Undiagnosed ataxia for my son

General
1

Good day group. Thanks so much for adding me!

My son is 8 years old with a complicated medical history. He had a stroke in utero, cause officially unknown, although I had a bad car accident when I was 6 months pregnant. His stroke was on the right side of his brain, mainly in the parietal lobe, but all structures on the right are smaller than the left. He began having partial complex seizures at 18 months old, which are well controlled with 2 medications, Carbamazepine and Clobazam. He has a left sided weakness, learning delays and immature social skills, but he is a happy, amazing kid.

Two and a half years ago he had his first ataxic event. He had had 2 seizures in one week (very rare) and his neurologist increased the Carbamazepine (Tegretol) after each seizure. He woke up 2 days after the second increase unable to walk. He crawled out of his room. When I picked him up he couldn't stand up, got very pale then vomited. He COULD talk but sure didn't want to. He couldn't really explain how he felt, but he looked like he was dizzy. The ER neuro chalked it up to a medication overdose.

The same thing happened on January 8th and February 5th of this year. There were no medication increases although he was taking a generic form of the Clobazam at that time.

It took him 5 weeks to fully recover (walking) from the Feb 5th event. The only common denominator is that he asked me for water in the middle of the night all three times and that he seemed unwell the days before the events.

He was diagnosed with bacterial pneumonia in the hospital on Monday. It hit him pretty hard. He began taking Amoxicillan and Tylenol, in addition to his seizure meds, on Monday night. On Tuesday night he was unable to walk, then vomited all over the floor. The Amox seems to make him lethargic. He is feeling much better today and is walking, although very unsteadily.

He has been tested for metabolic disorders and EA2, which have come up negative. His neurologist is calling the episodes migraines until we have more to work with. He had an MRI following the first episode 2 years ago and there were no changes in comparison to the MRI he had as a toddler. He is supposed to be getting another MRI in the next few months but the neuro isn't pushing too hard for it because there was no change after the first event and she says his symptoms don't fit something structural.

Does this situation sound familiar to anyone? We have no family history of ataxia, but a long line-up of migraine sufferers and some relatives with epilepsy.

If you gotten this far, thank you so much for reading!

Take care,

Heather, mom to Luka.

2

God Bless you Heather!

What a difficult time for you! Of course you are doing all the right things and will no doubt have quite a journey in front of you.

The first things that come to mind for me is gluten.

Since you haven't mentioned gluten, I thought I'd at least suggest he might be having a problem with it. Many folks here do. I never had the classic tummy symptoms with gluten, but was diagnosed with Gluten Ataxia in Jan 2009. It's certainly worth a look. The simplest thing to do is remove all gluten for a few weeks and see if it helps him. Clobazam is not gluten free. www.glutenfreedrugs.com

Please keep us up to date with his progress!

3

Hi Heather,

I wanted you to know that I did read your story. God Bless you and your family. Take good care of yourself so that you continue to take good care of Luka.

4

Certainly did read to the end and just wanted add my blessings to you and Luka.

So sad that drugs are necessary .. it sounds like they are the cause of recent symptoms.

Hugs from Patsy xx

5

Hi Heather,

Obviously I wasn't a child at the time but this might be of some help.

After shock following an incident in the car I suffered a seizure in my sleep. Prior to this I'd been having what I now know were de ja vous attacks. In my case this was almost always soon after I got up in the morning. I'd suddenly feel dizzy and nauseous and have to lie down for a few minutes until the sensation subsided. This was treated with Carbamazaphine, and also Sodium Valproate. Neither one of these medications ever stopped the de ja vu, regardless of the dose.

Years later I've been diagnosed with Spinocerebellar Ataxia.

I hope you get some constructive help soon.

best regards

Beryl

6

Try a gluten intolerance blood test and then try putting him on the caveman diet. Eliminate all corn from his diet. It may not be the meds he is reacting to but the corn syrup the liquid meds are in. Generic drugs are usually suspended in corn syrup because it is readily available an cheap.



The caveman diet is one in which he eats only what would have been available to the caveman. Unprocessed meat with no fillers or preservatives. Pork but no ham, lunch meat, hotdogs. Beef, such as roasts, steaks, ground beef with no fillers or preservatives, ets. Roast fresh turkey but none of the ones shot up with warer, broth,etc. it is easier if you just buy your meats freshly cot by the butcher.



Milk, but not in cartons. The cartons are coated inside with a waxy looking corn product to make them watertight. This is true for frozen foods as well. Frozen foods are brushed with cornstarch so they don’t stick together. If you can make your own bread or buy it from a bakery it is preferred. That store bought bread does not stay soft all by itself. It is shot up with preservatives. Catchup is one of the worst offenders.



Milk in plastic or glass. Stay away from soft drinks. Milk, almond milk, eggs, old fashioned oatmeal toast from the bakery or homemade bread. Tell the school about his diet. They have to comply. Fresh hamburgers, roast turkey, the real deal, not lunch meat, fresh fruits and vegetables. Homemade mashed or fried potatoes. Freshly made meatloaf, stuffed peppers, not the frozen kind. I have been doing this for years, even after my son grew up and had a family of his own. It is a great diet for ataxia. It often eliminates those migraines that are debilitating, no light, no sound, flat on my back, no pillows, for two hours.



If you try it, you will need to learn how to read ingredient labels. Make sure you only buy cane sugar. It will say it right on the bag, everything else has corn sugar in it. Your doctor will not know whic meds are corn free, ask the pharmacist. Hospital IVs have corn syrup in them. If hr has to have an I’VE, tell them he can only have, Ringers Lactate. You will have to become aggressive as a lot of doctors and emergency room personnel will give you a hard time, be persistent if you do this. Tell my how it works if you do it. Initially it is a lot of work, but once you learn what you can and cannot give him, it is a breeze. In the beginning, I gave my child a two ounce filet mignon for dinner. The bribe worked.

7

Hi Heather,

U r a very good writer so it was easy to read. U r a blessing to Luca. Great name too, I know a Luca and he is a fantastic boy.

What I picked up from your story is the thirst, especially in the night. My ataxia was chemical induced from minocycline. My dr would not diagnose ataxia until I found the cause. Then they had to pull their heads out of the sand and dx officially. Your sons symptoms sound very similar to mine. Feeling bad before, then the attack and then the long recovery. It is possible that the chemicals are building up in his system and causing this. I would research ataxia and the drugs that he is using. Just put in the name of the drugsn( all) and ataxia and see what you can come up with. If nothing comes up try combining the names and ataxia. See if they can find another drug to control seizures. If it is chemical induced, there is a chance of complete recovery. I fluctuate between an 80 to 95 percent recovery. Certainly better than falling on the ground.

Keep us posted.

8

Dear Heather,

the ataxia could come from side effects of carbamazepine. This is not explicetely written in the link i send you whereby, but i have been told by a neurologist that his patients complain about such a side effect, and dizziness.

Side Effects of Carbamezepine:

http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682237.html#side-...

Side Effects of Clobazam are inter alia Ataxia and somnolence

http://en.wikipedia.org/wiki/Clobazam

Amoxicillan Side Effects:

http://antibiotics.emedtv.com/amoxicillin/amoxicillan-side-effects....

http://antibiotics.emedtv.com/amoxicillin/amoxicillin-side-effects....

Side effect which if happens, has do be reported (even if you child has already got seizures: Seizures)

Tylenol - i do not know the drug but it is to read in the web that it can be bought over the counter. If not your doctor prescribed it, please try to ask him/her or a pharmacist for the interactions.

And, finally, you could consider that in your family could be an hereditary ataxia. In ataxia telangiectasia it can be that somebody reacts to any medicament with the (almost) incapability to walk. Ataxia telangiectasia is not inheridated dominantly but recessively, and so it could be that there would not be any other family member with this desease. Family headache is often connected with another hereditary disease, the Hereditary Hemorragic Teleangiectasia. Has there been watched any nosebleeds in the familiy? This could be a sign for that. Ataxia telangiectasia is often connected with hemorragic properties; could be the Hereditary Hemorragic Ataxia. You can adress your neuro with this idea. There are a lot of studies on the www.pubmed.org database for it. I have read a lot of them because of a related condition.

Children/people with Ataxia Telangiectasia often develop a sensitivity to medications which causes such effects as described by you:unability to walk. I have had this in the last year for four times. The effect used to diminuish after some time. Maybe your child could cope better with another medication and not react to it in this way? Ask your neurologist if there is a possibility to change it.

Kind regards, hope this helps you further

Akita

9

Bless you and your son Luca. Although I don't have Gluten Ataxia, many people on this site do. His symptoms and recovery time may be caused by gluten. I hope you get to the bottom of his troubles soon! My best to you..., ;o)

10

Hi Heather,

I have Atypical Migraines that have similar symptoms to strokes and seizures. I get daily headaches that turn into Migraines if I don't stop them quickly. I take Fiorcet but young children can't take it until they are 12. I do believe that Migraines can cause symptoms of Ataxia. Hemiplegic Migraines have similar symptoms. I wish you the best in getting treatment for your son to stop these attacks. I had been suspected of having seizures 8 yrs. ago and was put on Depakote (antieliptic) for a few months. It did stop the symptoms but made me very sedated. Another doctor (an Opthalmologist) said what I was having was Migraines not Seizures so I stopped the Depakote.

Best Wishes,

Nancy J

11

I had very strong ataxia symptoms for a year or two before I had an incident that sounds very much like your son’s. Unfortunately after that seizure like episode I have been unable to walk unassisted, whereas before I could walk but was falling all the time and could barely drive, but was still getting around semi-okay.

They did tons of tests and my Doctor eventually diagnosed me with “encephilitac cerebellar ataxia”. I had been ill with a bug that wouldn’t go away for a couple of months before the episode. The virus that I tested as having extremely high anti-bodies was HHV-6, and it has been known to cause seizures and encephilitas on occasion. It’s a childhood disease that most people had as a toddler - so most people will test positive-- but can reactivate if your immune system is weakened. I was on anti-viral therapy for about six months, with lots of side effects, but it didn’t particularly help. But I also have other autoimmune issues so that could be why. And I really am not confident that was even the correct diagnosis – I think the encephilitas made my ataxia much worse, but it was already there.

So sorry you and your child have to go through all this.

12

Thank you all so much for your input and prayers! Your knowledge and advice is very much appreciated. I can't believe so much time has gone by since I've logged in. Fortunately, Luka hasn't had another ataxic event since I last posted. Actually, he did have the flu last year and was unable to walk for a day. We took him to the ER because we weren't sure what was going on (history of stroke and seizures in addition to the ataxia) and found out that his Tegretol levels were very high, likely due to dehydration. His neurologist doesn't agree, but I think all of his ataxic episodes are related to medication toxicity. Tegretol is toxic to the cerebellum if blood levels are too high, which causes ataxia.

Luka also had another MRI about 10 months ago which showed no change. Recently, he was also put on a generic of Clobazam for a couple months and became more unsteady. Now that he's back on Frisium (non-generic), he's steadier and his speech has improved. A pharmacist friend told me that, although generic medications have the same amount of medication in them as their name-brand counterparts, blood levels can be +/- 20% compared to the brand name.

Thank you again for all your words of wisdom!