I'm looking for some guidance from all of you. My 2 yr old son has Episodic Ataxia. We had a DNA test preformed to narrow down what might be causing it. The results will take 4-5 months. Over the last couple weeks he's been rubbing his left eye on and off. When he does he says "booboo" or "hurt". Also randomly, he'll come up and say "head booboo" or "head hurt" as well as he hits himself on the head as if something does hurt. In addition he will say his nose hurts. The nose is a bit harder to know if it's truly associated with anything as most times he says it hurts as soon as he starts to cry over something. Though I find it odd that it would hurt him after 2 seconds of crying or that it would stuff up that quickly.
His last episodes were around Thanksgiving. And I want to say he was hitting his head prior to them coming on back then. But he has yet to have any since this new discovery of the "booboo's"
I put a call into his neurologist earlier today and I was expecting the nurse to call me back. Once it was past office hours, I figured they will just call tomorrow. Well, the doctor called and I missed it! Now that has me even more nervous. My son had a CAT scan down a year ago and an MRI down about 8 months ago both of those came back normal.
Can any you relate to any head, eye or nose pain? Or might understand what he is trying to convey by rubbing only one eye or hitting his head?
Thank you so much!!
Laura,please get your son to a Hospital,They're probably a warning sign!
Best wishes, both of you. Ozzy
Migraine is common for cacna1a mutations of ea. There also a big facebook group for specific ea.
I would take these symptoms seriously. A child of that age doesn't "make things up".
I would return the neuro's call first thing in the morning. Whenever mine rings me (and that's not often) he rings after surgery. It's very hard with little ones. I would be inclined to agree with Laura, and take him to emergency.
As an adult i have these symptoms and i can definatly say i understand why he hits his head . I feel so sorry for the little boy , for myself the pain ranges from a mild niggley pain simliar to toothache to wanting to curl up & die or shove a red hot poker in my eye . I have been admitted to hospital on 1 occasion to be give intervinus pain relief , but my neuro dismisses the headaches i keep persisting with the thought that i think its linked to my ataxia as thats how it started for me with one hell of a migraine which i never used to suffer with at all . As for the little boy i hope you can sort him out and get relief for him & yes i get the nose pain too its only on my right side but the pain can run from my nose up through my eye which then swells through to my ear into my jaw & the back of my head , i find i have to take double the pain killers and stay in a dark room with no stimuli to be able to cope & calm it down enough to function. I’m sorry i can’t give you any more help than this if indeed it is any , but like everyone else said call your neuro & get him to hospital when he has an episode. All the best
i agree with laura, please take ur boy to a hospital and get him examined,
Thank you all for your response.
By saying he needs to go to an emergency room, is that due to these are warning signs of an attack coming on? Or are these warning signs of something else?
When he says he has his booboo, within 30secs he’s back laughing and running around again.
Thank you all for your response, it was truly wonderful to wake up to. It’s so awful, my husband is a paramedic and I’m a nurse and we are just completely helpless with this. It really hurts.
I've been in healthcare most of my life.
1) kids don't usually make it up if something hurts
2) I would take him to the ER. I wouldn't wait for neuro. You don't know if this is related to the ataxia that he has. Let the ER doctors determine that.
3) He may not be having symptoms but there may be something going on the background you can't see.
Just talked to neuro, we’re going to the pedi as it might be a blocked sinus due to his molars coming in. Thank you all, I will keep you updated!!
Hi Laurie, Hope all is ok with the little one.
I was wondering the same. How is your little boy? Hope it was just a cold…
Hi Laurie: I have a rare migraine called familial hemiplegic migraine that acts like a stroke and not many doctors know how to deal with it. Also, episodic ataxia is a rare condition that you can get with it which my 29 year old daughter has had since birth and she complains of headaches. She also had the migraines really bad when she was a child. They can get better when you get older or get worse. But the ataxia stays the same or gets worse. You also get auras with this migraine which your child might be having when he rubs his eye on and off. The auras are ziz zagging lines and he might be seeing those when he rubs his eyes. The head pain is very painful and you also get numbness on either side of the body in the arms and legs and can't talk. Since he is just learning to talk you probably can't tell if he's having trouble with speech. If his MRI's and CAT scans are normal that is a good sign because when we had MRI's and CAT scans they can never find anything wrong. Try to find a good neurologist who deals with familial hemiplegic migraines and see a Genetisist who can test him to see if he has the gene that causes those migraines and ataxia. At least if he has migraines they can give him something for the pain but the ataxia is something he has to learn to deal with. I've tried different things for my daughter but the only thing that really helps is if she exercises and eats right. Teach him at a young age to exercise to keep his legs and arms strong so he gets used to it.
Good luck and God bless you and your family.
Hi All, Thank you so much for all the comments! We just saw the pedi and he believes he has an upper respiratory infection which maybe causing these discomforts are the moments. We’re going to keep our fingers crossed and pray that’s all it is.
Thank you all from the bottom of my heart!
Thank you so much for your input. Our neuro is especially taking a look at the genes that cause migraines for the DNA test. We still have 4 months to wait for those results. Its so hard as you know because he can’t really talk yet. Hopefully the next 4 months will go by rather quick and we’ll finally have some answers.