Episodic ataxia and pain

General
1

Hello,

My son (20 months) isn't already diagnosed with episodic ataxia but the neurologist is researching it. (blood, urine, MRI and brainfluid... maybe thats the wrong word ...i dont know) They think of ea or extrapiramidal disorder or a metabolic disease.

Friday my son has had an attack. Most of the attacks he has to cry but when i gave him comfort he stops crying. But this time he didn't. When i put him down on his feet he cried even louder. His right foot turned to the insite... do you know what i mean? Like dystonia. And he was standing on his toes (with right foot) and down, on his toes and down. And his toes where like claws.

Its difficult to discribe because my native language isn't English....sorry

But does someone recognise this? Do you have attacks with pain? Or maybe with painful spasms ?

Greetings Kimberley

2

Spams and stiffness yes. What I would do is drills of focused movements to help that pain and strech it out daily. My pain comes from not moving much or focused movements.

I also use ARnica Gel (I get it at whole foods or you can get it on Amazon too. It's natural over the counter) it helps with mucle aches and stiffness. It's kinda like a Bengay without the smell or Biofreeze. I'd maybe rub it in on his legs etc before exercise and make a game out of moving so it's fun but theraputic at the same time. And then rub it on after too.

I have heard and know from my own exsperiance that exercising (focused movements) is just something people with ataxia have to do daily (at least I do). When I didn't do it daily I had alot of aches and stiffness. Things stoped working like my legs etc. It will not cure him but it will help him feel better and move a little better too.

I know that putting a baby on their stomachs will help them build there core strength which will help them balance, stand and walk better. I'd look for exercises that help him get stronger.

Is he crawing yet? If not I'd encurrage him to do that and work his legs when you change him like a bicycle. I used to do Pt on a child that had problems walking and did both legs together, and say hop hop hop, then run run run, then walk walk walk and we would laugh. I do this with my Grandkids too. I think it not only helps their legs etc but the brain too when they move their limbs. There are exercises that a PT can show you you can do to help. Maybe even a play group? Check these thoughtsout to see what you think. http://www.parents.com/baby/development/problems/why-isnt-my-child-...

Good luck Mom. Because you care and are looking for other information he's in good hands.

3

Hello Jeannie,

Tanks for your message. He's 20 months and he can walk.

Tomorrow i have an appointment (on the phone) with his neurologist about the attack. I will inform you.

Greetings from kimberley

4

Hi Kimberley,

Did your son have any vaccines? The Hep B causes CNS inflammation. I would be happy to send you my compiled research which won my case with Aetna. It sounds like your son is in alot of pain.

5

Kimberley,

As a mom, I can only imagine what you are going through. It sounds like you are still looking for a diagnosis. Is that correct? If you have a way to video the episodes that could be VERY helpful for the neurologist.

As moms we have to be the advocate for our children. I would do a lot of research on his symptoms and document what he is experiencing every day. i.e. what are his symptoms? how long does a symptom last? Is there anything that seems to help him? Write it down every day for a month.

Many of us here have symptoms that are better when we are careful with what we eat. Especially avoiding processed foods, gluten and "white" foods. I would start by eliminating anything that is not a "whole" food. If you shop the perimeter of the grocery store where the refrigerated items are and whole fresh fruits, vegetables. I would keep the grains to brown rice only. Then after a month of this you can introduce one new food over the course of a week and see how he does. The next week you can try him on another new food. This is a common practice with young children to find out if they are having reactions to food. Dairy is also a common problem for children (and adults). So much of our health is dependent on what we are eating. No junk food.

Here are some simple rules to follow:

"--- Don't eat anything your great grandmother wouldn't recognize as food."
--- "Don't eat anything with more than five ingredients, or ingredients you can't pronounce."
---- "Don't eat anything that WON'T eventually rot...There are exceptions --- honey --- but as a rule, things like Twinkies that never go bad aren't food. They are food-like-substances"

If you are ok with it, I'd like to pray for your son (and you) to get some real answers and solutions so he is better.

Please keep us up to date with your your son is doing.

6

Hi KImberley,

I'm now sure if you are on facebook at all.... but if you are there is a page entitled

Episodic ataxia support group..... all members either have EA or have a family member/friend with it so all know what you are experiencing....

Blessings

Dawn

7

Yes, it's a good idea to see the Neurologist again, especially to make sure it's part of the same disorder, not a different condition. Obviously you'll need to wait and see what the test results show, as it sounds like your Neurologist is doing a thorough job to find the cause.

In the meantime, in the link below, scroll down to the "Episodic Ataxias" (7th from bottom). "Episodic Ataxia with Paroxysmal Choreoathetosis and Spasticity" (also known as Dystonia 9, or DYT9) is one of the "extrapyramidal disorders" you mentioned, and sounds similar to what you describe. Maybe the Neurologist will yet find this.

www.ataxia.org/resources/publications.aspx

EA2 can sometimes also cause attacks which have Dystonia, see:

www.ncbi.nlm.nih.gov/books/NBK1501/

If either are confirmed, they can respond to the usual medications for EA (acetazolamide, and anti-convulsants to relieve muscle spasms Many of the metabolic disorders can respond to a special diet and supplements.).

I get Dystonia, including in the legs and feet as you describe, toes scrunching up, and feet can turn in at times. It comes and goes. For what it's worth, leg and foot dystonia isn't usually painful (unlike cramps), though spasticity can be painful. With Dystonia, the most pain I get is actually spasms in the neck and the headaches that come with it.

Dystonia can respond to "sensory trick, where -the spasm can sometimes be relieved if the affected area is touched or rubbed. So, the next time it happens, look to see if there's any spasms in his neck/back of head, back, hip or foot/leg, and try gently rubbing them, or the muscles just above or below the ones which are rigid. It might relieve the spasm and possibly any pain which might come with it. I find that, and laying down with a pillow supporting my neck in the right position can help relieve the pain.

Hope this helps.

Abigail

8

I sip tonic water every night for relief of cramps.

9

Hi Kimberley,
I have CA. Last August I had Hepatitis B and then jaundice followed. Now for an year I have acute muscle spasms, bone aches, and pain around my hip. I am on homeopathic medication and very slowly improving. I do not know if vaccine for the B virus can cause neurological disorders, for in my case it aggrevated my neurological issues! All the best for an accurate diagnosis.

10

Tanks for your comments!

I have spoken with the neurologist and he thinks the painful attack had something to do with spasticity. Exactly like Abigail said.

Now we have to wait. In october he will get the mri and we will get all of the results.

11

Kimberly I am an autism mom, researcher, and expert. Did you give your child any vaccines? I also have a Dad with sporadic ataxia from many years of flu vaccines.

I can help you. Mercury is still in the vaccines despite what you hear. Aluminum is also in the vaccines. The Vaccine Injury Claims Court is settling millions of dollars in claims with families whose children are vaccine injured.

Email me if you would like more information. ■■■■■■■■■■■■■■■■■■

Mary Cavanaugh

12

Last update:

1 october he wil get the MRI. and 18 october we will get the results of all of the research...

13

Hmmmm.....I am very interested in hearing more about this, if you wouldn't mind sharing with me.

max4metals said:

Hi Kimberley,

Did your son have any vaccines? The Hep B causes CNS inflammation. I would be happy to send you my compiled research which won my case with Aetna. It sounds like your son is in alot of pain.