We just got back from Cincinnati and Dr. Wong is putting Sam on Fosamax. His bone density was down to -3.2. It had previously been around -2.5. Has anyone used this? How has your son done? It was kinda shocking to see it had gone down so much since he gets lots of calcium and Vit D. We're also increasing his D to 2000IU/day (was at 1000), but are having to decrease his calcium supplements because there's too much in his urine. He drinks so much milk anyways, that she's thinking the supplements are just not necessary.

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Laurie, I wonder if the D being low has something to do with the calcium not absorbing. I think you need D3 for calcium to absorb effectively..We too have increased Seph's D to 2000IU day as his D was low and our bone density is on the low side...but improving....
What brands of D and Calcium are you using? We were using GNC and it wasn't absorbing.
Lori
Hi Laurie

I'm sure you read some of my post from another forum about my son's issues with hypovitaminosis. Our son also has low vitamin d levels. But, his levels have improved slightly over the last year since we increased his vitamin d dose to 2,000 iu's a day and expose him to sunlight 20- 30 minutes a day without applying sunscreen to his skin. I have a bunch of stuff saved on this topic so I'll post what I think you'll find interesting.
I should tell you that back in January, our son's endocrinologist ordered an entensive work up ( they took 10 tubes of blood from him) to try and figure out why he wasn't absorbing the vitamin d he was ingesting in food products and by vitamin d supplementation. The conclusion - his parathyroid gland was functioning properly and she seemed to think that too many of the additives in the supplements we gave to our son inhibited his body's ability to absorb the vitamin d. Anotherwards, most supplements contain additives such as: gellatin, cellulose, soy, etc. So, she seemd to think these additives were the culprits, Who knows? Interestingly, after we removed supplements for 2 months from his system and increased his vitamin d dose, his levels improved.
Vitamin D deficiency is common among children with neuromuscular disease

J.K. Mah, C.A. Stoian, N. Liu, E.
Goia (Calgary, AB, Canada)


Introduction: Hypovitaminosis D can contribute to suboptimal bone density in children.

Objectives: To determine the prevalence of hypovitaminosis D among children with neuromuscular diseases; to compare serum 25-hydroxyvitamin D (25OHD) levels of these children with healthy controls; and to identify factors associated with hypovitaminosis

D.
Methods: We performed a retrospective chart review of children with neuromuscular diseases. Their 25OHD levels were compared with values obtained from 136 healthy children.

Results: The charts of 55 children (46 boys, 9 girls) with neuromuscular diseases were reviewed. Their mean age was 11 (SD 4.9) years. Serum 25OHD was not available in 13 children. The remaining 42 (76%) children had a mean 25OHD of 48.3 (SD
17.5 ) nmol/L, which was significantly lower compared to healthy controls (p = 0.0002). Sixteen out of 42 children (29%) had hypovitaminosis D (defined as 25OHD < 40 nmol/L), including 10 with Duchenne muscular dystrophy, 2 with Becker muscular dystrophy, 1 with myotonic dystrophy, 1 with spinal muscular atrophy, and 2 with congenital myopathies. Patients on corticosteroid therapy were more likely to have low 25OHD (p = 0.040). Children who received 400–1000 IU vitamin D daily did not have significantly higher mean 25OHD levels when compared to those without supplements.

Conclusions: Vitamin D deficiency was common among children attending the pediatric neuromuscular clinic, and the optimal amount of vitamin D supplementation requires further studies. Recognition of children at risk for hypovitaminosis D and ongoing dietary counseling are necessary to ensure optimal bone health.

Study supported by The Alberta Children’s, Hospital
Foundation.
DMD and Osteoporosis by Ana Lucia Langer, MD
Posted 12.05.2003


Until recently, the doctors believed that the bone loss that occurs in DMD would be consequent of immobilization or the use of medications. Currently, osteoporosis has been observed, mainly in the lumbar column and femoral head, in the boys who still are walking and without the use of drugs that could lead to the reduction of bone mass, such as steroids. Scoliosis, which also occurs in a great percentage in DMD, is a factor that speeds up the loss of bone mass.

Steroids and Osteoporosis
The deleterious effect on the bone of steroids are well known. They act in different spheres:

a) In the cellular level they act directly inhibiting the function of the osteoblasts (cells for reconstruction of the bone)

b) the steroids stimulate the activity and increase the number of osteoclasts (cells for absorption of the bone)

c) also leads to a malabsorption of intestinal calcium, dependent dose, and it occurs in first the 2 weeks of therapy; The reduction of the intestinal absorption of calcium leads to the stimulation of the parathyroid hormone (secondary hyperparathyroidism) aiming at the maintenance of the blood calcium level. We have, as a consequence, an increase of the urinary excretion of calcium and, therefore, reduction of available calcium.

d) The steroids therapy brings negative effect for the secretion of sexual hormones. As example we have the retardation of puberty, the lesser production of testosterone in patients of the masculine sex (about 50% minor). The reduction of sexual hormones also contributes for the reduction of the mineral content of the bone.

During the first year of steroid use, loss of 5% of bone mass occurs. Later, this loss falls for 0.3 to 3% in the subsequent years. The loss is more intense in the first 6 months and is dose and time dependent. For this, all patients that receive steroids treatment need a planning for prophylaxis of osteoporosis in the initial phases of therapy.


Diagnosis: we study the bone density through the DEXA, dual energy X-ray absortiometry. Ideal It is an examination because it's not invasive and will consider the diagnosis of loss of bone mass and you predict the risk of fractures. X - Ray is not an adequate procedure that would demonstrate bone rarefaction when the bone loss will be around 50%. When the bone density demonstrated osteoporosis there is increase of fractures risk, also of vertebral column, indicating the pressing necessity of an aggressive treatment.

Treatment: 1) Diet must be enriched with calcium and vitamin D. Vitamin D is a necessity; you improve the intestinal calcium absorption and you prevent the excess of excretion through urine. Normally it is ingested pre-vitamin and needs solar light or, you change your activation form.

The recommendation of the daily vitamin D necessities is the following:

young children and adults 200 IU
adults over 51 years - 400 IU
adults over 71 years - 600 IU
These doses need to be reviewed by individuals that do not take sun, completely keeps their bodies covered, or because they use steroids.


The recommended dose of calcium is:

children - 4 through 8 years: 800 mg
children - 8 through 19 years: 1300 mg
adults- 1000 1200 mg

In DMD patients has a great concern with the caloric restriction. A rich diet in calcium associated with low caloric diet can be a difficult challenge of being looser. In these cases, the use of supplements is a factor of important prophylaxis for osteoporosis. The relation calcium and phosphorus is primordial. For an excellent absorption it is necessary that it is of 2:1. The excessive ingestion of phosphorus has negative impact in the bone mineral accumulation as it increase urinary excretion of calcium. Red meats in excess must be prevented, soft drinks as coke or similar, processed foods with additives with phosphorus or phosphates too. Salt and caffeine (again coke, coffee, tea) are common causes of loss of calcium in urine and must be prevented.

The vegetables, the nuts, the grains, the soy, the green grain of peak, vegetables (swiss chard, watercress, turnip, beetroot leaves, radish, parsley, brocolis) and dairy products are rich calcium sources.

Exercises: One of the best exercises for osteoporosis is walking. The exercises must be diversified, with some levels of resistance and developed efforts of an aerobic form. They must be preceded by warming up and be followed by stretching and , ideally, should be supervised by qualified professionals; in patients with neuromuscular diseases this type of orientation with frequency is not possible of being observed. In these cases the orientation is the following:

- For the patients who cannot walk , but they can stand, that tries to make it some times to the day. This bone stress has a positive effect. The equipments and wheelchair that help the patient in stand can be coadjuvant in this treatment.

- Swimming exercises, althrough not ideal as they do not promote bone stress, are better than no exercise at all.

- Passive exercise aimed out by specialized professionals can be of help for those without any possibilities of movement.

Drugs - Biphosphonates. Its main representatives are the etidronate, alendronate and risedronate. They are powerful inhibitors of bone reabsortion. It stimulates the function of the osteoblasts (cells for reconstruction of the bone). In vitro it stimulates the osteoblasts proliferation. Other actions: it increases the intestinal calcium absorption, stimulates the formation of the colagen of the cartilage, inhibits the lactic acid and the synthesis of prostaglandins. These are the most important drugs to use in osteoporosis, as much for treatment as for prevention. They are also the drugs for use in the fight of the side effects of steroids in the bone. The use of the drug can reduce the fractures of the vertebral column in 70% after 1 year of use.
Source: American Association of Neuromuscular and Electrodiagnostic Medicine (AANEM) Released: Thu 11-Oct-2007, 12:20 ET
Embargo expired: Wed 17-Oct-2007, 01:00 ET Printer-friendly Version


Children with Neuromuscular Diseases at Risk for Decreased Bone Density
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Medical News Keywords
BONE, DENSITY, CHILDREN, NEUROMUSCULAR, MUSCULAR DYSTROPHY, VITAMIN D, BONE
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Children with neuromuscular diseases such as muscular dystrophy, may be at risk for suboptimal bone density due to low levels of vitamin D. Healthy bone density is important to assure proper growth and bone strength in children.


Newswise — Children with neuromuscular diseases such as muscular dystrophy, may be at risk for suboptimal bone density due to low levels of vitamin D. Healthy bone density is important to assure proper growth and bone strength in children.

To determine the prevalence of hypovitaminosis D among children with neuromuscular diseases, a team of researchers from the University of Calgary in Calgary, Alberta, Canada, compared the serum 25-hydroxyvitamin D (25OHD) levels of 42 children with neuromuscular diseases with the values obtained from 136 healthy children. The children with neuromuscular diseases had a mean 25OHD of 48.3. (SD 17.5) nmol/L, which is significantly lower compared to the healthy children. Sixteen out of the 42 children (29%) had hypovitaminosis D (defined as 25OHD < 40 nmol/L), including 10 with Duchenne muscular dystrophy, 2 with Becker muscular dystrophy, 1 with myotonic dystrophy, 1 with spinal muscular atrophy, and 2 with congenital myopathies. Patients on corticosteroid therapy were more likely to have low 25OHD levels.

Recognition of children at risk for vitamin D deficiency can assist physicians in providing early preventive treatment and ongoing dietary counseling to ensure optimal bone health in this pediatric population. According to researcher, Dr. Jean Mah at Alberta Children’s Hospital in Calgary, Alberta, Canada, “The optimal amount of vitamin D supplementation for children with neuromuscular disease will require further studies. However, the preliminary findings suggest that periodic laboratory monitoring of vitamin D levels would be helpful for early detection of this problem.”

The complete findings and results of this study are being presented at the American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) 54th Annual Meeting in Phoenix, AZ, at the JW Marriott Desert Ridge, October 14-17, 2007. The AANEM is the largest organization worldwide, with over 5000 members dedicated to advancing neuromuscular, musculoskeletal, and electrodiagnostic medicine.
Hi Lori

I even gave Vitamin E to our son at the same time with his calcium and vitamin d to aid in absorption but his his vitamin E levels became toxic. Vitamin A,D,E, and K are fat soluble vitamins the rest are water soluble ( flush out of the system). His vitamin E levels returned to normal soon after we stopped the Vitamin E supplementation.

I believe our boys do require more vitamin d than other children especially if they take steroids.
Viactiv chews are a good product for the younger kids ( especially if they can't swallow pills) but my son grew out of liking them. I spent a small fortune purchasing several flavors and ended up giving them away. Now, he takes Nature's Made. The calcium pill comes in a smaller version but still contain 600mg/200mg of the vitamin. He choked on the bigger caltrate pills.
I'm sure Dr. Wong explained to you how to give fosamax to your son but just in case....


Fosamax must be taken with a full glass ( 6-8 oz) of plain water first thing in the morning and 30 minutes before the first food, beverage, or other medication of the day.Sam needs to stay upright (not to lie down) for at least 30 minutes and until after first food of the day ( to reduce esophageal irritation).

Just curious since I thought about using this drug for our son, was it prescribed daily or weekly?
Thanks for all the information. Sam currently takes Vit D3 from Puritan's Pride. Dr. Wong said to keep with this brand (good thing since I have about 4 bottles of the stuff still). We were also doing the Viactiv chews twice a day. Now I'm only giving him one if he doesn't get all this calcium through diet (milk, yogurt, cheese, etc). Although we're in Texas, he really hasn't gotten much sunlight to speak of this summer. We've swam, but he's always slathered in sun screen. It's just too hot and too many bugs. Once in school, he'll have recess and I don't put sun screen on him for that. His D level wasn't what would be considered low. I think it was a bit above 30, but we're going to try to get that up just a bit with the increase.

Tina, yes, we were told about how to give Sam the fosamax. I'm just trying to figure out what day of the week we'll best be able to do it (weekly dosage, 1/4 of bottle). I'm thinking Saturday or Sunday since during the week will be difficult with school. I try not to get them up any earlier than I have to on school days.
Hi Laurie,
Dr Wong put Danny on fosamax in May for the same reason but his Vit D was normal. Danny has no prob taking it. it is a liquid and the most important thing is to give first thing in am with no food in belly and they must sit up for 1/2 hour after (as it can cause severe heart burn issues),hope this helps.
Jenny G
it is a weekly dose
Tina said:
I'm sure Dr. Wong explained to you how to give fosamax to your son but just in case....


Fosamax must be taken with a full glass ( 6-8 oz) of plain water first thing in the morning and 30 minutes before the first food, beverage, or other medication of the day.Sam needs to stay upright (not to lie down) for at least 30 minutes and until after first food of the day ( to reduce esophageal irritation).

Just curious since I thought about using this drug for our son, was it prescribed daily or weekly?
Hi Laurie,

Tim has been on Fosamax for two or three years now. We saw an improvement then took him off for a break then saw a decline and put Tim back on. Tim takes the pill form every other week. He does not like the taste of liquid medicine. We give it to Tim on Tuesday mornings. I found a school day was a better choice for us because there is a structured routine and closer supervision. No laying around watching cartoons. We wake Tim up, give him his Foasamax and then he takes a shower, gets dressed and by then the half hour has passed and he can eat and drink etc. Tim does say the pill makes his back hurt the day he takes it but he takes it without much complaint. I was very hesitant about using this drug. There are significant side effects in ederly women and no data on children but my son's ped pointed out we need to treat what we see now and hope for the best in the future. Tim has a compression spot in his spine. I think they call it a wedge, not yet a fracture but a change. So far this has stayed stable and not progressed so we continue with the Fosamax.

Ellen Wagner
Question. What dosages are your boys taking? 35mg is the usual dose for adults. Fosamax comes in pill form. Can your boys swallow pills? What's the reason for the liquid versus pill form?

Ellen, I wonder why Tim's back hurts on the days he receives this pill. Only on this day? Huh?

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