Please give me advice

[vera from Hong Kong]

There is no dignose of my son and I need help. It is a rare case or even the first time disease appeared.The doctor says nothing can be done at the moment, But we do think that there are still experienced one who can offering help to us. PLEASE!

Here is Kenneth’s disease brief history:
On 27 August 2006, he was found weak in left leg and was not able to walk normally after waked up in the morning. We sent him to the Prince of Wales hospital immediately. And the next morning, he lost his control of his left limbs. And later, he   could not control his tongue as well. He was diagnosed of stroke at the first time. He was sent to Intensive Care Unit when he was found difficulties in breathing and was given heparin for the treatment. One week later, he started restoring his functions gradually. Then he learnt how to stand, walk and talk. He nearly totally recovered after few weeks. Unfortunately, on 28 September, he suddenly felt weak and cannot move his tongue in the morning again. The next day, he could not move his right limbs this time. It was the same side which he suffered when he was one and half year old in 2000. He had the herpes encephalitis.

He was sent for MRI again and also did the CSF. Multiple lesions were found in the white matter of the brain and oligoclonal band was found positive from CSF test. He was given steroids and heparin this time for the treatment.  He was suspected to be ADEM or Multiple Sclerosis later in October 2006.

Third MRI was done in November 2006 that his lesions were slightly increased and a small cyst was found in his brain. Kenneth started recovering after one week of second relapse. He resumed most of his function and able to walk for a short distance gradually.

Unfortunately, Kenneth has double vision occasionally in this month. MRI was done in 21 August 2007 in the hospital. Lesion was found in his brainstems, but the radiology doctors have different opinions on this. In addition, according to the following up MRIs, as well as the distribution and the persisted lesions, it was found not favored to typical ADEM or MS. Tests on some rare disease and metabolic disease was also carried out for Kenneth. The results were all negative.

[Quixotic1]

Here is the other Pediatric MS Center in the US.  I think there only two.

http://www.pediatricmscenter.org/index.php?component/option,com_contact/task,view/contact_id,1/Itemid,27/

The contact information and the phone numbers are on the bottom of the page.

Best wishes, Quix

[Quixotic1]

There is a National Pediatric MS Center in New York (in the United States)  Here is a link to their website:

http://www.pediatricmscenter.org/index.php?component/option,com_frontpage/Itemid,1/

Here is a link to the page that has all of their contact information:

http://www.pediatricmscenter.org/index.php?component/option,com_contact/task,view/contact_id,1/Itemid,27/

I hope these specialist doctors can help.  I will continue to look for more doctors in this field.  Quix

[vera from Hong Kong]

Dear All,

Thank you indeed for your reply. This would be a match in the dark. Since my doctor also asking me and my husband to find any one who can give the professional reply to them.

If you know any doctor who is familiar with the sitauation, would you please give the doctor's mail or address or telephone, so that I can ask my doctor to call. And my doctor will send him the MRI film and the hospital medical history to him. (the doctor cannot give them to me since the policy of Hong Kong Hospital). Thanks.

Anyway, I start to read and study the link and the articles. I am sure this will give me some hints to me.

So many big hugs to him already. And I also quit my job to take care of him.

[Momzilla]

I wish you the best of luck during this difficult time.  Give Kenneth a great big hug from all of us.  A lot of us are parents and Quix has cared for thousands of children.  Our hearts go out to you.

Keep us posted on how Kenneth is doing.

Take care!

Chris*

[Quixotic1]

I am so sorry to hear of your son's problems.  We here are not MS professionals, but, just patients and other interested people.  I am a former pediatrician with MS, and I do know that MS occurs in young children.  Your son's disease sounds very much like MS, but the doctors there feel the MRI findings do not match well.  Perhaps they were comparing the MRI findings to those observed in adults with MS.  I don't know.

I came across this reference on the National MS Society site which refers to a recent article in the neurology literature stating that the MRI's of children with MS may not appear the same as they do in adults.  I do not know if this is new information, but I suspect it is.  MS is not common in children so young (Kenneth is about 8?).  I hope this helps.  The information I found says:

"MS may appear differently on magnetic resonance imaging (MRI) scans in children. One paper includes a comparison of MRI findings in adults and children with MS, and discusses advanced imaging technologies that can distinguish types of brain tissue damage, which may help to better identify children with MS and predict the course of their disease"

Here is the link to that statement:

http://www.nationalmssociety.org/site/PageServer?pagename=HOM_RES_research_2007Apr20

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There are several articles listed by the International Pediatric MS Study Group, published in the Journal "Neurology" volume 68

ARTICLES:
Folker Hanefeld
Pediatric multiple sclerosis: A short history of a long story
Neurology 2007 68: S3-S6. [Abstract] [Full Text] [PDF]  

Lauren B. Krupp, Brenda Banwell, Silvia Tenembaum for the International Pediatric MS Study Group
Consensus definitions proposed for pediatric multiple sclerosis and related disorders
Neurology 2007 68: S7-S12. [Abstract] [Full Text] [Figures Only] [PDF]  

Jin S. Hahn, Daniela Pohl, Mary Rensel, Sanjai Rao for the International Pediatric MS Study Group
Differential diagnosis and evaluation in pediatric multiple sclerosis
Neurology 2007 68: S13-S22. [Abstract] [Full Text] [PDF]  

Silvia Tenembaum, Tanuja Chitnis, Jayne Ness, Jin S. Hahn for the International Pediatric MS Study Group
Acute disseminated encephalomyelitis
Neurology 2007 68: S23-S36. [Abstract] [Full Text] [Figures Only] [PDF]  

J. M. Ness, D. Chabas, A. D. Sadovnick, D. Pohl, B. Banwell, B. Weinstock-Guttman for the International Pediatric MS Study Group
Clinical features of children and adolescents with multiple sclerosis
Neurology 2007 68: S37-S45. [Abstract] [Full Text] [PDF]  

B. Banwell, M. Shroff, J. M. Ness, D. Jeffery, S. Schwid, B. Weinstock-Guttman for the International Pediatric MS Study Group
MRI features of pediatric multiple sclerosis
Neurology 2007 68: S46-S53. [Abstract] [Full Text] [Figures Only] [PDF]  

D. Pohl, E. Waubant, B. Banwell, D. Chabas, T. Chitnis, B. Weinstock-Guttman, S. Tenembaum for the International Pediatric MS Study Group
Treatment of pediatric multiple sclerosis and variants
Neurology 2007 68: S54-S65. [Abstract] [Full Text] [PDF]  

W. S. MacAllister, J. R. Boyd, N. J. Holland, M. C. Milazzo, L. B. Krupp for the International Pediatric MS Study Group
The psychosocial consequences of pediatric multiple sclerosis
Neurology 2007 68: S66-S69. [Abstract] [Full Text] [PDF]  

Anita L. Belman, Tanuja Chitnis, Christel Renoux, Emmanuelle Waubant for the International Pediatric MS Study Group
Challenges in the classification of pediatric multiple sclerosis and future directions
Neurology 2007 68: S70-S74. [Abstract] [Full Text] [PDF]  

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Here is the site that listed these articles:

http://www.neurology.org/content/vol68/16_suppl_2/

I hope that this information can provide you and your son's doctors with some help.  Quix