I feel like I have no where to turn so I was given this website by a dear friend who suffers from migraines.
My 9 year old daughter started having headaches in August. She had them for 2 weeks. I took her to the Dr. and he told us that kids get headaches and not to worry.
The headaches went away just as fast as they came within days.
About 2 months later they came back. For 2 weeks and then completely stopped.
In December they came back again after not having headaches for almost 2 months. They lasted 2 weeks and then went away.
In January she started having them again. I waited the normal 2 weeks and they did not go away. I took her to the Dr. Who again told me that it just must be the way my daughter gets sick, she gets headaches.:(
They give her motrin and a week later. She is still getting them everyday. I take her back in, they tryb to tell me again it is nothing. I tell them all her symptoms and plead with them to help us. They finally agree to a cat scan.
We have to wait on the results. Meanwhile I keep taking her back in every week sometimes 4 times a week.
We finally get the results of the CT scan back and they reveal a lipoma in her posterior horn of her right lateral ventricle and ethmoid sinus disease.
They schedule us to see a Neurologist but it is 2 months away. They then tell us she needs to see the Neurosurgeon in 3 weeks instead on March 28th. They did not give us any more info than she has a mass in her head and the measurement and location.
Not one Dr of the at least 5 she has been to has thought her symptoms were important.
Her headaches normally started dead center of her forehead then spread to her whole head. She gets blurry vision and sometimes nausea, sometimes not.
That went on for 6 weeks, until the last week. Her headaches now start on the right (right side is where lipoma is) or left side (just today so far), they start small like a little hammer hitting her until it gets bigger and bigger and it feels like her head is going to throw up out of her ear. Sometimes her right hear. Today it was her left. On friday it felt like her whole head was going to throw up, Not her just her head. She also said it feels like a twisting or a hurricane or tornado in her head.
Here is the thing though. I have kept a headache diary and she only gets these at school. Example, we just had a 3 day weekend. No headaches at all. At school 2 hours and a headaches comes:(
Her glasses are newly prescribed so we ruled that out. She has no glare lenses to reduce eye strain. She seems to be ok most days until lunch when it is very noisy. For 5 weeks she had a headache everyday at lunch, the minute they found an isolated spot for her to eat in a quiet room, the lunchtime headaches went away.
They hold off now till the next noisy class which is music or art or recess depending on which comes 1st that day.
I keep track of when she is in a noisy place when the headaches come and it is 9 times out of 10 with the exception of today. Today she came home very early in the day at 9:45 in her quiet math class.
Just when we seem to narrow down the cause the headaches change on us. It was every time with noisy places until today. Got one in a quiet place.
We stopped giving her motrin because the Dr's would not listen to us. I was sooo worried that she had been on motrin for 49 days. I told repeated Dr's my concern and was told to give it to her so she can keep on trucking at school we were told.
Her blood pressure was up at her last 2 appts. I don't know if that is from daily pain meds as I just recently learned of this being a side effect of daily pain meds. In the beginning I was more concerned with liver damage and rebound headaches that was why I kept bringing it up to the Dr's that I was concerned that she lived on motrin daily at school.
I also stopped the medicine because I needed to find out if the headaches would go away on their own and they do. If she is given nothing but a drink and quiet, the headaches goes away within an hour.
But if I keep her in school in the noise and give her motrin, an hour later I am still picking her up because the headaches doesn't go away, or starts to and then comes roaring back.
I am so scared. I have researched any and everything I could find on right lateral ventricle tumors and their affects, hers does not seem to be big enough (pea size 0.4 cm as of Feb 9 but not sure if it has grown more in the past weeks) to be causing Intracaranial pressure (ICP) but that is just from what I have read because the Dr's have given us no information. I have read varying things while googling and I am no Dr but I am just trying to help my daughter and the Dr's will not give us anything to go on it seems.
I thought at one point they were tension headaches but now I don't know if it is the lipoma, or migraines or what:(
The lipoma is 0.4 cm I'm not sure what difference the size makes or much else because we were given no information. This is a military hospital. If the lipoma is 0.4 in a 0.3 space then I know that would cause a huge pressure I am sure but the thing is she only gets the headaches at school. The one time she has gotten it at home was when her 3 cousins spent the night and I think the noise level just crept up for her?
Any advice would so much be appreciated because we feel so lost like no one believes us.
My daughter is an excellent A occasional B student and has thankfully not had any effects on her grades because we are able to work with her after the headaches go away at home. But this is the start of week 9 and we just don't know what to do:( Thanks for listening.
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