Hi Mary,
Hope all is well with you. Sorry it's taken me so long to get back in touch. I've been working really late and haven't had much time for anything, as usual.
Alexander was home yesterday. It is Election Day and schools were closed. He developed a bacterial infection in his eye and was sent home from school early on Monday. No big deal. Brought him to the opthomalogist and he prescribed eye drops to clear the infection. He looks funny with his eye all red. It amazes me that he hasn't had problems with his eyes sooner as he's always sticking his finger in his eye or rubbing it.
During our consultation with his doctor we found out that Alexander has bacteria pockets in his stomach which is the cause for the inflammation within the stomach walls. This condition is a precursor to getting an ulcer. He is now on medication. He takes Amoxillin, Flagyl and Zantec. The Flagyl doesn't come in liquid form so we crush the pill and give it to him disguised in a spoonful of chocolate ice cream. No argument when taking his medication. This dosage of medication should clear up the problem in two weeks. The Zantec has to be taken for four weeks.
The holidays will be here soon. There's so much to do. Alexander likes when I
decorate the Christmas tree. It amazes me that he doesn't touch anything. He
just sits and watches it. Alexander is an only child. When my family visits,
Alexander gets beyond excited. He just drags everyone by the hand and takes them
on a tour of the house. He points to everything and you have to tell him what it
is. Then he does his little dance. He's too funny sometimes. Always knows how to
make me smile.
Regards,
Aida L. Lauricella, Long Beach, NY
Thanks for your kind response. I am re-reading your website. It was
simultaneously disconcerting and joyful for me yesterday as I've been waiting
for 7 years to know so as to be of better help to Shane. As such I was scanning
through websites with a frazzled mind. I will endeavor to do better today. I'd
like to know how many % of the population is afflicted by this rare disorder -
not only in America but worldwide. Are you a parent as well as President of this
foundation? What services does this foundation provide? Is there one here in
Columbia MO? If not, is it possible for me to seek your help in setting one up
here? I'd like to help all parents and families involved in my area. Does one
join and become part of this foundation or how does it operate? Does the
foundation hold annual meetings/gatherings for parent/family info exchange or
interaction? Please excuse me if the questions should come out
ignorant/irrelevant. I hope to hear from you again. Once again, thanks Mary.
Phebe Kanaratnam, Columbia, MO
We don't have any hard numbers on how often CLS occurs in the general population. It is considered rare.
Yes, I am also a parent. I started this in 1990 as a way to get more information to help my own son. He is 14 now. The foundation consists of me and my PC, plus a lot of interested, involved families. This is an elite club you've just joined. :-) We're pretty spread out. I service maybe 250 families around the globe. Many of us have never met another family with a CLS child. We exchange information with each other, and often know more about what is going on with our kids than the medical professionals who treat them. We haven't had a gathering to date, although one of these days I probably should attempt to set one a conference. Maybe I could enlist other parents to help me with that as I work full time at Microsoft and never seem to have enough time in the day. -MCH
Allen made it through his oral surgery last week with flying colors. It was a
long ordeal and he did have problems with his airways but since everyone had
been notified to be especially watchful for this problem, it was not as bad as
it could have been. He bounced back much faster than we ever imagined and he
goes back Monday to have a look at the sutures. He is taking his regular soft
food diet and drinking just as before with no problems. Lanette and Denny (along
with daughters) are taking wonderful care of him and he is thriving. Of course
his nurse is great and it gives Lanette a much needed break every few days.
Lane & Hilda Ellzey, Jacksonville, TX
Hi Mary,
I am finding this hard to write, but we have been told that the operation for Matthew's scoliosis is too hard to do because in Matthew's case his lungs will not be able to stand up to the operation, because his spine is already putting too much pressure on them. We have had an opinion from the best doctor in Australia and some other doctors and they all have the same answer. They are all quite sure that if they operate on Matthew that he will not make it through the operation. Is there any thing that we can do that can help Matthew's back pain that seems to be worse some day's than others? We also have to try to get him into another school for integration next year as the one he is going to feel that they cannot cope with his safety any more .They are scared that he will hurt himself when he loses his balance and falls over. It can sometimes happen up too six times a day. The next day he might not fall over at all or he may fall over once or twice. We think that he seems to be worse when he is tired.
We were stunned when we heard about the plane crashes last week. We hope that you did not lose any friend's or more importantly any family members.Our newspapers and news broadcasts have been full of all the news from America.
Lawrence & Margaret Allen, East Geelong, Victoria AUSTRALIA
This is outside of my area of expertise. I wish I could be more helpful. Is Matthew is any kind of brace? As for the falling, is he on any medication? Have you tried Baclofen? Have you considered just putting him in a wheelchair for his own safety?
I did not lose anyone I knew in the NYC attack. I did, however, have a childhood friend you was vacationing there and had visited the WTC the day before. She was quite glad to be back home safely. -MCH
Hi Mary,
The doctors did not put Matthew in any kind of brace because when we found out that Matthew had scoliosis they said his spine was just past 50 percent out of alignment and that it would be of no use to even try using a brace. We have not tried any medication for his falling . I think that the doctors in Australia don't know much about the treatment for the drop attacks or his falling over. As for the last time I tried to put Matthew in a wheelchair when he had a sprained ankle, the doctors did not like the idea but at that time is was so he would rest it for a few days at the request of the school physio. The doctors just wanted him to keep putting his weight on it.Matthew did that anyway because every now and then by leaving his wheelchair on the front porch so that he could walk down the stairs and look at the cars going past our front gate. I have a another appointment with the specialist next week. I will ask him about these idea's .Thank you for the information. I will let you know what happens.
Hi Mary!
Hope you and your family are well.
I have been meaning to write for a month to let you know how our transition from Klonapin (generic-Clonazapam) to Baclophen for Matthew's drop attacks has gone. I will try not to make this too long, but really would like other families to have this information. I called Matthew's neurologist to ask about it, and as usual, she trusted mine and your research and agreed to try it (Baclophen). Well, they did not mention a period of 'transition' from the Klonapin. I called back and asked if I should gradually decrease the dosage over a few days, weeks, etc. and was told "You can if you want to.- Three days should be fine." So that is what we did. We also gradually (3 days) increased the Baclophen.
Well that was the start of a roller coaster (both good and bad) for our entire family for weeks. Matthew started vomiting violently at school. We all assumed it was a virus. He is very rarely sick. The vomiting lasted about two days.
Coincidental to the vomiting, he starting having difficulty sleeping. He would wake up several times during the night. Once again we assumed, at least at first, this was because he was 'sick' from the 'virus'. It is all so obvious now, but then it really wasn't.
After about 5 days of this (the vomiting only really lasted for a few days, but still, Matthew didn't seem 'well') I happened to be watching a segment on TV where they had interviewed Stevie Nicks-Fleetwood Mac (20/20 was the show, I think). She talked about her addiction to Cocaine in the 80's and how she had entered a rehab facility to beat it. Shortly afterwards, she stated that she started seeing a psychiatrist for depression and he prescribed Klonapin. Boy, did I perk up.
She said she experienced many side effects from the drug, but the worst was how extremely addicting it was. She said she had never struggled harder with anything (even the Cocaine addiction) than her Klonapin addiction. She said it took 47 days to beat it, and they were absolutely the worst 47 days of her life (vomiting, abdominal pain, sleeplessness, etc.)
I couldn't believe what I was hearing. Matthew was experiencing the same symptoms (maybe not as severe, though). It took 3 weeks before Matthew's regular sleep patterns returned. The most remarkable changes happened at about 2 weeks. He started eating lunch again (and snacks) during the day. Before when he was on the Klonapin, he would never eat snacks or lunch. Sometimes he wouldn't even go in a restaurant if we were eating out. He would have to be forced (picked up and carried) into the restaurant. We had all (physicians even) attributed this to the meds he takes for behavior - Concerta (time released form of Ritalin). It wasn't that after all, it was the Klonapin. The eating was a big thing for us, for Matthew is very skinny and we were always trying to force high fat/caloric foods on him. Other changes included better behavior (OK- it is not perfect, but we definitely saw an improvement), he started to be more vocal, trying to immitate/approximate sounds/words much better than before and the most obvious and the hardest to describe is that he just seemed to be here and be more aware of things around him.
As you can imagine, this was a huge milestone for Matthew. I feel like I was
meant to hear that Stevie Nicks story to help answer many questions I had, and
would have in the coming weeks. It is truly a miracle that I happened upon it.
As far as the drop attacks go, he still has several a day. He currently takes 10
mg of Baclophen a day. I will be calling the neurologist to check on increasing
the dosage. This newsletter and our network is SO important to the lives of our
children. If I had not known to try Baclophen, we would still be on the Klonapin
- I am sure. While this was no way a cure all, Matthew's quality of life has
increased dramatically with this medication change. I thank you, Mary, for your
work, and I thank other parents for sharing their families' experiences with the
rest of us.
Larry & Theresa Moxley, Madison, AL
Dear Mary,
I thought I would write to you to let you know how Mark is doing. On Tuesdays at school he does swimming and Wednesdays he goes horseback riding. He seems to enjoy both of them. He has a certificate for both of them.
Back in the summer, I had a letter from his geneticist. They have finished testing him but couldn’t find the mutation that was causing his CLS, but they do agree that he has it. They said that they couldn’t find it in half of the children that they tested, but weren’t planning on doing any more testing as yet. But if a better way of testing came up they would ask for him to be tested again.
He is walking bow on his own but lately he just seems to keep on falling
over. I don’t know if he is just falling over his feet because he keeps on
rushing about. I have to keep a closer eye on him now as he gets into everything
but he has no sense of danger. Still he has fallen down the stairs as he wasn’t
watching what he was doing, but all in all since we moved it has done him and me
good. He is getting on very well and I have gotten over my depression and am not
on antidepressants anymore. The other 2 are doing well at school as well and
aren’t getting bullied anymore.
Yours faithfully,
Jacqueline Blyth, Bedford BEDS, GREAT
BRITAIN
Hi Mary,
I hope all is well with you. I just wanted to update our address and let you know how Courtney is doing.
Courtney made the move OK. The only problem we are facing right now is that
they can't find a school program to meet her needs right now. She was in a
preschool program with a one on one aide that she was doing really well with,
but her aide was transferred to an other job. They tried to replace her with
someone that did not get along with Courtney. She has been out of school now for
3 months. They are hoping to place her in a near by school system with some
kindergarten age kids. I will let you know how we make out.
John and Christine Rego, Unity ME