Aa
Please give me advice
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.
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.
I put Kenneth in our prayer chain at church. We are praying for him and the new professor so that he will know how to treat him.
I'm sending you Light,
Chris*
I'm sending you Light,
Chris*
The new professor will see him on next Mon and Tue (10 & 11 Sept). And I will wait for their opinion.
Thank you all for your passion to my son. And I receive the message from the International patient programme in Canada.
"Unfortunately, the Herbie fund is unable to assist patients who are seeking assessments or consults. In addition, there are limitations regarding the medical team providing advice without examining your son. Our medical team would be happy to review the information and advise whether an assessment/treatment at SickKids should occur but cannot give any specific advice/opinion with regards to treatment.
If you wish to proceed with a Referral, we require complete medical information on your son, along with a completed application form for our medical teams review. If our Physicians are able to render a definite assessment/ Treatment Plan based on the information submitted then our office will provide you with a cost estimate. Once all arrangements are finalized (signing of documentation, payment arrangements, etc), then the Physicians office will proceed with scheduling appropriate appointments.
Please let me know if you would like to receive an application package for your son. I will be happy to guide you in the international patient process. In addition, I am attaching a list of medical institutions you may wish to contact, as you explore all your options."
I hope that the new professor would have some sounding ideas.
Thanks all.
Thank you all for your passion to my son. And I receive the message from the International patient programme in Canada.
"Unfortunately, the Herbie fund is unable to assist patients who are seeking assessments or consults. In addition, there are limitations regarding the medical team providing advice without examining your son. Our medical team would be happy to review the information and advise whether an assessment/treatment at SickKids should occur but cannot give any specific advice/opinion with regards to treatment.
If you wish to proceed with a Referral, we require complete medical information on your son, along with a completed application form for our medical teams review. If our Physicians are able to render a definite assessment/ Treatment Plan based on the information submitted then our office will provide you with a cost estimate. Once all arrangements are finalized (signing of documentation, payment arrangements, etc), then the Physicians office will proceed with scheduling appropriate appointments.
Please let me know if you would like to receive an application package for your son. I will be happy to guide you in the international patient process. In addition, I am attaching a list of medical institutions you may wish to contact, as you explore all your options."
I hope that the new professor would have some sounding ideas.
Thanks all.
Here in the United States August 1 through August 3rd were a National Holiday. It is also the time when the most people are on vacation, sometimes for the whole week. Perhaps the doctors at the two centers have been on holiday and have not responded yet to your request. There were two pedicatric MS Centers. Have you had your doctors call both of these phone numbers?
Tomorrow I will call these numbers and ask that they respond to you. I hoping all is stable with Kenneth.
Quix
Tomorrow I will call these numbers and ask that they respond to you. I hoping all is stable with Kenneth.
Quix
When will the new professor see him?
What if we all write to them and ask them to respond? Would this help? What can we do?
I think EVERY one of us should call or write to get them moving on this. What do you say, guys?
Zilla*
I think EVERY one of us should call or write to get them moving on this. What do you say, guys?
Zilla*
We did not receive any feedback from the MS society in US. But there will be another professor in Hong Kong will study Kenneth's case. And hope that she have the positive answer to us. Thanks for all your prayers and hugs.
By the way, there is a party call
"the International Patient Office, SickKids",555 University Ave. Rm7251. Toronto, ON M5G 1X8, http://www.sickkids.ca, Did anyone know anything about this?
By the way, there is a party call
"the International Patient Office, SickKids",555 University Ave. Rm7251. Toronto, ON M5G 1X8, http://www.sickkids.ca, Did anyone know anything about this?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
