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Alexander Diesase - Juvenile

gaby018
0 Recommendations

Hi!

My name is Gaby and I have a wonderful brother (16 years old) just diagnosed with Alexander Juvenile.

My parents knew something was wrong with my brother since he was 9 yrs old. He was misdiagnosed until he was 13 yrs old (when another doctor found out he had hydrocephalus and needed an urgent surgery - then the doctors operated him install a valve/shunt)... Although they live in Argentina, my parents went to Mayo Clinic in Rochester, NY and Israel still looking for a diagnosis... until two weeks ago that they found out the diagnosis...

His "Alexander" symptoms are mild so far: he talks, he eats (no problems with swallowing or vomiting) he is spastic but he runs/plays/walks.etc.... most of his problems now are social with pals since he is delayed (like a 10 yrs old)

He is a sweetheart but he has depression, gets dizzy very often, talks slowly, is hyper reflective and experience a lot of pain from the waist down to the inferior extremities, sweats a lot, does not walk correctly, pees on the bed at least once a week, sleeps only a few hours without resting, every once in a while his hands and/or feet dumb, and he tries very hard to express himself. As he says: “I think faster than I can talk”. Juan is now 16 with a developmental age of 10.

I am trying to get in touch with parents with same diagnosis and get recommendations and resources regarding expert doctors in the disease.

Thanks in advance!

Gaby

Explore topics in this discussion:

Depakote Dizziness Surgery Hydrocephalus Occupational therapy Eczema Seizures Physical therapy Constipation Pain Memory Depression Keppra Leukodystrophy

15 replies

CIDERFOUR

Dear Gaby, I am so proud of you for trying to help your parents and your brother! It must be difficult for your family to know that your brother has this terrible disease. My prays are with you.
I have Alexander's disease that was diagnosed four years ago. I am married and have two children, a daughter that is 25 and married, and a son that is 23 and still is going to college. I am now 59 years old and have lived with this disease for awhile. So far my biggest problem is I have difficulty swallowing, as you said your brother does not have this problem yet. I advise you to tell him to eat slowly and chew for a long time if and when he develops this problem. I have difficulty also with dizziness and walking correctly, but I have learned to find activities that do not require a lot of movement. I understand your brother's difficulty with school, I used to work with special needs children, maybe these suggestions can help. Tell your brother to listen to what the kids say (I am sure he is intelligent even though his ability is of a 10 year old), when he gets home he should talk to you about what he heard and maybe someone can give him suggestions about what his friends are talking about and advise him how to become a part of the group. Yes, at his age it is difficult to fit in when he does not mentally understand what the kids are talking about, but I'm sure if he hears what they say and tells someone at home, you can help him. I can't say that this will work, but it is worth a try.
Gaby, good luck. I hope my advice helps. I understand what your family and your brother are going through. Yes, it is difficult for everyone, but if you try not to worry so much and be happy together everything will seem better. Enjoy your days together.
Love, Connie

gaby018

Thanks Connie for your lines - I really appreciate them and I will give to my parents all these recommendations.

Sorry so many questions...
What type of treatment are you getting now? Do you know if the progression of the disease will make him having problems swallowing? What doctor is seeing you? Where do you live?

I also wish all the luck to you!!

CIDERFOUR

Hi Gaby, how are you today? I do not have any treatment because my neuro-oncologist tells me there isn't anything they can do. Not many people know about this disease I am told. Gaby, I don't know if your brother will have difficulty swallowing, you'll just have to wait as time goes on. My swallowing problems began three years after my diagnosis.
I live in Wethersfield, Connecticut, where do you live?
Have a good day and think happy thoughts.
Love, Connie

gaby018

Thanks for your reply Connie!

I live in Florida but my brother and parents live in Argentina.

My brother's doctor shared a publication/Case report regarding THR (thyrotropin releasing hormone) treatment on a girl in Japan (by Dr. Keiko Ishigaki) and he thinks my brother could benefit from that treatment. Have you ever hear about it?

I hope you have a great day and weeekend!

Gaby

2001mom

Hi Gabby,
I think your brother may have the infantile type . My daughter has that kind and I have researched it for 2 years. My daughter is 8 years old. She sounds like your brother a lot. I give her acai berry juice everyday and she has done well. It has the esscential fatty acids and fats that are so good for the brain. i also give her fish oil, a lemon flavored kind from www.barleans.com. you can read about Hailey at www.caringbridge.org/visit/haileyknecht
read all you can on it. Also, do not trust Medra or anyone from Medra. They are not good people, they lie and steal your money promising a cure.

gaby018

Thanks for your post 2001mom and sharing your daughter's story/life.... Can i ask you who is medra? My brother's symptoms started when he was 9 years olds and i guess that's why the doctor diagnosed him juvenile form of alx...
Can i ask you what changes had you seen with the acai berry and fish oil?

Thanks for sharing!
Gaby

CIDERFOUR

Good morning, Gaby! Hope you are well today. I have not heard of THR treatment so it might be ok, your brother's doctor will know (I think). Maybe you can look it up on the internet to find out what it is and does. I will do the same.
I like that picture..Is it you and your brother? You are both cute with happy smiles.
Today it is a rainy day. Rainy days are so peaceful.
Ok, take care and you too have a good weekend.
Love, Connie

CIDERFOUR

Gaby, I just looked up THR and discovered it is a hormone that works on the thyroid gland. I don't see the relevance to Alexander's disease, but I don't know about your brother's diagnosis either. All I can say is trust the doctor, at least he is making an attempt to help. Good luck.
Connie

rhess3

hi Gaby, 2001mom here, using My mom's computer. Hailey saw a great increase in her speech and vocabulary with the acai berry and fish oil and her memory is awesome! she also had constant constipation her entire life and that was completely cured after 2 weeks on the acai berry juice. as was her eczema and her hair and nails are beautiful. It also helped her with her mood swings, from her drugs. She takes keppra and depakote for her seizures.
Medra is a company in the carribean that scams people by promising to cure all these diseases. All you have to do is send them $30, 000.!! my poor Mom almost fell for it, she is so desperate for a cure for Hailey and herself. (she has MS or a leukodystrophy) They sound like they want to help, they sound genuine, they are not, I assure you. google "medra scam" to see for yourselves.

gaby018

Thanks 2001mom. Your your answers. I will let my parents know about acai and fish oil, so thry can try it. Also i will make sure my parents will be away from medra!
Thanks for sharing and good luck with Hailey.
Gaby

gaby018

Hi Connie,
i hope you feel good today. There's a case in Japan of alx juvenile that is being treated at this moments. We email the doctors in Japan and they say the girl is doing good with that treatment for the last 5 years, and that's why I wanted to see if anyone has any experience with the treatment.... To get more input about it... Let me know if you want to see the ase study (i can email it to you).

Have a great day!

Gaby

CIDERFOUR

Hi Gaby! Thanks for your e-mail. Today is a good day, thankfully! It is very thoughtful of you to ask if you can forward that case study. I would appreciate it if you could e-mail it to me although since I have the adult form I'm not sure I qualify for treatment. Kids have a different progression of the disease. It would be interesting to learn how it is being treated. Thanks for thinking of me!
Have a great week.
Connie

Dexter

Hi Gabby...I'm very sorry to hear about your brother's diagnosis. My son also has Alex, he's 5. If you'd like to read about him we have a website for him. Please visit www.seanscastle.com I would very much like to read the case study on THR treatment. Would you mind emailing me a copy? My email address is carinandjeff@yahoo.com If I can answer any questions you have please ask, any question is fine. When your brother went to the Mayo Clinic did you mean Minnesota? We live about 2 hours from the Mayo clinic and Sean goes to the Mayo regularly. Which neurologist does your brother see? Sean sees Dr. Deborah Renaud. We really like her.

Take Care,
Carin

mason5852

Hello Gaby,

My name is Mandy and I just read your post about your brother. My five year old daughter also suffers from Alexander's disease. They have dx. her with the juvenile form as well. She began having problems in April of 2008 and we finally got a diagnosis in May of this past year. I guess a year is not too long to wait though as your brother waited for several more years and so have a lot of other people on this sight. Anyway, my daughter is developmentally delayed and has been since birth. They originally attributed this to her having Copacephaly(?)...which basically means her brain was abnormally formed and she had a little more fluid on one part of her brain. Anyway, aside from her delay the only other symptom she really has is daily vomiting, which she has been having since April 17 of this year. She was recently prescribed Zofran which has stopped/decreased the vomiting luckily. She is currently going to full day Kindergarten and receives occupational therapy, physical therapy services and developmental therapy. She is very smart and she continues to make progress daily in her language skills which is her biggest delay...everything else is about where it should be. I am sorry about your brother...I will keep him in my prayers.

Mandy

gaby018

Thanks Mandy for your post and I also wish you luck and happiness with your daughter...
Can I ask you why her Dx is "juvenile" form if she is only 5? Where was he diagnosed? I am sorry to hear she's vomiting...

Have faith and enjoy her!

Gaby

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