frontal lobe glioma, headaches, stomach pain

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frontal lobe glioma, headaches, stomach pain

Postby JavisMom » Sun Nov 14, 2010 4:05 pm

My seven year old was diagnosed with NF1 when he was about one year old. He has been doing great. He receives speech, occupational and physical therapy. He is doing wonderfully in school and socially. That's why it was a huge shock when we found out that he has a small frontal lobe glioma through an MRI. He had complained about headaches however according to the neurosurgeon the headaches could not have been caused by the tumor. The tumor is still very small and the plan at this point is to just watch it. He will have a follow-up MRI in January.

His headaches are almost completely gone but for several weeks he has been complaining about an upset stomach in the morning. He used to eat a big breakfast before school and now hardly eats anything in the morning. We have had some success with ranitidine. His doctor thinks his upset stomach could be caused by stress. I find that hard to believe. My son does know he has a tumor but not how serious this could get. At least that's what I think. I asked him and he denied being too concerned. He is not acting any differently either unless his stomach hurts which is almost exclusively in the morning.

I did some research on pediatric brain tumors and in general the recommendation is to take them out but they seem to be more hesitant in kids with NF because of likelihood of the tumor growing back. However, I like to prepare myself for what might be coming. We live in the Seattle area. I read that Boston is the #1 in pediatric neurosurgery. Does anyone have any kind of experience with frontal lobe glioma?

I would like to have a full body MRI since I am wondering if there are any other tumors we don't know anything about. He had one baseline MRI at 15 months. I had suggested to get him an MRI once a year but was told they only do MRIs if there is a direct reason for it. I am confused and feel guilty for not insisting on a yearly MRI. This is soooo scary!
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Re: frontal lobe glioma, headaches, stomach pain

Postby CoconutsGrandma » Sun Nov 14, 2010 7:23 pm

Hi!

We live in Federal Way, and our daughter is seen at Seattle Children's hospital for symptoms caused by NF 1. Is this where your son is receiving his medical treatment? our daughter has been a patient at Children's for seventeen years now ( she is nineteen). I understand your concerns about your son's headaches and stomach problems. Are you taking him to the NF clinic at Children's? To be honest with you, I have not found much help with the geneticist's at Children's. If our daughter is experiencing symptoms, we go directly to her pediatrician for advice and referral to a specialist. Our insurance does not require a referral, so I often skip the pediatrician and go directly to the specialist. I realize that as parents, the first thing we think of with a child who has NF is that it is the NF causing the problem. Most likely it is not the NF, BUT sometimes it is. I would follow your gut, and if you see changes in your son's behavior, or if he complains of pain that interferes with his daily routine, I would seek medical advice. Even if the MRI is only for your peace of mind to know if there are any other tumors, it's worth it if just for that. I have definitely had to PUSH to get some testing done for our daughter, but my gut is usually right. NF IS progressive, and you are right to be cautiously concerned. Feel free to private message me anytime.

Take good care,
Becky
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Re: frontal lobe glioma, headaches, stomach pain

Postby Nathan » Tue Nov 16, 2010 7:20 am

Hi JavisMom,

I am so sorry that you are going through this time with your precious son.

With regard to headaches, a brain tumour / glioma doesn't always cause headaches. Nathan has had headaches for many years and although we will never know for sure it is likely that many of his were initially caused by hypertension (high blood pressure). Since he started medications for this, his headaches certainly improved. When Nathan had growth in a tectal plate glioma last year his main symptom was nausea and weight loss - not headaches. Later he developed headaches from hydrocephalus.

There can be many reasons for an upset stomach. In fact even the term upset stomach has different meanings for different folks. In our house it means the urgent need to go to the bathroom. For other people it can mean nausea, vomiting, or pain in the tummy. Given that your doctor has been prescribing ranitidine I get the sense that it is a pain that is higher up. Did you know that ranitidine can cause abdominal discomfort in some people?! Helicobacter pylori has been found to play a role in upper GI pain. (Google it). There is a relatively simple test for this. If it is found in your son then likely the whole family would need to be treated. I would also suggest giving careful consideration to your sons diet - maybe keep a food diary for a week and then have a look at whether there could be anything he is eating that has changed his toilet habits or if the problem is a pain higher up, is he having a lot of acidic foods that could be causing this? Some kids wake up quite hungry and will feel this as a pain. Perhaps try giving him a small breakfast of something soothing and milk or yoghurt based which will assist the excessive gastric acid secretions that can occur in the morning. After half an hour see if the upset has resolved - this is a fairly simple 'test' you can do at home! Also some kids (especially those with NF) get 'stomach migraines'. There were a lot of posts about this a few years back. I am afraid that I don't know much about them and I do know that some in the medical field would say this is ballyhoo! But we are here to support each other and if it was something that was important to someone else it may be significant. I also see that your son is having physical therapy. Has he taken up a new exercise regime or sport that could be cuasing him to wake up with a sore tummy from stretching? Is the pain relieved after a visit to the bathroom?

I would not rush to have frontal lobe surgery. Even though it is challenging I cannot strongly enough encourage you to heed the medical recommendation to take the watch and wait route. Nathan has an optic glioma which was diagnosed at age 5, although in retrospective reviews of earlier CT Scans it was evident at about 18 months. This glioma was quite large, but as there was no effect on his vision the decision was made to watch and wait. At age 8 Nathan went into early puberty. Again the decision was to only treat the early puberty because his 3 monthly scans did not reveal significant or rapid growth in this glioma. It was thought his early puberty did result from the glioma as it was a large glioma. In recent scans his optic glioma has reduced significantly in size!!!!

Last year Nathan started to become unwell and was found to have a tectal glioma. Initially he had two surgeries to relieve hydrocephalus as the tumour was blocking a ventricle, but again a watch and wait approach was taken for his tectal glioma. Many paediatric brain tumours in children with NF are grade 1 pilocytic astrocytoma's and they remain dormant for very long periods of time. Unfortunately for Nathan his tumour began to grow and cause problems. We were advised to have surgery which of course we did. I would not wish this surgery on anyone. The risks were extremely high that he would lose movement down one side of his body and also half his vision. The neurosurgeon still cannot explain how it is that Nathan did not experience these issues. In the frontal lobe the effects would be different, but there would still be large risks. This area of the brain affects personality and inhibitions. Operating on the brain can also lead to epilepsy (Nathan is already epileptic, but we have not noticed a change in that). It is so tempting to think - operate and get it out, but it is not as simple as it sounds. (I am not suggesting that you think it is that simple!). Nathan has another glioma and it has done nothing since it was first detected when he was 5. I don't think the hestitation is just about NF tumours growing back, but more that they do not behave like tumours in people who don't have NF.

I understand your desire to have a full body MRI - I too have felt like that from time to time, but in all honesty it probably would achieve very little. Nathan has three monthly MRI's of his head. One month he didn't have a tectal glioma, three months later he did! You could scan this week and next week something could appear. There is not really a full body MRI procedure, it would be a series of MRI's of various body parts. While MRI is thought to be relatively safe, there are no longtitudinal studies to confirm this. I too would feel frustrated about not having gone ahead and pushed for annual MRI's. Please don't be so hard on yourself. You are guided by your sons medical team and there is a lot of controversy about how frequently to scan. Many places recommend annual head/spine MRI's in kids with NF1 due to the increased incidence of optic glioma. Canada and the UK don't scan at all unless there is a symptom that prompts it. In a way the outcome would have been the same. Now that you know that your son has a small frontal lobe glioma he will be followed up regularly, and finding out any earlier would not have made anything change - he is not requiring treatment and may have had this for a while.

I am sorry that you are going through this challenging time.

Best wishes,
Una in Oz
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Re: frontal lobe glioma, headaches, stomach pain

Postby RensMom » Thu Nov 18, 2010 3:06 pm

My 4 year old dd was just diagnosed with an optic glioma and a brain stem glioma. It is scary, isn't it? It's hard to imagine anything much scarier than hearing that your child has brain tumors. I too was a little surprised by the wait and see approach, but everything that I'm reading verifies that this is standard practice. As Una said, I think the reason is less about the likelihood that the tumors would grow back and more about the probability that they will never cause problems. I was told that these are very slow-growing tumors. They can stay stable for many, many years and they can even shrink. They just don't behave the way tumors typically behave when NF is not a factor, which is definitely a good thing. My understanding is that in most instances, the types of tumors that my daughter has, never cause problems. Her tumors are inoperable, though. The standard treatment is chemo. So although I'm told it's generally well tolerated and effective, I have to agree that unless her tumors start causing major problems, it's best not to treat them. It'd be nice to avoid chemo if at all possible.

Also, I don't want you to feel guilty about not insisting on a yearly MRI. I was told that it used to be common practice for people with NF to get yearly full body MRIs. They quit doing it because often times they found tumors, but these tumors never caused problems or required treatment. The only thing they did was cause anxiety and stress because they were now aware of them. I don't know if that provides you with any comfort. That knowledge had a mixed effect on me. I certainly understand the rationality behind it and I'm very glad to know that most tumors don't cause problems, however it's disturbing to know that it's likely my little one has or will have more of these. In the end, I have to agree that it's probably best just to have MRIs when symptoms are present.

(((hugs))) I know this is all very scary and stressful. I hope you find answers for what's causing the stomach issues or better yet, that they just go away altogether!

- Ro
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Re: frontal lobe glioma, headaches, stomach pain

Postby JavisMom » Sun Nov 21, 2010 2:13 am

Thank you so much for your encouraging words. I had to give myself a break and tried not read anything about brain tumors for a few days. It is so nice to know there are people out there who listen and understand. My friends are trying to help but sometimes - especially when we had just found out - made everything worse. I wished I had not told anyone. Once I did I lost control quickly about who knew. I don't want my son to be treated differently. Additionally, I am not as patient as I used to be. Other people's problems seem so minor in comparison. However, our lives have returned to our busy schedules and it's remarkable how normal lives all of a sudden seem. I sometimes have to remind myself that this is not just a bad dream.

Can anyone recommend a book or article on brain tumors when NF1 is the cause? All my books don't give a lot of information about NF but brain tumors in general.
I was very touched by your stories and hope all our children are or will be doing well. Thank you again and I am sending lots of hugs your way too.
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Re: frontal lobe glioma, headaches, stomach pain

Postby Vandaar » Mon Nov 22, 2010 6:56 am

Have you tried planning breakfast with him and any other kids in the family before bedtime? May during this planning time you can get them to drink water. Unlees you want to brush teeth again. Do you have the samething for breakfast everyday?

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Re: frontal lobe glioma, headaches, stomach pain

Postby JavisMom » Wed Dec 01, 2010 3:12 am

His stomach is so much better. Thank you for all your ideas. He is off Ranitidine and takes Lansoprazole once a day before breakfast. The plan is to stick with this for one month. I try to give him more time in the morning. Mornings can be so hectic but I make sure that he has plenty of time to take his medication and play for a little while.

I am still not sure what caused it. He had a prolonged cold and cough. His doctor thinks that our anxiety could have caused him stress even though I tried to keep my worries out of my voice when I explained to him what was happening. Additionally, he was very concerned about missing science while he was with his physical therapist at school. Now the teacher just gives us his work and we can finish it at home. He is still worried about it and had an upset stomach again on Monday. He is trying very hard at school and is doing really well but gets very concerned it if he gets behind in something.

Yoghurt early morning is a great idea. Thank you. On weekends in the late morning he can eat anything even a slice of bacon. Early mornings before school he is not very hungry. He used to eat a huge breakfast but now I am glad when he just eats a little yoghurt. He has a snack at school before lunch so I know he has a chance to eat something if he gets hungry.

All in all we are doing a lot better. We are still very nervous about the next MRI but hopeful that we can go with the watch and wait approach. They only found the glioma by accident since it did not cause his headaches. He rarely complains about headaches anymore.

I finally agree with all of you. MRIs cause a lot of anxiety. Now that we know he has a glioma we will always have MRIs and worry. If it does not cause any problems in the future it might have been better not to know about it.
By the way, I did order the "Buddy book". I am not sure who recommended it. It is a book that explains NF to kids. It is simple and very cute.
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