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.
Una in Oz
Mum to Dylan (18) and Nathan (15) NF1