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.
Hi. Chris,
Thank you very much for saying my English is wonderful. But you know, I did have a composition in my High School that my teacher marked "poor English". I hate her very much about this. HAHA.
My tooth is great but need to have an extra surgery. The dentist need to cut my gums at two sides and he need to clear all the plague. It would be terrible and he need to stitch up. I cannot talk for a few days.
But comparing with my son last time in the hospital, he had 32 injections holes on his little arms and legs....in 14 days. It's nothing.
How is Quiz? Is she ok now? I am worrying about her.
It would be great to meet you all here. Are you all from US?
Take care.
Thank you very much for saying my English is wonderful. But you know, I did have a composition in my High School that my teacher marked "poor English". I hate her very much about this. HAHA.
My tooth is great but need to have an extra surgery. The dentist need to cut my gums at two sides and he need to clear all the plague. It would be terrible and he need to stitch up. I cannot talk for a few days.
But comparing with my son last time in the hospital, he had 32 injections holes on his little arms and legs....in 14 days. It's nothing.
How is Quiz? Is she ok now? I am worrying about her.
It would be great to meet you all here. Are you all from US?
Take care.
Hi, Vera!
I bet Kenneth is tired! My boys started school, too, and now that we are back to our busy old routine, I notice how exhausted I get! I can't imagine being a young boy trying to keep up with his buddies! Maybe he can concentrate on just being a little boy for a while. I know he doesn't feel up to it all the time, but perhaps being in school is just what he needs to distract him a bit. I hope it doesn't stress him too much.
I hope your tooth feels better. Hang in there! (Your English is wonderful! I hope I don't confuse you with the way I "talk!") Take care!
Chris*
I bet Kenneth is tired! My boys started school, too, and now that we are back to our busy old routine, I notice how exhausted I get! I can't imagine being a young boy trying to keep up with his buddies! Maybe he can concentrate on just being a little boy for a while. I know he doesn't feel up to it all the time, but perhaps being in school is just what he needs to distract him a bit. I hope it doesn't stress him too much.
I hope your tooth feels better. Hang in there! (Your English is wonderful! I hope I don't confuse you with the way I "talk!") Take care!
Chris*
Thanks for caring. Since I have the toothache in last Sat and I need to take 4 more treatments on this. And Kenneth start his school, half day session and he is really busy with his homework. You know, he is rather slower than the others. So it is really time and energy consuming.
Thanks all, Kenneth is doing great except his tiredness. He is really happy to have the exercise and playing outside. However, the tiredness makes him sad that he cannot play as the other kids.
Thanks all again.
Thanks all, Kenneth is doing great except his tiredness. He is really happy to have the exercise and playing outside. However, the tiredness makes him sad that he cannot play as the other kids.
Thanks all again.
I am so glad to hear you are getting some kind of solid response from the Pediatric MS Center. I really think that is going to be so helpful! And it sounds like the professor cares about Kenneth, too.
I know this is agonizing for you. Do you feel a bit better now? Does it seem like things are looking brighter? I hope so. I am excited to know you have heard from the MS Center.
How is Kenneth feeling? How are you? Are you feeling encouraged at all?
Take care of yourselves, and know we are all thinking of you and praying that your little guy is well and taken care of very soon.
Love,
Chris*
I know this is agonizing for you. Do you feel a bit better now? Does it seem like things are looking brighter? I hope so. I am excited to know you have heard from the MS Center.
How is Kenneth feeling? How are you? Are you feeling encouraged at all?
Take care of yourselves, and know we are all thinking of you and praying that your little guy is well and taken care of very soon.
Love,
Chris*
Dear Sllowe,
Thank you for your reminder. And I will ask the doctor about the details of the cyst. Thanks.
Thank you for your reminder. And I will ask the doctor about the details of the cyst. Thanks.
Hi Vera,
That is wonderful that you are getting some feedback from her. Keep us in toucch with how you and Kenneth are doing. The more people you can get input from the better your chances of getting some more answers.
Very best wishes
Sally
That is wonderful that you are getting some feedback from her. Keep us in toucch with how you and Kenneth are doing. The more people you can get input from the better your chances of getting some more answers.
Very best wishes
Sally
I just receive a mail from the following:
Maria Milazzo MS, CPNP
Pediatric MS Center
Department of Neurology
Stony Brook, New York 11794-8121
It is so happy to hear that she is interested in my son's case and willing to comment. But we need to get the MRI copy to her. So I will talk with my son's doctor to get the information and send to her.
Thanks all for your hugs.
Good health to you all as well.
Maria Milazzo MS, CPNP
Pediatric MS Center
Department of Neurology
Stony Brook, New York 11794-8121
It is so happy to hear that she is interested in my son's case and willing to comment. But we need to get the MRI copy to her. So I will talk with my son's doctor to get the information and send to her.
Thanks all for your hugs.
Good health to you all as well.
Hi, Vera,
I just wanted to say hello, and send a hug your way. I'm sorry it's still so frustrating for you. I want you to know that I'm thinking of you and Kenneth. It sounds like the professor does have some good ideas. It just may take some time. Let's see what Quix says when she's feeling better. I know Kenneth and you are very important to her.
In the meantime, take care of Kenneth, and be good to yourself.
Love,
Chris*
I just wanted to say hello, and send a hug your way. I'm sorry it's still so frustrating for you. I want you to know that I'm thinking of you and Kenneth. It sounds like the professor does have some good ideas. It just may take some time. Let's see what Quix says when she's feeling better. I know Kenneth and you are very important to her.
In the meantime, take care of Kenneth, and be good to yourself.
Love,
Chris*
Hi Vera,
I'm so sorry you and your son have to wait on another collapse to get the help Kenneth truly needs. Did they comment on the cyst? Will they continue to check, or measure it? I'm sure this is all very overwhelming and it's hard to keep all the questions and answers together during Dr. visits, so I apologize if my questions come at a bad time.
I'm praying for your son and for you and your family,
SL
I'm so sorry you and your son have to wait on another collapse to get the help Kenneth truly needs. Did they comment on the cyst? Will they continue to check, or measure it? I'm sure this is all very overwhelming and it's hard to keep all the questions and answers together during Dr. visits, so I apologize if my questions come at a bad time.
I'm praying for your son and for you and your family,
SL
I have been wondering how Kenneth was doing. I'm sorry you still don't know anything. All we can do is keep praying for him and let God take care of it. I am also praying for you to have the strength that you need to get through this. You are a wonderful mother Vera, and Kenneth is very lucky to have you.
I'll keep praying,
Carol
I'll keep praying,
Carol
The professor says he might be MS or ADEM, and there is a new diagnose multi-dem, ADEM is now not only happen once, but repeatedly. And there is no medication nor treatment to him. Only wait for his next collapse and see what the case. If it is infected by virus, then attack virus. If unknown, use "steroi". We can do nothing to prevent. We can only wait to see. Or his case may be changed to MS or something else. Noone know.
In fact, there is no answer also. It is so complicated that I do not know whether it is happy or not. And Kenneth is just like a bomb. I hope that he will be getting healthy and life long.
But I will not give up to keep on checking anything we can do for him.
Love to you all.
In fact, there is no answer also. It is so complicated that I do not know whether it is happy or not. And Kenneth is just like a bomb. I hope that he will be getting healthy and life long.
But I will not give up to keep on checking anything we can do for him.
Love to you all.
Your son Kenneth is being prayed for by my family.
We know that God can work miracles...He led you to this forum and to this new doctor. Have faith and feel the power of prayer.
((HUGS))) and GOD Bless,
Frann
We know that God can work miracles...He led you to this forum and to this new doctor. Have faith and feel the power of prayer.
((HUGS))) and GOD Bless,
Frann
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
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?
I pray you get the specialist you need for your son, and I hope it's very soon. I believe many on the forum would agree, it's not greedy, nor selfish, to pray for these things for yourself and for loved ones, and be sure to add the words, "quickly!"
Be well, I'm glad you are a part of the forum,
SL
Be well, I'm glad you are a part of the forum,
SL
Fatigue is a very common symptom in people with MS, I have not read about the pediatric side of the disease and I think I remember treading that they really do not totally understand why the fatigue is so extreme. I have not been diagnosed yet but my symptoms seam to match or mimic MS. The fatigue I feel is unlike any exhaustion I have ever felt, it is tiring just to lay down some days! I would have Kenneth learn how to listen to his body, when he feels tired he should rest, when he feels strength again he can get up and do a bit more. When he overdoes it you may notice that he needs a longer recovery time than he ever has before, this is common and part of the disease. I have 2 children myself and I cannot imagine the anguish you may be going through! I will pray for strength for you, your husband and Kenneth. Try to read all that you can about the disease and stay positive, I know it is hard but it will help him stay strong too.
Take care and I will be praying,
Kristin
Take care and I will be praying,
Kristin
I have send to the MS society and the link provide by nicest Quix. And hope that they will come back to me. And I would like to ask whether feeling tired easily is also a symptom of MS? In the first minute, he is active., Suddenly another minute, he tells me he is tired. The tiredness sudden pop up in a minute? I ask the doctor that they say he will be easy to be tired only.
Many prayers for your son and your family. I pray that your doctors will be able to get in touch with some of the docs that Quix has provided and that they are able to get answers and a diagnosis for your Kenneth.
As a parent, my heart goes out to you. It is so difficult to see a child that is ill.
Please keep us updated on how your son is doing.
Take care, Pat
As a parent, my heart goes out to you. It is so difficult to see a child that is ill.
Please keep us updated on how your son is doing.
Take care, Pat
My heart goes out to you. We love our children so much that we would give anything to make them well. I will pray for Kenneth and also add him to my church prayer list.
You also need to take care of yourself so you will be strong for him. This is a little boy who needs his mommy to be sharp and on top of things. I will pray for you to have the strength you need.
Keep us updated,
Carol
You also need to take care of yourself so you will be strong for him. This is a little boy who needs his mommy to be sharp and on top of things. I will pray for you to have the strength you need.
Keep us updated,
Carol
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