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Old 12-11-2008, 10:30 AM   #1 (permalink)
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Default Can a child have ALS?

Okay, I hope I don't ramble, but I need some help. I have an adopted 8 year old boy who has, in the past two years, been seen by many physicians for muscle weakness, toe walking, and slurred speech. These conditions have gotten so much worse in the past year. He has seen numerous neurogists for these issues, and specialists for his issue of weight loss. He has had some shaking on both of his hands, especially his fingers. His MRI's and all bloodwork have been normal (except for some elevation in his CK? levels).
He has been to Johns Hopkins to see pediatirc neurologist Dr. Crawford this past October where I was told that he had upper and lower motor neuron damage. His tongue has many fascilations. In the past couple of weeks, you can see severe twiches in his face and terrible twitches to his back. I was told that he had a very rare motor neuron disease that they didn't have enough information about to give it a named diagnosis.
His "probable" diagnosis's (all have been ruled out by testing) were; Fredrieghts Ataxia and spinal muscular atrophy. After a muscle and nerve biopsy, I was told that he had a mitochondrial myopathy.
He has had a GI tube place last month because he has not gained any weight in about two years. He falls constantly, but I think everyone is most concerned about his twiches and muscle wasting.
I am going back to see his pediatric neurogist on the 18th of this month. I have not been told that my son possibly has ALS by this physician, but as I previously mentioned, we were told at Johns Hopkins that he has a very rare motor neuron disease. I have also been told by his pediatric gastrointestinal specialist that he suspects ALS. I want to have as much information as possible when I go to his neurologist appointment next week. I have done a lot a research, and it all points to him having a form of child ALS. Also, can anyone explain why my son is having sure noticeable twitches all over his face and back (there are twitches everywhere on his body, but these are the most prodominant)? PLEASE help. I am not in the medical field at all, but I would like to be informed when I go to his appointment. I think sometimes pediatric physicians only look into PEDIATRIC diseases.

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Old 12-11-2008, 11:24 AM   #2 (permalink)
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Default jodeeszakacs...

I responded to your question over on the other forum (the "Do I Have ALS" one)... I also sent a couple of messages to members that should be able to give you some sort of pertinent input. ... So, make sure that you check for responses to your thread both here, as well as wherever else you've posted it. (hugs!)
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Old 12-11-2008, 11:56 AM   #3 (permalink)
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I have no answers for you, I do not have ALS just symptoms but I do have 4 adopted children, all drug babies, So the one thing you said that made me scratch my head a little was that your son has been toe walking. I see this a lot with my past foster children and now my adopted one. My 5 year old boy had a mild stroke at birth and has CP because of it, his muscle's are very tight and hyper, it takes a lot of muscles to toe walk,he looks like a miny body builder because of the muscles this builds, and I think with muscle weekness due to ALS this would almost be impossibe. I don't know that for sure but from what I see all my toe walkers had great muscles and tone.
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Old 12-11-2008, 12:24 PM   #4 (permalink)
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My son only toe walked when he was first adopted three years ago. Now he can barely walk and definitely can not stand alone on his left leg. At least there is a shread of hope in what you said. Thanks!
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Old 12-11-2008, 01:29 PM   #5 (permalink)
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Research has found that while rare, children can have this terrible disease. Reasearch has also shown that there are so many other neurological problems that can be suffered from that it is, most likely, that one of the others is what is going on with him.
Let's hope so.
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Old 12-11-2008, 05:31 PM   #6 (permalink)
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jodeeszakacs, I feel sorry for you child's condition. The point of exact name for his disease may be moot, because what is called ALS may actually be different diseases; what is important is that all of them are characterized by prograssive damage to both Upper and Lower Motor Neurons in absense of other explanations.
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Old 12-13-2008, 01:33 PM   #7 (permalink)
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Hi
I'm really sorry to hear about your son and I think only a specialist can really answer your question and I know that you know that. I'll tell you what I know, but I'm not a doctor and I'm not trying to suggest that any of the following applies to your son at all. I do think though that your obviously carefully worded and such caring/ loving post deserves a reply so here goes...

My guess is you know all this because you are clearly so well informed.

I believe that there are rare cases of young people getting ALS and that amongst hereditary forms of MND/ ALS is included a group of childhood disorders known as the spinal muscular atrophies.

A gene called ALS2 has been discovered to cause a rare inherited form of ALS that onsets in infancy. Parents usually notice that something is wrong when their child does not learn to walk, or sometimes a child that has previously been able to walk unaided starts to stumble and trip.

ALS2 mutations have also been detected in other conditions related to MND, infantile onset ascending hereditary spastic paraplegia (IAHSP), and juvenile onset primary lateral sclerosis (JPLS).

I think the previous comment about drug use is also interesting though I'd hope social workers would have told you about any drug use/ dependency.

I really hope that this is not ALS.

Please use this site as much you need there is such a wealth of info here and warmth and kindness.

I do hope you and your boy get all the help you need. How is the little guy doing with all of this?

Have you looked for a support group for parents with children with ALS?

I wish I could say something more helpful.

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Old 12-14-2008, 02:56 PM   #8 (permalink)
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Thank you so much for your support. My son isn't doing very well, and he is VERY angry. He is one of five children, and he sees he is losing out on many things (food, outdoor playtime, school, etc.). He wasn't a product of drug abuse that we know of, but we weren't given lots on information. Yes, I do think we would have been told. I would love to find a support group for parents of children with ALS/MND, but I am afraid the disease is so rare that I am alone in this. I have God and my family, and I use strength from them. It is nice, however, to hear from people on this website. I know everyone hear has been touch by some aweful experiences in similar ways, and it feels comforting to know there are others that share my sadness. I guess I didn't mean that I want others to have to go threw terrible ordeals, but when we have to...teams are better! Thanks again.
Jodee
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Old 12-14-2008, 06:03 PM   #9 (permalink)
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Hello Jodee

First I want to tell you how sorry I am for you and your son and your family, although it sounds like you are a very loving mother and that it is most assuredly giving comfort to your son.

Given the description of your son's symptoms (toe walking, slurred speech, muscle weakness, muscle atrophy), Friederich's Ataxia sounds like a plausible diagnosis. It is an inherited disease that damages the nervous system and typically is seen in children around your son's age. It's incidence is about the same as ALS: about 2 in 100,000 people. Many people with this disorder can live into their 60's if other systems aren't adversely affected (e.g. the cardiovascular system). Unfortunately there is no cure and treatment revolves around dealing with the symptoms.

You also mentioned mitochondrial disease as a diagnosis: is he thought to have both or do they think he has that instead of the ataxia?

Lean on us when you feel the need and know that you are not alone on this forum. The people on here are amazing and are always willing to listen. Please take care.
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Old 12-14-2008, 08:02 PM   #10 (permalink)
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Thanks for your response. My son's first probable diagnosis was Fredreichs Ataxia. That was one of his first genetic tests. This came back negative. He has had more than 10 diagnostic tests. The only tests that show significant abnormality were his nerve conduction and the other test (I can't remember the name) that showed nerve and muscle damage. He does have a mitochondrial defect that showed up on his muscle and nerve biopsy. Also, his CK levels were slightly high.
His frozen samples were sent out for further evaluation. I got a phone message from our pediatric neurologist last week stating that he had some results but wanted to speak to me in person. We are seeing him this Thursday. He also stated that he wanted to consult YET MORE physicians. I am happy we are in good hands, but I am very frustrated with this lengthy process. It has been over two years. I noticed today that his back looks like there are firecrackers underneath his skin. His face (around his eyes) also looks like these little firecrackers are going off all the time.
Thanks for reading my notes, going on and on again. It helps me to write about him! I know something will show up eventually.
By the way...my son's name is Joey.
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Old 12-15-2008, 11:49 AM   #11 (permalink)
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Hi
I like the name Joe and Joey if I'd had another boy he'd probably have been Joe. I doubt I'll suggest anything you haven't thought of you are clearly a super and dynamic mother, but here's what comes to mind;

1. Is there anything he could do on the internet (with supervision) where he could be more of an equal to other kids.

2. Would there be other support groups for disabled kids or support grps for disabled kids and their siblings that might help (we have some of these in the UK)

3. Are there any base ball teams or football teams near you that do any voluntary work or charity work that Joey could be part of.

Know all of these depend on you searching you really need someone to advocate for you. I hope someone on this site nearer to you has more US knowledge.

Keep in touch.
Thinking of you.
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Old 12-17-2008, 08:22 PM   #12 (permalink)
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I'm surprised wright hasn't responded about this yet, but I notice you mentioned that Joey's nerve conduction test was abnormal. In ALS the nerve conduction is usually normal. Bring this up with your neuro tomorrow.

Hoping for the best,
-Tom
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Old 12-18-2008, 04:56 AM   #13 (permalink)
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Hi Tom
Wright's response is 3 responses up from yours.
All the Best Donna
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Old 12-18-2008, 12:52 PM   #14 (permalink)
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Hi Dee,

Sure I saw that one. I meant specifically about his responding to the issue of nerve conduction being normal vs. abnormal in ALS.

I rather him answer any medical/symptom/diagnostic issue but it had been a couple days since Jodee had revealed the nerve conduction result and no wright response, so I was just pinch-hitting.

-Tom
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Old 12-18-2008, 03:05 PM   #15 (permalink)
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We just came back from our neuro appointment. It looks like Joey has something that is too rare for our pediatric neurologist to diagnosis. The probable diagnosis Johns Hopkins is a rare motor neuron disorder, but he is only 8! The neuro is sending us to Cleveland. With doctor opinions from there as well as our visit to Johns Hopkins, I am hoping we can finally get a diagnosis. I am going to write some information down that came our a doctor summary from last September. I hope someone can give me some information if I list the "medical" terms listed. If ANYONE has any thoughts PLEASE let me know. I realize this forum is mostly for adult illnesses, but I have nowhere else to turn. Sorry that it is so lengthy, but I believe someone will catch something in the report.
"Joey is an 8-year old boy with a greater than 2-year history of progressive decline in motor strength and dysphagia. Extensive etiologic investigation has been underway over the last year. Nerve conduction velocity studies were essentially normal. (I THOUGHT THEY WERE NOT NORMAL AS I PREVIOUSLY STATED. I GUESS I MISUNDERSTOOD SOMETHING SOMEWHERE ALONG THE LINE-Mom) EMG shows evidence of axonal loss involving the sensory and motor axons consistent with a sensory motor axonal polyneuropathy. In addition, denervation potentials were also seen. (I THINK THIS IS WHERE I ASSUMED HIS NERVE STUDY WAS ABNORMAL-Mom) He underwent muscle and sural nerve biopsies by Dr. Albanese (I HOPE I CAN WRITE DOCTOR"S NAMES-Mom), on August 8, 2008. Two processes were identified in the nerve and muscle sample. First there was evidence of axonal loss within the peripheral nerve with resultant denervation-related changes in the muscle. The second finding in the muscle was of abnormal mitochondrial accumulations. A sample of the muscle biopsy has been submitted for mitochondrial analysis. (SINCE THIS REPORT WE RECEIVED THE RESULTS ON 12/18/08 WITH NO ABNORMAL MITOCHONDRIAL ISSUES-Mom)
MRI of the brain in May 2008 was interpreted as normal. Additionla metabolic studies including galactosylceramide, aryl sulfatase, and hexosaminidase A and total were all normal. He had a negative DNA result for Friedreich's Ataxia and SMA. CK was slightly elevated at 319. In the past year he has had normal CBC, CMP, T4, and TSH.
Physical examination-Head circumference is 51cm, weight 18.5 kg, height 115.5cm, pulse 80 per minute in regular sinus rhythm on auscultation. Funduscopic exam did not reveal any retinal abnormalities. Optic disk margins were sharp and of normal configuration. Pupillary reactions are within normal limits. He has full facial motion, strength, and symmetry (FACIAL MOTION HAS DECLINED SINCE REPORT 12/18/0-Mom. He had obvious tongue fasciculations. On manual muscle testing, deltoid, biceps, and triceps strength was fairly good at 5 to 5-bilaterally. Grip strength was mildly reduced. His fingers are tapered, his hands are small with atrophy of the intrinsic hand muscles noted. There is decreased muscle bulk of the thenar eminence. DTRs were absent in both upper extremities. In the lower extremities, psoas5- bilaterally, quad strength 5 on the left 5-on the right, ankle dorsifexion was limited actively. I was able to passively dorsiflex each ankle 10 degrees short of neutral. Peroneal strength was 3-bilaterally. His feet are held in a pronated posture at rest. DTRs were quiet but present at each patella today. Achilles reflexes were absent. He has strong withdrawal plantar reflexes. (I DONT KNOW IF IT IS RELATED, BUT I HAVE BEEN TOLD HE HAS "BABINSKI"? AT A VISIT BEFORE THIS ONE. THAT IS WHEN THEY SUSPECTED SMA?)-Mom
On functional exam he walks on bilateral toes. He can jog a short distance again up on both toes. To move from a surpine to a standing position, he performs a sit up, turn to the side, and up to vertical. He can hop several times in a row. (THIS IS NOT THE CASE PRESENTLY)-Mom

(ALL OF THE OTHER INFORMATION IS REPEATED IN MY FIRST POST ie. GI tube placement for weight loss, excessive choking and aspiration of foods...) I am also restating that his fasciculations are much worse now than since his last report. The neuro saw those today and commented that they were noticeably worse. I also mentioned the clearing of the throat, and I was told that it may be related to a swallowing issue. The report above is not from today's visit but from September. I have given the new information as much as I was told, but no reports have been printed yet. I know this is a lot to read, but I am desperate. I have hopes that Cleveland will give us more information, but this site seems to have people with more information than our neuro has given us.

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