can take his meds on his own now...it took us a LONG time to get there. He's thrown up in my brand new car, passed out at school, and had to be carried off a baseball field. He is now aware of what's going on - no more denial - and will take care of it immediately. But a 4 year old? How do you explain the beast to her? I really feel for you and hope things get better for both of you.

Here are some hugs and good luck wishes. Feel free to vent anytime. Believe me, you're in the right spot.

Hi Kim, I am so sorry about your daughter. My son who is now 11 started to get migraines at age 2 so I know exactly what you are going through. I have been where you are now and my heart goes out to you. Have you tried to put an ice pack on your daughters head for some relief? It took the edge off for my son at that age and he would eventually fall asleep.The drug he took was Midrin when he was little but he now takes Imitrex to abort the pain. He also takes Topomax as a daily preventative and Magnesium Oxide daily at 400 mgs. I'm not sure what has been prescribed for your daughter but have you looked into a preventative treatment? Please know that all of us are praying for you and you are not alone. Keep your chin up and take care of yourself.

I am so glad that you came here to vent. Trust me, I did it recently too. My daughter is 17 and we have been going through the constant pain for almost 2 years. Yes, she is old enough to understand but sometimes I don't think it makes it any easier on me or her.

Keep up the faith. I am going to pray specifically for her that she can just get some relief and rest. You try to rest too and please keep us posted on how you are both doing. This isn't easy but we can atleast talk to each other and keep encouraging each other.



Melanie
lovemykids411

Thank you for listening. It means a great deal to be able to share this burden rather than suffer silently on my own.

Emilia woke up this morning as if nothing had happened. It amazes me how resilient kids are. Dear old mom was tired and grumpy after laying next to a flopping, moaning, fretful little girl.

To answer your question about preventatives, yes, Emilia does take one, Cyproheptadine. This is actually the fourth one she has tried. The Neurontin did not seem to do anything, she had an extreem adverse reaction to Topamax that resulted in a hospital stay, and Propranolol. Right now, the Propranolol seemed to at least have helped a little as the migraines have been so much worse since she began weaning off of it. In addition to the Cyproheptadine she also takes 100 mg of CoQ-10 as her lab work showed she was deficiant as well as an iron supplement for anemia.

For acute treatment, the doctors at the headache center reccomended having Emilia consume 6 oz of a sports drink at the onset of a migraine (hard to really know that with a four year old who would rather die a thousands deaths than admit she has a headache these days) and take motrin (at a higher dose than is the standard one listed on the box). The Motrin can be repeated one time in three to four hours if needed. I am also now trying Napersyn in a liquid form as an alternative to the Motrin.

Beyond that, we are stuck to just ride out the migraine. We return to the headache center in early June for a follow up. I know there are other preventative meds out there, but many of them are not appropriate for a child as young as four. We'll see what they come up with. The nurse I spoke with a couple of weeks ago said that there wasn't much more they could give her as an acute treatment. Narcotics can make things worse in the long run she explained, and Triptans are not an option because of other medical issues. That doesn't leave many options other than the IV fliuds, compazine and toradol.

Thankfully, Emilia typically is better after extended sleep. She doesn't have migraines that last for days on end. I feel so helpless and overwhelmed dealing with her for the 6-18 hours of the migraine. I don't know how you mothers do it day in and day out every day with kids that have constant migraines. You have my full admiration. What a testimony to a mother's love.

Again thank you!
Kim

Kim, I'm so glad to hear that Emilia is doing better today. And good for you for hanging in there. I know that must be so hard on you, seeing your daughter in pain and not being able to take it away from her. I'm glad we can help you get through this.

We have some ER forms on this site that may help you out. You mentioned you weren't sure if the ER would be too willing to treat your daughter since she is so young, and you also mentioned that the headache clinic would be willing to call in orders for her. I wanted to give you these as another option as well, to fill out in advance and bring with you. There's one for Emilia's doctor, and one for you to fill out.

ER forms

We're always here for you - come vent to us as much as you need and we'll always help as much as we can. I'm thinking of you both.

Kim

I'm so sorry that you and Emilia are going through this right now. My son has been having migraines since age 5. Things have been awful for the past year and a half for him (and me).

You are so much stronger than you know. You really are. You are doing everything you can for her. You have taken her to the best doctors you can find. You are educated on her disease.

I have been where you are many times. Sometimes it is so exhausting to deal with all of it.

Hang in there. This can get better. The older she gets the more options that will open up for her with medication.

Try to enjoy the good days. Make sure that you take care of yourself too. Know that we are all thinking of you and are here for you anytime you need a shoulder to cry on.

Jean Ann

Kim,
Im ss I am late on this! Been hard to keep up with forums this week!
I think you are doing a wonderful job keeping yourself informed, and taking her to the best doctors!

I know how hard it is to try to explaine to a 4 year old why he is in pain and to calm them. Its so hard and taxing on the momma! But you are right. Children are very resiliant!

My son has had various health issues his whole life. Unfortunatly I passed my migraines on to him too. He is 9 now, but first started getting what we were pretty sure were migraines at age 4, after a bout of Viral Menengitis. He has since had viral menengitis 2 more times amongst many other serious illnesses. With his low immune system, it was very hard to tell if it was a migraine, or yet another cold or viral infection coming on. He caught a cold weekly, so that made it hard.

Add on top of that numerous food allergies.. anyway the list goes on. He has been doing better with frequent illnesses in the last year, and the migraines really were obvious. Right now he has 1 a week or so. He takes Maxalt for them, but isnt on a preventative yet. His Neuro doesnt want to add that unless he gets to 2 or more a week. His migraines usually last 24-48 hours.

Anyway hang in there hun! Things will get easier as she gets older, and starts to understand. It wont take long when she realizes the medicine mommy gives her makes the pain go away! For now Im glad you found us and come cry on our shoulders any time you need!

Tawsha and TJ

Hi Kim,

I sure am glad that Emilia is feeling better! I'm a chronic migraine with aura sufferer and my 5-year-old son was recently diagnosed with migraine, too. His migraines are very infrequent right now, so preventive meds are not necessary for now.

I just wanted you to know that I totally understand the helpless feeling you're describing! I also struggle with the guilt of knowing that he apparently inherited this condition from me (my DH's family has no migraine history at all). It's incredibly difficult to watch your child suffer with migraine pain. I know I would personally suffer 1000 migraines if it would take away just one of his...

Please check in every now and then to let us know how Emilia is feeling! I'll keep your family in my thoughts and prayers!

jenny

I'm late seeing this, too, since I wasn't on the forum yesterday.

I'm so incredibly sorry Emilia is having to deal with all this. No precious little critter should have to, period. But she does have you, and you are much stronger than you realize. And you both have all of us cheering you on.

I wonder, since you said Emilia is anemic, if perhaps that might have any bearing on the migraine front. I know that anemia can come with headaches, and I know from my own recent experience that it did affect my migraine patterns to an extent. That might be something you ask the doctors in Cincinnati about.

I'm glad the Cincinnati clinic will help with orders for treatment should you have to head to the ER, too. There's a lot of peace of mind when clear-cut steps are in place.

I'm thrilled to hear she's better today. Keep hanging in there, okay? And come here anytime.

My daughter who is now 6 began her migraines at the age of 4 and they were very severe. This spring they have been as well controlled as ever. I remember the horror when she was at her worst and my heart truly goes out to you guys! Hang in there, there will be relief in your future no matter how remote it now seems. My daughter has cognitive changes during her migraines and somewhere there are even old postings of mine about how to handle her when she got like that. She doesn't think straight, can be illogical (more than what is normal for her age and what is normal for her), and gets very angry at times during some migraines. It seemed like the partially treated migraines resulted more in anger than the ones that were the worst b/c those just knocked her out. One time she cried to me that she couldn't stop saying and doing mean things but she just couldn't stop (last year during a bad bout). I really feel your pain and wish the best for you guys. I offer hope. Lauren is doing so well right now. She has weaned off all the other medicines and is now just on nadolol and singulair (allergies seem to lower her threshold for getting migraines, thus the singulair). During her sickest time things seemed so bleak at I had days that felt hopeless. Hang in there. It sounds like you are advocating for your daughter. My thoughts and prayers will be with you and your daughter!!
Lynn

Kim,
I am so sorry to hear about your daughter. I suffer with Migraines and have also passed them onto my son. He started at 5 years old. He is 8 now and started getting them 2-3 x a week about 5 or 6 months ago. One of his major trigger is stress. Any change of routine, going to a Flyers game, to the movies anything exciting. We tried diet, he had an MRI. I was a wreck!! It is one thing for me to be sick with the migraine but, to watch your child is so much worse.

His MRI came back fine, it did show some sinus issues. He started on claritin and surprise to say his migraines have gotten better! Now he is down to 1 a week and they aren't too bad. I have since stopped the claritin to see if that helped and so far (knock on wood!) he has been 2 weeks w/o claritin and only 2 headaches. Sometimes the simple things can work also. Check into allergies (food & environment) My son definately has Migraines but, I think he also has allergies that make the migraines come on more often.

Good luck, you have come to a great place for advice and support. I posted for the first time a couple of weeks ago (David was really bad then and we were waiting to get a MRI) I can't tell you enough about how wonderful everyone here is. We all understand, you will get through this. Don't give up, you will find the help you need.

Cheryl in NJ