My son (21 monts old) has cp. We just returned from the UK where we are following a new therapy. It looks very promising and i talked with several parents from all over the world who told me about the amazing progress the children made. The Advance-team also treats children in Canada and later on in Belgium. We are very hopefull because one mom told me that her 3 year old daughter started to sit unsupported, something her neurologist said she would never do.

Fanny

[This message has been edited by moderator3 (edited 02-19-2002).]

dont listen to the doctors they dont know what children with CP will do cause they only know the dianosis. Doctors told my parents i wouldnt do alot, but God showed them differently. Doctors are good but then again so is God He knows everything that will happen with His "special" children

Hi. I agree with the last poster. Don't listen to doctors about what kids with CP can or can't do.

They said I wouldn't walk until I was 6 (I walked at 2). They said I would never run (wrong), ride a bike (wrong), or play sports (wrong).

They said I would have slurred speech. Not only do I speak clear and perfect English, but I also know Japanese, Spanish, and French and can speak those with near-perfect accents.

They said I wouldn't have bladder control. I do.

They said I would be retarded. Well, I am a senior at UC Berkeley, so I think that was wrong, too.

So-- don't listen to doctors. They are definitely not Gods. They also need some people skills most of the time.

Thank you Fanny Hendrikx
Reading your message and using your link to ANR just lighted a light in a long dark tunnel. Our son is seven now and we had just about accepted his condition as permanent. Clearly we haven't tried everything.
Thanks

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Gudridur

Dear Gudridur,

I would like to tell you that we are very hopefull about the treatment in England. Our son is making progress. The most important change is the way he is breathing. At first only the abdomen was moving, now, after 6 months therapy his chest has developed and he starts to use his thorax. The spastic movements are reduced and he starts to lift up his head.
Every visit we can see the other children of our group improving too. We have faith in this therapy because for the first time we can notice the differences.
So, please, don't give up and don't pay to much attention to what some doctors tell you.
Good luck!!

Fanny


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Hello Fanny, and whoever else is reading this....I am a mother of a 4 year old little girl diagnosed with Cerebral Palsy....I am only 20 years old....Ive never been so scared in my life....I cry alot... I don't know where to turn...I feel like giving up sometimes...But please know that I would NEVER really give up!!! I love this child with more than all of my heart! She's my life-and i'm hers'. I want to hear from alot of people...I want some advice on how to make this whole situation a little easier for the both of us...Or better yet, I just want to read letters from people with experiance...Im not out in the world...so therefore I dont know your stories...and I know that I am not the only one dealing with the CP situation....Please...make me feel comfortable here....I have no one to relate to with this...

Im now trying to read up on the Hyperbaric oxygen chambers...and the ANR (Advanced Neuromotor Rehabilitation)

I dont know much about these services...and I dont really know if I would be involved with them in ther future...But I figured I would mention them, and see if any of you have any good info about them....

Life is hard...but I guess we manage

Sincerely Yours,
Alyson (New Jersey)

[This message has been edited by moderator3 (edited 02-19-2002).]

Dear Fanny,
I know it has been a while since you have posted your message, but I would like to inquire about the procedure your son use undertaking. My name is Armando and I have a brother that has CP. All four of his limbs are affected and we have cared for him his whole life. Although he is now 36 I still have hope and lately have used the wonderful world of internet to try and gather new info on CP. My parents are from Mexico and were not very advanced as far as education goes. Also back then we weren't as advanced as we are today in modern medicine. David is very intelligent and aware of his surroundings. He lives with my parents as he always has and my brother and I go to their house every day to give him a shower. We feel any little help takes some stress off of my parents. As my parents get older I think more and more of David's future. It would be difficult for us to send him to a home of some sort since he has always lived with family. Today's society is so fast paced that it would be almost impossible to give him the care he is accustomed to. That is why about a year ago I felt that I had to do something. He has just had the baclofen pump implanted and are starting therapy with botox also for his arms. If you could let me know of this therapy procedure your son is going through I would deeply appreciate it. I wish you the best with your son, it sounds like the effects are promising.
Sincerly,
Armando

Dear Armando,

David is so lucky to have a wonderfull family that supports and helps him!
A year ago our neurologist told me that we also would need a baclofen pump to be installed in Lan's tiny body. Today, 8 months later, he changed his mind and said it isn't necessary at all due to the improvements that Lan made. Of course it is easier to have spectacular results with a small child because there aren't malformations yet. The ANR-therapy takes about 5 hours a day. You 'work' on the body, not on the limbs. When the breathing and muscles are restored, the limbs automaticaly will improve. Every six weeks we go to England to learn new exercises. It is a very soft therapy that consist to make the lower muscle-layers stronger by softly pushing with your hand on the chest, abdomen, back, pelvic floor, shoulders, etc.. But the results are amazing. For the first time the russian team told us that Lan could sit unsupported within the next 1000 hours of therapy.
As you can see, it takes a long time but i'm sure that Lan will improve. His limbs are less spastic and his body is developing without malformations.
Give my love to David. Tell him to hang in and keep faith! I appologize for the mistakes i make in English but i presume you don't understand Dutch...
Please don't give up and continue to support your brother the way you do.

ps: a big kiss from Lan!

Fanny

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[This message has been edited by moderator3 (edited 04-26-2002).]

Fanny


Have the treatments improved yet? Is he now sitting by supporting himself? Your last post was about 2 months ago. Please give me some more info on ANR- its something i wouldnt mind hearing about (for my daughter with CP)
thanks,
~Alyson~

Dear Alyson,

We are leaving tomorow for the UK for our 7th visit.
Lan is doing very well. He is improving. The changes on his body structure are amazing. We now did about 850 hours of therapy. They told us he'll be able to sit after +- 1800-2000 hours. So, we'll expect the results in a few months. But the improvements that he made so far are very promissing. The Russian team is training staffmembers to do the therapy in Canada.
You can ask them for more information.

Good luck Alyson!

Fanny

[This message has been edited by moderator2 (edited 09-11-2003).]

Hi Fany I posted to Alyson about my grand son Camron but I will tell you his story : My daughter had a uterine rupture while in labor with Camron and that rupture went unnoticed an emergency section was performed but Camron came into the world in total cardiac arrest as well ther was no brain activity he was placed on life suppory at the third day of his life the medical team spoke to my daughter and husband and told them the prognosis for their baby boy was not good and a recommendation to remove the life support was in order as he was a physically strong baby at 81/2 lbs and to keep him alive on life support would be the wrong thing to do, a decision was made and the day my daughter went from her hospital bed to the childrens hospital to say goodbye to her son she couldn't do it and asked the doctors that she have one more day with Camron. Well as I said in another post the story from than on is a very long one with tears and fears and heartbreak but the bottom line to all of this is Camron will be 3 on July 23, he is now learning to walk with a walker , he can count he knows all of hhis albhabet and his colors he speaks plainly and has a great command of the english language, he finds funny in all things and we idolize him and he loves me his nana and the most wonderful thing about this story is the physio department at the childrens hospital were filming him one day as part of their education program and Camron sat up for the very first time he was exactly 1 year old and before that day he had to be turned and the usual care given to a child that was aso severly brain damaged as he was.
What happened here ?? No one seems to know we all saw his scans and we all saw the damaged to his little brain and doctors from all over were consulted as decisions like removing life support are never made lightly.
Camron was a gift from God in the beginning and on his journey here he got broken somehow but his sister who was 4 at the time put it this way in her own little words."When Camron was being born God must have been busy somewhere else and when he (God) found out he was broken He came back and fixed him. Well someone fixed him alright they didn't make him perfect but in our eyes he is perfect and he is testament to the fact that NO ONE KNOWS about these cp children and what they are capable of as someone said rearlier in this post the doctors can give the diagnosis but after that they can't begin to even guess how these children will progress.
God Bless everyone of you those that have cp and those that care for cp I personally feel that God has blessed me and my family by giving us the beautiful baby boy who can now look at you and say My(he calls himself my) can't walk don't you know "
I hope this story brings some hope and encouragement to some of you. Jerri

To Fannie Hendrickx:
I just read your old posting, and wondered how
you and your child are doing with the ANR therapy?
I have a 7 yr. old son with CP and just learned
about ANR.
Thank you,
Sheri, mom
to Rex
Delray Beach, FL, USA

Dear Fanny, I have 4 and half year old son, who is quadriplegic due to CP, He also has truncal dystonia because of which he cannot sit, we have tried everything (homeopathy, naturopathy, alternative treatments and currently on botox) for him along with PT, your post below caught my attention and I would request you to pass onthe details of the centre in UK. if possible please email me at [removed].


My son (21 monts old) has cp. We just returned from the UK where we are following a new therapy. It looks very promising and i talked with several parents from all over the world who told me about the amazing progress the children made. The Advance-team also treats children in Canada and later on in Belgium. We are very hopefull because one mom told me that her 3 year old daughter started to sit unsupported, something her neurologist said she would never do.

Fanny

[This message has been edited by moderator3 (edited 02-19-2002).]

hello,to everyone !
this is to inform you that there is a new drug which is an alternative to botox. which in non-toxic to the body.
I hope this information is helpful to some of you,I will keep you inform of what I find out.
vicent

I really want to know more about anr. I am willing to learn anything that might help my son, 16 months old.

hello,to everyone !
this is to inform you that there is a new drug which is an alternative to botox. which in non-toxic to the body.
I hope this information is helpful to some of you,I will keep you inform of what I find out.
vicent



Have you heard anything more about this alternative. My sons pt metioned botox for his thumbs and I am pretty gunshy about it
Thanks

to everyone this is the information about botox this are some of the web sites that have an alternative to botox injections [removed]
vicent

to everyone this is the information about botox this are some of the web sites that have an alternative to botox injections [removed]
vicent

About the oxygen(sp) therapy.

My boss's daughter who is now 21 years old went through 2 segments of (i think) 8 each. The treatment helped very little and any improvement was temporary. It was such a let down.

It is expensive as well. They want their money up front and they do not issue refunds.

It was my opinion that they offer false hope to these families which I think is just really sick!

My boss and his wife were told that their daughter would never be potty trained, wouldn't be able to sit up by her self, walk, talk, etc. She does all the above. She is currently enrolled in college and is going to be in special needs education. She recently married and is overall leading a great life!

About the oxygen(sp) therapy.

My boss's daughter who is now 21 years old went through 2 segments of (i think) 8 each. The treatment helped very little and any improvement was temporary. It was such a let down.

It is expensive as well. They want their money up front and they do not issue refunds.

It was my opinion that they offer false hope to these families which I think is just really sick!

My boss and his wife were told that their daughter would never be potty trained, wouldn't be able to sit up by her self, walk, talk, etc. She does all the above. She is currently enrolled in college and is going to be in special needs education. She recently married and is overall leading a great life!

Cerebral Palsy is damage to the Cerebellum. The Cerebellum is part of the Brain. In simpler words, Cerebral Palsy IS Brain Damage! Can a Brain be repaired? Not yet! But they're working on it...

Hello,

I recently got married and am very happy with my husband. I am pregnant now. can I have a normal delivery. Please help me

God bless you.