15 m/o with ataxia

Hello there, I was wondering if anyone would be able to give me some insight as this is new to me.

On Jan. 10th 2014, my son then 12months woke in the morning at normal time but when I lifted him from the crib and stood him on the floor, he fell over. I proceeded to try and sit him and he fell again. We took him to the Children's Hospital where they said he had Ataxia probably of the cerebellum. His CT scan was clear. We were released and by time he went to bed that night he was walking, standing and sitting again. This bout lasted for about 12hrs. At that time, the Dr's said no further tests were needed unless it happened again. He was not sick at the time. He had a double ear infection at the end of November, other than that just teething.

This past Friday, April 18th, again he woke and was unable to sit/stand/walk. He's now 15 months old. We took him to a different Children's Hospital. This time they ran blood work which was normal and sampled his urine which was normal. Again, the Dr's said it was Ataxia most likely in the cerebellum. This bout also lasted for 12hrs. He had an ear infection a week prior but it was a small one and it was clear when the checked him at the hospital.

We are scheduled for an MRI on Wednesday. But no doctor has given us insight as to what keeps causing these bouts.

If anyone can relate or has some idea that would be great. Thank you!!

I hope our other parents will respond to this discussion. I would also like to invite you to our new Parents' group:

http://www.livingwithataxia.org/group/parents-of-children-with-ataxia

Hi
This happened to me at 18mo I became floppy and stopped walking etc my mother was labeled a neurotic mother. I was under Birmingham children's hospital from then to 16yo and still had no clear diagnosis just Cellabelum Ataxia. Only now at 43 doctors think my ataxia was caused by a virus such as German measles. My ataxia is slight I have difficulty with fine movement and some unsteadiness also i have a soft voice

My cousin also had a 'floppy' episode when she was a baby but the Ataxia disappeared, now she is in the air force and has no effects.

I wish you good luck with your son

Sarah

Oh man. I am sorry to hear this. I know it must be scary for you, but hang in there, man. About the only thing I can tell you is to listen to your doctors get second opinions with neurologists until you get it narrowed down.

Hi,

Some children as far as I am aware can suffer ataxia just after viral infections with no lasting effects.

My daughter first had symptoms of Ataxia at 13mths following a viral infection this bout lasted for about 2 weeks. Her 2nd episode was at 22mths she has never recovered from this and has suffered from very acute episodes lasing up to 3mths and never fully recovering. She is now 7.

As dancermom has said there is good support in our Parent's group

Good luck to you and your soon.

My daughter was 3 years old, hospitalized for croup. She was spent several days in moderate care. When she was discharged, she was very unsteady on her feet (gait/balance affected). We were told this was cerebellar ataxia, caused by her illness. Within a couple weeks she was fine and this never happened again (she'll be 30 years in June). Kind of odd, as I've had cerebellar ataxia (unknown cause) for eleven years now. Unfortunately, mine has never gone away...,ha! My best to you and your son..., ;o)

My 3 year old woke up one morning at 16 months and I noticed tremors in his hands. Over the course of the next few weeks he began to lose his balance. The next 6 months he would start to do better and then get sick and regress about every month. The last year he has improved but still gets tremors some mornings and still struggles with balance but has been doing PT which is helping. The Dr.s suspected some type of virus to have caused his symptoms and diagnosed him with post viral cerribilitis. We have never had a definite diagnosis but since he is slowly improving I'm guessing it must have been viral. It was SO scary in the beginning but he has improved so much that I'm hopeful that he can recover completely. His speech is a little slow also. Prayers that things go well for your little man.

Hi Laur22,

i`ve got symptoms which seem to go in the same direction. When lying in bed for a longer period, or during the sleep,the energy of my body seems to distribute from the lower to the higher part,finally crossing the brain barrier. Then, when standing up, there is no energy any more in the legs, but my head is whirring and crackling. In this situation i've got the tendency to be dizzy and weak in my stance and gait. It is not the same on all days, most days are better days. It helps me in this situation to sit up straight, in the sitting meditation position. It would last for at least two or three sitting periods with 20-30 minutes each (and standing or wanking in-between) until some of the usual strength would appear again. In general it would be better for me to start with these exercises in the morning, because later then i am not able to manage the problems.

It would be possible that your son would have got a cerebellar ataxia, even in the case his CT would not have shown any changes. Your boy is still young and it could be that there would still not be a visible damnage in his cerebellum because of the short duration of his symptoms.I also find it noticeable that each of the bouts of your son were preceded by an infection.. Maybe infections have the potential to trigger such deteriorisations in your son. So it could be helpful to avoid these infections. I just have had a bad pharyngitis which left me weak, with a fatigue, symptoms still not disappeared..Always also my nose and my ears are affected, more or less. My head is usually covered to protect the region and to avoid a deteriorisation of my chronic infection.

Wishing you the best!

Akita

Hi Laur22, I'm really sorry to hear about your son. My daughter was a similar age when she started displaying problems although it wasn't separate episodes but was all the time. The MRI scans at first didn't show anything and it was only after about 3 years and comparing the scan pictures that the doctors could see the shrinkage in her cerebellum. Unfortunately years later we still don't know which type of SCA she has as all the tests have not been developed to diagnose them all.

I hope that you get the answers you need to be able to help him.

Best wishes

April

Might want to check for seizure disorder. Many different types of seizures n different symptoms. EEG will sometimes show seizure activity sometimes not. We didn’t know when my son was little that he was having seizures at night while sleeping. Affected his speech n other things also.

Hi Laur22,

the symptoms of your son, the bouts, could come from an infection involving the central nervous system, which could be dangerous, when this comes again and again (as a sort of relapse of the disease). Your area is known to be endemic for tick-borne-diseases, which can affect also the central nervous system.There has been found a new Lyme-like illness in your surroundings, and it could be perhaps helpful to call the emergency number for suspected cases and to verify, that your son would not be in danger to have got this infection. The phone number is indicated on the buttom of the page. http://www.nhregister.com/general-news/20130116/yale-researchers-di...

In general, your son could have an ataxia, just as the doctors said; - this in an episodic form; might be not so urgent to find out which ataxia this is, but if it would be a CACNA1A mutation, there would be perhaps exist a medicament for symptom treatment in the case of future bouts.. Hopefully they will tell you on Wednesday where to go next.

(For explanation: I am so informed because i have got a tickborne disease, which comes again and again; as well as the abovementioned mutation in my family. Usually the symptoms are starting later in life, but there have been found small children, too, with some episodic symptoms. If possible you should contact a specialized doctor for this problem, because there are so many possible variants to consider...)

Hopefully the cause for these bouts can be identified soon.

Kind regards,

Akita

Thank you all so much for your responses!!! We are truly overwhelmed! We have taken into consideration about the infections but both ear infection were bacterial and he showed no prior signs of a viral infection. Wednesday can't get here soon enough!! Thank you all so much again!!

Thank you PG for this answer. After we read this, we began thinking about our nights and it dawned on us that since he turned one he has had what we were considering "night terrors" and really paid them no mind. Upon what you said and doing some research, it seems sometimes parents may think their child is having "night terrors" but really they are nighttime seizures. We will be addressing this with Neurologist. Thank you for sharing!!!

PG said:

Might want to check for seizure disorder. Many different types of seizures n different symptoms. EEG will sometimes show seizure activity sometimes not. We didn't know when my son was little that he was having seizures at night while sleeping. Affected his speech n other things also.

Akita, Thank you so much for thinking about a possible tick related aspect. We do live along the coast and last summer and fall we did take him on walks through the marshes. I will definitely begin this to the neurologist attention as well! Again, thank you very much!!

Akita said:

Hi Laur22,

the symptoms of your son, the bouts, could come from an infection involving the central nervous system, which could be dangerous, when this comes again and again (as a sort of relapse of the disease). Your area is known to be endemic for tick-borne-diseases, which can affect also the central nervous system.There has been found a new Lyme-like illness in your surroundings, and it could be perhaps helpful to call the emergency number for suspected cases and to verify, that your son would not be in danger to have got this infection. The phone number is indicated on the buttom of the page. http://www.nhregister.com/general-news/20130116/yale-researchers-di...

In general, your son could have an ataxia, just as the doctors said; - this in an episodic form; might be not so urgent to find out which ataxia this is, but if it would be a CACNA1A mutation, there would be perhaps exist a medicament for symptom treatment in the case of future bouts.. Hopefully they will tell you on Wednesday where to go next.

(For explanation: I am so informed because i have got a tickborne disease, which comes again and again; as well as the abovementioned mutation in my family. Usually the symptoms are starting later in life, but there have been found small children, too, with some episodic symptoms. If possible you should contact a specialized doctor for this problem, because there are so many possible variants to consider...)

Hopefully the cause for these bouts can be identified soon.

Kind regards,

Akita