Home › Forums › Infant Reflux Support › Boo-Hoo! I need YOU! › MRI Results…..I cant believe this!
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April 24, 2006 at 4:14 pm #6713
Anonymous
InactiveNoah had his appt on Friday for an MRI to basically rule out any brain abnormality that might be causing his eating aversion/lack of appetite. I was positive there wouldnt be a problem because he has been improving somewhat on his eating. I was so confident that I almost cancelled his appointment.
I got a call today from the Ped and I still cant believe what he told me. He said that the MRI results came back that Noah has symetrical moderate enlarged ventricles. In other words, there is an over-accumulation of fluid in his brain. Thankfully there is no pressure on his brain at this time. I did some research on this topic and found very little info until I realized that enlarged ventricals is another term for hyrodcephalus. We are scheduled to see a neurosurgeon this friday.
I have done nothing but cry all day. I just dont understand how this can be. Typically babies are born with this condition and its obvious they have it, therefore they have surgery at birth to prevent death or lesson other brain damage. Noah has absolutely no signs of having any problems. How can he have this now? It doesnt make any sense to me. From what I’ve researched, if a child isnt born with hydrocephalus, they can develope it from an infection such as menningitis, encephalitis, ruebella etc, or from head trauma. He hasnt had any of these things. I am physically sick with worry and I feel so helpless.
If I may ask all of you out there who believe in prayer, to please pray for my precious Noah.
lisaann 2006-4-24 16:15:25 April 24, 2006 at 4:21 pm #6714InactiveOh, Lisa, I am so sorry. Know that Noah and your family are in our prayers.
Just one question, did the Ped call you or the neurologist? I would call and speak with the neurology dept personally to ask your questions.
Not sure if it will help, but we had a pulmonologist interpret our PH probe results, and the GI disagreed completely. Not to say this is the same situation at all, but maybe the dr whose specialty this is would give you other information or be able to answer your questions better?
I am thinking of you all……….
April 24, 2006 at 4:25 pm #6715InactiveLisa, I am so sorry, and I will certainly pray for Noah. Please let us know how the appointment goes on Friday with the Neurosurgeon.
It’s a good thing you didn’t cancel that appoinment.
Just know that I will be praying for Noah and I’m sure many others will, too.
April 24, 2006 at 4:36 pm #6716InactiveDon’t know if this will help but it had some other resources for info as well….
http://www.ninds.nih.gov/disorders/hydrocephalus/detail_hydr ocephalus.htm#53753125
April 24, 2006 at 5:04 pm #6717InactiveOh my gosh, Lisa! I’m so sorry. Thank goodness you kept the appointment. I can’t believe it. Of course, I will pray for Noah. Please keep us posted about the appointment on Friday. I’m so glad that your new GI has been so diligent that he decided to schedule this test.
Thinking of you guys.
April 24, 2006 at 5:06 pm #6719InactiveOh my Lisa. I’m so sorry to hear this but also so glad you kept the
appointment. Definitely keep us posted and I hope everything works out.
Will be thinking of you.April 24, 2006 at 5:11 pm #6721InactiveLisa
I am so sorry to hear about this. Please do not let the internet scare you though. Please see if you can speak to someone about this and who is well versed on the issue. I am just hoping it is temporary and it is easily cured. I don;t know if it is the same thing but do you remember that a long time ago i posted about pressure on the brain? Matthew had a sonogram through the fontanel because it was really open and the time and they were checking for pressure in the brain. I don’t know if they were looking for fluids or anything BUT at the time the ped said that if they found something it would correct itself…. some babies develop pressure in the brain and that causes reflux and lack of eating… i am praying it is nothing. PLease keep us updated…
April 24, 2006 at 5:33 pm #6726InactiveI am so sorry Lisa. I will definetly keep you in my prayers!!!
April 24, 2006 at 9:03 pm #6748hellbennt
Keymaster
A BIG HUG TO YOU, NOAH & YOUR FAMILY!!
April 24, 2006 at 10:12 pm #6754InactiveI will be thinking of you and Noah on Friday, please keep us posted.
April 25, 2006 at 9:04 am #6761InactiveI am so sorry! I will be praying for you and Noah!
April 25, 2006 at 8:48 pm #6838InactiveLisa – I am so sorry to hear this – will keep you and Noah in my prayers. I know how hard this is, but try to keep off the internet and keep the panic down until Friday – sometimes these routine “rule-out” tests turn up things that never would have been noticed otherwise. It could be a benign anomaly that will resolve on it’s own – we had a situation like that with kidney enlargement in my oldest – and if not, you’ve found it and can deal with it before there are any problems. Keep us posted!
April 25, 2006 at 9:25 pm #6839InactiveThank you everyone. I am doing my best to keep my sanity. I cant even look at Noah without getting teary eyed. I am still in such disbelief of the diagnosis. The “not knowing” all of the facts is what is really killing me. We are scheduled for his 1 yr check up tomorrow and I will atleast be able to ask his Ped a few questions. I dont know how knowledgable he will be however. I will just have to wait a few more days to talk to the neurosurgeon and hopefully he can give me some positive news. Although from what I have researched, this condition is a “wait and see” a lot of times. Sometimes the child has no issues, and other times they develop hydrocephalus and need to have a brain shunt to prevent brain damage.
Thank you all again for your prayers and support. I will keep you posted on our appointments.
April 26, 2006 at 5:26 pm #6913InactiveJust got back from the Ped for Noah’s 1 yr check up. We spent nearly 1/2 an hour discussing his brain abnormality. Unfortunatley, since he isnt the neuro. he cant give me much info. He did tell me that Noah looks great and seems to be developing wonderfully (minus the eating of course). He said to try not to worry until we get in to talk to the Neurosurgeon on Friday. Although he did admit that he would be concerened too if he were in the same boat as us.
Everything else seemed to be right on track. Noah’s weight is right at the 10th %, height at 25% and his head at 46%. He was most concerened with his head measurement being normal, and it seemed to be. We opted to postpone all vaccines that would normally be given at this visit. To my surprise, our Ped actually agreed given the current diagnosis of his brain scan. We all agreed to discuss the vaxes at a later date when given the OK by the neurologist. After that, he sent us on our way and told us to call and update him after our appt with the Neuro on Friday.
April 26, 2006 at 6:48 pm #6918InactiveLisa – sounds like you are doing a great job with Noah!! Glad the appointment went well. It seems like height/weight relationship is healthy, and that is important!! (my ped told me that the first sign of malnutrition is lack of growth in height and then lack of growth of the head, and Noah seems well proportioned!!). I know it is still hard to feed him but you really are doing a wonderful job.
I am praying that the neuro appointment will go well. If Noah looks great, then hopefully there have been no repercussions from his condition. As i said before, i know it is hard not to worry, but what you read about certain things on internet may be so far off from what he has. The tests really need to be interpreted and i am really hoping it is nothing but a temporary condition.
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