2 year old with chiari 1

hi,my 2 year old grandson has chiari 1 we found out about a year ago now,we found out after he had had several long seizures,he does have symptoms nystagmus ,balance problems,choking,nec pain arm pain and tingling in his fingers,amoung other things ,we no he has fluid flo problems,the nuro said its very significant and very tight but we never asked about how many mm,infact i think its been such a shock we forgot to ask a lot of things,the nurosurgen did say he thinks he might benefit from decompression that was last august he wanted to see us again in 6 weeks but the appointment was cancelled due to unforeseen circumstances,so we should have gone for our next appointment in feb that was cancelled now we wont get seen until july,this is the nhs in the uk,has any one else had a simlar situation ,and also we never ask wether there are things he should avoid doing can anyone give me any advice that would be great,

Hello, your grandson is lucky to have you, it is wonderful you are searching for information. Have you had a chance to check out the Chiari Info for Members tab above? It has a lot of useful information. For me, I find it really helpful to write down a list of questions and symptoms prior to any doctors appointment, this helps me to remember. I often hand my doctor a copy of the list so he can address each one and also then includes that information in my medical record for future reference. How are your grandson's symptoms right now? Are the seizures better controlled? How is his pain level? Depending on how things are currently, can you look for a different NS that is familiar with Chiari that can see him sooner? Please know I am thinking of you and sending positive thoughts your way. Please keep us updated on how he is doing.

Generally in the US they try to treat a child that young without surgery until the growth pattern of the skull is a bit more pat in order to avoid several more surgeries as they grow. I'm not sure what the NHS does. od course when things are "tight," they do the surgery immerdiatley to avoid permanent disability.

I'm so sorry for what ever came up to force cancellation of those hard to come by NS appointments for a serious situation. I hope everything is okay now. To have to decide between the risk to your grandson and the situation at hand must have been horrible.............


hi thanks for the advice,he does have balance and eye problems every day he hasnt had a seizure since may and he somtimes has pain but not every day, im just glad he can talk more now and tell us how he is feeling ,i hope your feeling well and thanks for that .........
Auburnm said:

Hello, your grandson is lucky to have you, it is wonderful you are searching for information. Have you had a chance to check out the Chiari Info for Members tab above? It has a lot of useful information. For me, I find it really helpful to write down a list of questions and symptoms prior to any doctors appointment, this helps me to remember. I often hand my doctor a copy of the list so he can address each one and also then includes that information in my medical record for future reference. How are your grandson's symptoms right now? Are the seizures better controlled? How is his pain level? Depending on how things are currently, can you look for a different NS that is familiar with Chiari that can see him sooner? Please know I am thinking of you and sending positive thoughts your way. Please keep us updated on how he is doing.

hi thanks for your reply we went to see our local doctor yesterday and he said its unacceptable that the hospital have cancelled 3 appointments and that he needs seeing to so he is trying to find out for us whats going on



TJ1 said:

Generally in the US they try to treat a child that young without surgery until the growth pattern of the skull is a bit more pat in order to avoid several more surgeries as they grow. I'm not sure what the NHS does. od course when things are "tight," they do the surgery immerdiatley to avoid permanent disability.

I'm so sorry for what ever came up to force cancellation of those hard to come by NS appointments for a serious situation. I hope everything is okay now. To have to decide between the risk to your grandson and the situation at hand must have been horrible.............

I misunderstood and thought you had been forced into cancelling - sorry. Its good your PCP is keeping on things. FWIW my granddaughters nystagmus was at its worst at 4 and got better and the seizures went away also until her first big growth spurt. She turns 16 tomorrow and things have started up again. I don't know how one ever gets of the roller coaster. I hope you do soon....................

I don't know where you are at over there. but one of the back doors to treatment and fast tracking things may be a referral to a neuro-ophthalmologist. There used to be quite a few i the NIH. They are more than qualified to sort out a lot of your grandsons symptoms.


thats ok i always misunderstand things ,you all must have been through alot ,its scarry at times how have you managed all these years,our grandson is not well toight ful of cold he has such a bad cough especially at night infact he has had this cough for nearly a year no one seems to be doing much about it,our childrens hospital is a three hour drive i would be there every day if we lived there its quite frustrating ,im just glad my daughter and grandson live with us so i can be close anyway did your granddaughter have to limmit her activities is there anything we should avoid anyway thanks for your reply hope to chat again thankyou ..........

I misunderstood and thought you had been forced into cancelling - sorry. Its good your PCP is keeping on things. FWIW my granddaughters nystagmus was at its worst at 4 and got better and the seizures went away also until her first big growth spurt. She turns 16 tomorrow and things have started up again. I don't know how one ever gets of the roller coaster. I hope you do soon....................

I don't know where you are at over there. but one of the back doors to treatment and fast tracking things may be a referral to a neuro-ophthalmologist. There used to be quite a few i the NIH. They are more than qualified to sort out a lot of your grandsons symptoms.