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Daegan12, Nurse
Category: Health
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Experience:  I have many years experience as a nurse, and have worked in many areas. I have worked with people of all ages.
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My son was diagnosed with migraines 2 years ago. He's only 4

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My son was diagnosed with migraines 2 years ago. He's only 4 years old now almost 5. We think he was having these episodes as a baby too though and wasnt able to tell use what was wrong. As a baby\infant I would take him to the ER or his Dr when he was having these episodes where he would cry out in pain and if he was walking at the time he would freeze,yell out and put his arms out like he's steadying himself and sometimes drop to the ground. When I would go pick him up he would squeeze me so tight and he would grind his teeth and squeeze his eyes shut. He has to stay in the dark during these episodes because light hurts his eyes. Also he has to pretty much stay bedridden or on the couch the entire time which would last 3 days. Now the episodes are lasting 4-6 days and its ALWAYS cycles every 3 months. I know when to be ready for it. It happens in the middle of Jan,April,July,and Oct. And during these episodes he wants to hold his head tilted to the side and down in between the (really)bad pains. My son is now 63 pounds and I have to carry him to the bathroom during these episodes because if he gets up usually within 10-20 seconds it brings on really bad dizziness. He told me last night that it felt like his head was spinning. And when he does this he squeezes his eyes shut and clenches his jaw. I try to get him to open his eyes but he acts like it hurts too much to open his eyes. Over the years he has had a CAT scan,EKG,EEG and recently a MRI. The CAT scan 2 years ago only showed sinus congestion as did the MRI. By the way as a baby the Dr's at the ER would always say he had a sinus infection and would put him on antibiotics.(He never had a runny nose,cough,red ears or anything like that. So it would irritate me that they would just put him on antibiotics). The antibiotics didnt do a thing for him though. The episodes still lasted the same amount of time and the severity was the same. Anyways currently he's been seeing a neurologist at Children Hospital in Columbus for 2 years. Its been a long 2 years. I feel like they dont even care about whats going on with him because they only happen like 4 times a year. But they are happening for longer periods of time now. And I understand that they have a lot more serious cases there to attend to but my sons comfort is very important to me and its so hard to see your child go through this and not be able to take the ouchy away. We have tried compazine and phenergan PO during these and they did nothing. He's had IV of these same things and they made him sleep but the morning after it would be just the same pain,light senitivity and dizziness. He is now on topamax BID because of my insistence that they needed to do something to prevent them but evidently its not working because he's been on it since January and he is still having his episodes now in April. I've researched this since he was a baby and but still cant figure out whats wrong. I've never posted anything on the net before but I'm getting desperate and would love to hear someone else's suggestions. My family and I are just tired of this and need some new insight as what to do.
Submitted: 5 years ago.
Category: Health
Expert:  Daegan12 replied 5 years ago.
Daegan12 :

Hello. My name is ***** ***** I will be happy to help you the best I can

Daegan12 :

First I want to start out by saying I am very sorry that your son has so much pain. It is very hard on you and him in this situation.

Expert:  Daegan12 replied 5 years ago.
With migraines it is very important that you limit sugars, and caffeine as these are triggers and can bring on migraines. Also you may want to eliminate coloring in food. Avoid things with artificial coloring as this has been proved to be a trigger for migraines as well. The medications compazine, and phenergan are used for nausea which comes with migraines. Those will not help with the actual pain itself. Motrin can be used for the pain and allowing them to rest in a very dark room. Sometimes migraines can be controlled with some lifestyle changes. Reducing stress, and eating healthy can sometimes make a huge difference. I am very glad to hear that they have done the CT scan and MRI's. I would also have them check his ears well. Pressure in the ears can create horrible headaches in children. Ear infections could also cause head pain. I would suggest sticking to the limited sugars, caffeine, stress, food coloring and see if that makes a difference. I have never heard much positive about the Topamax in kids with migraines. I hope all turns out well for you and your son and please keep me posted on how he is doing.
Customer: replied 5 years ago.
I have already restricted his sweets and he never has caffeine.I have researched this a lot over the years and I know what the triggers are and try to keep away from them as well as him getting plenty of sleep and fluids. But nothing has helped like I had said in my post. And I'm not so sure that it's migraines anymore which is why I was wanting someone else's opinion on what to do.
Expert:  Daegan12 replied 5 years ago.
Have you had them check his ears at all? Built up pressure in the ears can cause severe headaches as well
Customer: replied 5 years ago.
Not sure if this is what you mean but he did see a ENT when he was 3 due to swollen tonsils and ended up getting then removed at Childrens Hospital. And at that time they checked his ears to make sure he didn't need then drained.
Expert:  Daegan12 replied 5 years ago.
There is also something called "cluster headaches" which occur in children and can occur every few months and last for a week at a time in some situations. I would also suggest having some of the tests repeated, or even going in for a second opinion. Just to make sure nothing was missed. I would have them draw up labs which I am sure they did do at one point but I would have them recheck blood counts, and electrolytes to make sure there is not imbalance. This is very difficult I am sure. It is hard to see your child hurting and nothing seems to help. If it is in fact true migraines children can out grow them. If he doesn't out grow them there are stronger medications that can be given however are not safe for his age at this time. I encourage getting a second opinion and having the testing repeated as well as labs drawn. I really do hope things improve soon.
Customer: replied 5 years ago.
he has had labs done several times and they have came back normal. And they did check his electrolytes again in Jan and they were fine.Is it common for the severe dizziness and not being able to walk with the cluster headaches?
Expert:  Daegan12 replied 5 years ago.
They actually can cause dizziness which would make it difficult for a child to keep his balance. Being off balance would make it difficult to walk. However, dizziness and difficulty walking is certainly common with migraines. The one thing that stands out with cluster headaches is that they often come every few months and often last a little longer then the typical migraine. In your son's case it may be a mix of both. Migraines and cluster headaches. Cluster headaches are the least common type of headache and often takes quite awhile to diagnose. There are medications such as Verapamil which is considered a preventative medication. If nothing else works there is actually a surgery that can be done in people that have these headaches very often. The surgery is done to block the trigeminal nerve which is the nerve that causes the extreme pain in cluster headaches. I hope this has helped you, and again I hope all turns out well.
Customer: replied 5 years ago.
I didn't know that the cluster headaches could have a pattern like that. With his being every 3 months maybe thats what it is. His neurologist told me that migraines didn't cycle like that and I asked him on several different appointments why his were so predictable then. But he didn't have an answer for me. I wonder why he hasn't looked into the cluster headaches with him.
Expert:  Daegan12 replied 5 years ago.
Cluster headaches are the least common and they are usually very difficult to diagnose. It usually takes awhile to reach that diagnosis. You can talk to you primary care doctor about the chance of it being cluster headaches. Being that he has them every 3 months is certainly a lean toward cluster headaches. Like you have said migraines usually do not have any pattern to them other then popping up with certain triggers. Cluster headaches often mimic migraines with very similar symptoms such as sensitivity to light, and severe pain.
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Customer: replied 5 years ago.
I will mention that at his next appointment.I have talked to his neurologist and have asked to be transferred to another neurologist at childrens for a second opinion.Thank you for your time and input.Hopefully I can get some answers.
Expert:  Daegan12 replied 5 years ago.
Hi [Customer Name],
I'm just following up with you to see how everything is going. Did my answer help?
Let me know,
[Expert Name]

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