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has anybody found useful info

HARLEYSPARENTS
0 Recommendations

hi. our son harley is 8 months old have just spent the last 10 weeks in hospital with him having seizures, was inshubated 3 times due to having prolonged seizures. he then started having vacant episodes. the medication he is on seems to have stopped all seizure activity fingers crossed. they have done loads of tests and scans they have told us that they think it is alexanders disease by the scans but are awaiting results. we just dont know what to expect or how harley is gonna develop. would lorenzo oil work or the other oils available. is there any specialists worth contacting as our specialists dont know much about leukodystrophys. all we get told off our doctors is to google it. any help will be appreciated.

Explore topics in this discussion:

Leukodystrophies Seizures Keppra Fever Leukodystrophy

18 replies

mason5852

My 5 year old daughter got tested for Alexander's Disease on June 29 and we are still waiting on her blood work as well. I don't know anything about Lorenzo's Oil or any other oils that can treat the condition. Just speaking from my personal experience however I would not google anything on Leukodystrophy. I did this (against the advise of my daughter's nuerologist) when I first heard the word Leukodystrophy and I was sorry I did as there are A LOT of bad things on the internet. My daughter's nuerologist advised that if I did look up anything to go to the United Leukodystrophy Foundation website as it is the most accurate since that is their study. Every case is different too. My daughter got diagnosed with a leukodystrophy back in April 2008 after having had her second 30 minute siezure. She has been tested for numerous types of leukodystrophies and mitochondrial diseases and so far everything has come back normal. We should be getting her test results from the blood work for Alexander's Disease in the next couple of weeks. I will be praying for your little Harley.

HARLEYSPARENTS

hi sorry to hear about your daughter. have they managed to control her seizures. now they have controlled harleys seizures he has atated smiling again although i think he stopped smiling due to the amount of drugs he was on. all he did was sleep when he was awake he just looked through us like he'd never seen us before. now he seems fantastic. before he became ill he was behind on his development had only just started holding his head was never really interested in his toys. now he is starting to hold his head and yesterday has started grabbing his toys and put his hand in his mouth. so there is lots of hope he is developing which we was told he wouldn't do. he's our little star and keeps proving the doctors wrong. was told he would never eat which he does. hope your daughter is ok. how is she development wise. i'm in the uk are you?

2001mom

I am so sorry to say that there is no cure or treatment at this time.My 8 yr.old girl, Hailey , has it and we have seen about 12 doctors over the years. We attended the 1st Alexander Disease meeting last year and met doctors from around the world. Good nutrition is important, I was lucky that I was able to breastfeed Hailey for the first year of her life. Now we give her an Acai berry juice blend, whole food vitamins, and therapy everyday. Hailey's gene mutation is R79H. her blog is www.caringbridge.org/visit/haileyknecht .You can check it out and see pictures of her and read her story.

MBA28

I am very sorry to hear about your son. Many of us were confronted with the same situation; a tentative diagnosis (in our case after searching for 28 years) but no physician who knew much about the disease. I strongly suggest that you attend the next ULF conference with all of your son's medical records and meet with the experts in the field. That is what we did and received most of the answers we were look for.

2001mom

When Hailey got her diagnosis a friend told us about the ULF. It just so happened that 6 months later the ULF held the 1st alex. d meeting ever and it was in Illinois where we live. we were told by doctors how rare this disease is ,but literally every week we are hearing of another diagnosis. Contact Janet at the ULF and ask her for any info on alex. disease she has. They even gave me a list of other parents to talk to. you can contact me , too.
dawn knecht
dawnknecht@hotmail.com

Dexter

Hello...I couldn't agree more with the others that have suggested contacting and working with the ULF. They are an amazing group. We've attended 2 of their conferences and both were phenomenal. They may be able to suggest a physician or clinic in your area. We currently take our Sean (he's 5) to the Mayo Clinic in Rochester, Minnesota and the pediatric neurologist he sees has 5 or 6 other Alex patients. You can read more about our son Sean at www.seanscastle.com. I am not an expert but I've heard Lorenzo's oil won't work for Alex patients. For the last month I've been giving Sean Lecithin (oil) which is supposed to help with myelin formation. I don't know if it's helping but it's not hurting. We also give him Flax oil. If you have any questions please ask, nothing is off limits.

Blessings,
Carin

HARLEYSPARENTS

what is lecithin oil and flax oil. where do you purchase these from. we're willing to give anything a go if it might help. the problem is were in the uk. our local hospital policy is not to confer with other hospitals, so think our son isn't getting the care he needs. read on the internet a little girl in birmingham (UK) is 6 with alexanders and her specialist had travelled to the states to check out a trial which is going on this was november last year. our doctor dissmissed the idea saying you cant believe what you read on the net. all we wanred him to do was try and contact this doctor to discuss this. how old was sean when he first showed signs of alex.d. will check the link out also.

2001mom

Go to your local health food store and tell them everything that is going on, they were very helpful to me. Your baby Harley is too young for most things now , but at one year maybe you can try them. Just ,please , never give up hope! I always treated Hailey like a normal child and had her try her hardest at everything. she is still talking and eating and walking at age 8 years. She is like a 4 yr.old mentally, but so loving and kind hearted. you can get flaxseed oil at www.barleans.com but it think Harley may be too young.

HARLEYSPARENTS

has anybody had any problems with the drug phenobarbitone. harley was on 45ml twice a day, was on epilum cant remember exact dose think it was 50ml twice a day and clobazam 2.5ml a.m. and 3.8ml p.m. harley was always asleep when on these doses. these was all to stop his seizures. we argued for days with regards to the sleeping sometimes we couldn't even wake him up. also didn't smile for 5 weeks. harley is now on clobazam as above and 40 ml phenobarbitone once a day. within one day of new doses he was awake more and started smiling loads. anybody else experience this. been over 2 weeks no signs of seizures not even just the vacant episodes he was having.

Dexter

I'm very sorry to hear about the seizure trouble Harley is having. I know another family whose 8 wk old daughter has Alex and has had a very difficult time with seizures. I will contact them and see what medication she is on now. I know they tried Pheno. and that is a really yucky seizure medication.

Again, I'm not an expert but the little I know about lecithin is that it's naturally occuring in a lot of foods. Usually the conentrate is made from either egg yolks or soy beans. It is essential for cell membranes and myelination. I don't know if some forms (egg, soy, beef etc) are better than others. I can buy lecithin and flax oil from our natural foods store.

We noticed developmental delays with Sean when he was about 8 weeks old. He currently takes Keppra for seizures.

HARLEYSPARENTS

been searching on the net found this in america. has anybody else come accross it.

http://www.medra.com/patient_histories.html

the guy is ringing me up at somepoint. 1st treatment is 30k usd and any further treatments are 12.5k usd.

i know these are expensive but i'd find more than this if needed to save my little boy.

any advise or help would be appreciated

HARLEYSPARENTS

advise really. Harley is teethin at the moment so not getting alot of sleep over the last 2 weeks. He is in hospital at the moment having seizures usually on the hour every hour. They have increased his clobazam to 5ml twice a day and introduced sodium valporate 2.5ml twice a day.. Trying to wean him off phenobarb.they slowed down today happening only when he had food or drink. When he has them he seems to dribble acidy or clear fluid from his mouth. He pulls a weird squashed up face with his mouth and eyes deviate to the right and all other parts twitch very fast and blinks fast too. His right hand twitches. Other three limbs go really stiff. Has anybody else had these type of seizures and was it down to some sort of reflux. Or is it his condition getting worse. Just finding it hard as he has been brilliant over last few weeks holding his own head and grabbing toys. Any advise would be appreciated. We hope its his teeth or some sort of bug he's picked up as he is showing signs of a cold. Many thanks in advance

rhess3

I am 100% SURE THAT MEDRA IS A SCAM!!! pLEASE , PLEASE DO NOT GIVE THEM ANY MONEY!!!!!!!! iT WAS ON OUR AMERICAN NEWS THAT IT DOES NOT WORK AT ALL!!!!!!!!!!!!!!!!!!!!
2001MOM

glider04

I'm a grandpa to the little beauty in the picture. She was diagnosed with Alex 1 day after her 1st birthday. We were told that Alex is a genetic mutation. Maddie has the mutation but neither of her parents do, so it's a true mutation. She is now on 4 different meds along with taking Zinc. the Zinc helped with her appetite or at least the will to eat. From what I've found Alex is different in every person, so do your best to keep her active and eating.

2001mom

How is harley? hailey has those seizures when she had a fever. she would look like she was going to die. she sort of out grew them at age 4 and then just has the petit mal or absence seizures since.

HARLEYSPARENTS

hi just had a week away at a local seaside resort. harley was good first few days but then started these staring seizures again, not twitching though. harley still hasn't smiled for a couple of weeks now maybe just the meds he's on. anybody else experienced loss of smiling etc..

Teensie34

The Medra Clinic is very dubious.

BBC exposed medra and a clinic in China. Dr Rader tells an MS patient wearing a hidden camera, that all of his MS patients improve and they have MRI's showing remyelination.

Sure!

The entire prgram can be viewed at youtube

type truth about medra, there are 4 parts.

Before you wire your $30,000 dollars to the Bahamas you should do your research.

http://www.youtube.com/watch?v=qF6XQPKawwk

http://www.youtube.com/watch?v=lnaNguAJsrQ&feature=related

http://www.youtube.com/watch?v=BaY9wOmQpQo&feature=related

http://www.youtube.com/watch?v=QfM1NKFOKkc&feature=related

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