Help Please Re: Sudden Dramatic Bone Density Loss

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Kristine

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Our daughter was diagnosed with Lennox-Gastaut Syndrome nearly 23 years ago; she is now 27. After years of a diverse use of medications she eventually required the placement of a feeding tube, through which she receives both her nourishment and medications jejunally (anything received gastrically generally ends up being vomited).

Now we are moving on to a new concern, again believed to be a secondary condition from the treatment of her LGS. She recently experienced a third broken bone, each which followed very minimal falls. Her bone density has been monitored for the past eight years, and recent testing is showing a 15 - 20% drop in the density. There is now concern that she may experience further breaks upon seizing alone. Extensive testing has found no cause for this loss of bone density, and the diagnosis may end up being idiopathic pre-menopausal osteoporosis. Unfortunately, this again means an unknown (idiopathic) cause leading to further treatment (medications) which may again cause further harm. We were told that some standard drug treatments for osteoporosis could be exactly what she should not receive if she might have an extremely rare disorder for which testing is difficult to accomplish. Does anyone have experience that may be of guidance in this area before an irreversible type of treatment is directed?
 
Welcome Kristine

I'm so sorry to hear about your Daughter. I know there are some people on this site who have children with Lennox-Gastaut Syndrome.

I myself am having problems with osteoporosis but I'm lucky in the fact that we know that it's the anti-epileptic drug (Tegretol) that I'm taking that caused it.

The only thing they could do was put me on Calcium & Vitamine D.
 
I wonder if anyone knows if Keppra causes bone loss? I need to look into this... As far as the above bone loss problems I recommend that both of the people who posted above think about Prolia a new osteoporosis medication in addition to their calcium and vit D supplements.
 
As far as the above bone loss problems I recommend that both of the people who posted above think about Prolia a new osteoporosis medication in addition to their calcium and vit D supplements.

Thanks for the suggestion but I'm assuming from the fact that it lowers calcium blood levels that Prolia is good for those that have trouble absorbing calcium.
 
Thank you for the reply! I'm very happy that your prescribed management of Calcium and D are offsetting the Tegretol. The very best to you as you continue watch over this issue.

Our daughter has had her calcium and D stabalized now for a number of years when we first began monitoring her bone density. She is also on a variety of anti-epiletic and other medications that need to be explored as suspect for this recent trigger of bone density loss; she has been on these for a long period of time. The question is where to start and at what risk of increased seizure activity do we dare to tamper with her current regimen.

Of the medications she is taking that we think need to be explored for this issue are: Felbatol, Valproic Acid, Phenobarbital, Citalopram, and Prevacid (generically known as Lansoprazole). We know that Prevacid is listed for such a side effect.

In our daughter's case, however, it is not just simply an issue of Prevacid that may be causing this dramatic loss in bone density. All the obvious have already been ruled out (i.e. early menopause, cancer, etc.). There is a greater unknown that her doctor (who has been very diligent and skilled in this cause) is not able to identify. So, we are seeking knowledge that anyone else may have already gained by having gone before us on this issue. Any leads that may get us pointed on where to look next will be so appreciated! Thank you.
 
Sorry Kristine, I didn't mean to imply that my supplements are necessarily offsetting the effects of Tegretol, just that it's all we could do for now.

I do wish you good luck finding a good AED that works without side-effects. Even though I'd avoid ones with "osteoporosis" listed try to remember that everyone reacts differently to the same drug which makes it hard to decide based on what side-effects other people experience.
 
Also thanks for the information on Prolia. It is one of the treatments our daughter's doctor has talked about, but the first concern lies in finding out the reason for her sudden and dramatic change in bone loss.

If we do not get to the "cause" we will once again be fighting whatever follow up side effects may come along from a new medication (such as possibly fighting lower calcium levels in the blood due to treatment with Prolia), versus getting to the source. Thanks.
 
Of the medications she is taking that we think need to be explored for this issue are: Felbatol, Valproic Acid, Phenobarbital, Citalopram, and Prevacid (generically known as Lansoprazole). We know that Prevacid is listed for such a side effect.

Hello Kristine,

My 12-year old special needs son was diagnosed with symptomatic Lennox Gastaut syndrome at age 3. His disabilities and seizure disorder were caused by brain damage when he was just 2,5 days old. My son has an acceptable seizure reduction and improved EEG thanks to the ketogenic diet. He started the diet at age 5 and now, age 12, he still is a ketokid. We've managed to wean all aeds and benzo's off since they didn't help anyway. The last one he tried was Felbatol (called Taloxa here in Holland and by then experimental), we were very afraid for the serious side effects on blood and liver this drug can cause and decided to try the keto diet instead, the very best decision we've ever made for him. But the keto diet can cause loss of bone density too... that's why my boy gets Dexa scans to check this out and he gets more vitamine D and calium suppletion as is usual prescribed by his keto dietician.

I know Valporic Acid (valporate), Phenobarbital and Felbatol (felbamate) are suspected to cause bone density loss. Phenobarbital is a well known cause just as phenytoin and valporate are. Felbamate is one of the younger AEDs used for LGS in particular, long term side effects are not all known/studied yet. It seems to me your daughter is at extra risk for osteoperosis using 3 or 4 medications with a negative effect on bone density.


http://www.ehealthme.com/ds/felbatol/bone+density+decreased

Study of Bone density decreased among people who take Felbatol. The study is created by eHealthMe based on 3 reports from FDA and user community.


http://medicine.ucalgary.ca/about/Jette/EpilepticDrugs/research+

The likelihood of fractures was highest for persons taking phenytoin followed by carbamazepine, other, phenobarbital, gabapentin and clonazepam. The only anti-epileptic drug not associated with an increased likelihood of fracture after adjusting for sociodemographic variables, homecare use and comorbidities was valproic acid.
Similar results were found when testing for the use of anti-epileptic drugs in monotherapy (individuals taking only one anti-epileptic drug) and in polytherapy (individuals taking more than one anti-epileptic drug). All anti-epileptic drugs used in monotherapy were associated with a significantly increased risk of fracture except for valproic acid, phenobarbital and “other anti-epileptic drugs.” The greatest risk of fracture was found in individuals in the polytherapy subgroups.


http://www.deepdyve.com/lp/elsevier/low-bone-density-with-the-use-of-valproate-sDVMek2WGw

article: Low bone density with the use of valporate.


http://pubs.acs.org/doi/abs/10.1021/pr1005263

Valproate and Bone Loss: iTRAQ Proteomics Show that Valproate Reduces Collagens and Osteonectin in SMA Cells
 
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Thank you so much, Dutch Mom!

Our daughter began on this combination of meds as a life saving measure when in PICU (pediatric intensive care unit) for status epilepticus.

With this combination of meds that have a history associated with bone density loss, I believe we will need to explore new options with her neurologist. This is likely the root of our problem, and if so we may need to risk upsetting her relatively good seizure control (as far as this goes with LGS) and attempt something new given this newest risk regarding bone density.

There is nothing to pinpoint in our daughter's history for the why of her LGS. She has already tried the Ketogenic diet, and it made no significant difference on seizure reduction. We have tried what seems to be a countless number of treatments already, and I'm not sure what else remains... but we will be exploring what may be new and reconsidering old in looking for all possible options.

I am so happy for you that the ketogenic diet has enabled your son to be AED free! This gives hope to all of us when we can rejoice with others in such success... take care and thank you!!!
 
Rufinamide (Inovelon)?

Hi Kristine,

I was wondering whether she has tried rufinamide (Inovelon) yet?
This is one of the new meds specificly prescribed for LGS.
I know several Dutch kids with LGS who are taking rufinamide with succes (i.e. for LGS reduction of seizures/acceptable seizures.)
Doesn't help each LGS-patient but is worth a try.
Rufinamide is relatively well tolerated (i.e. not too many severe side effects.)

http://www.neurology.org/content/70/21/1950
 
A clarification

Thanks for the suggestion but I'm assuming from the fact that it lowers calcium blood levels that Prolia is good for those that have trouble absorbing calcium.

Prolia is immune modulating. It basically decreases the activity of the cells that destroy bone and allows for the cells that build bone to be, in the balance of things, more active. That allows for bone growth and in doing so can decrease serum calcium levels, but not usually in a harmful way.
 
Thanks for the info. on rufinamide. We'll be asking our Neurologist about it soon.
Sheridan, (husband of Kristine)(father of Elizabeth)
 
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